Musings of a Cranky Caregiver

Super Duper News

2012-01-25T10:35:00.001-05:00

Skip's infectious disease doc called yesterday. He was checking in on the status of her PICC line as she'd had to have a special flush of it yesterday. The flush worked well and the flow was back to where it should be.

While we had him on the phone, Skip asked if the cultures of her bone scrapings were done growing. The doc was waiting for them to determine the severity of the cooties and thus the length of the IV antibiotics administration. Well, the results were finally in, and the cooties aren't too extreme so she only needs a total of 2 weeks of antibiotics! Woo hoo! We're already into the second week of the IV process, so all this will come to an end soon. We've got a good routine going now, but I certainly won't miss it when the antibiotics are done.

The next question is ... how is the PICC line removed? Can it be done in the home? The insertion needs to be done in a fairly sterile environment with access to Xray or ultrasound equipment to check its position in the body. I suspect the removal is much simpler. Just pull!

New Cranky Reasons #1: Lack of Control

2012-01-24T10:47:00.002-05:00

When I first started this blog, I documented a number of things that made me cranky in my Cranky Reasons posts. Lest folks think I'm getting happy and have lost the cranky edge, I've decided to start up a new list. I'm not checking the old list, so there may be some repeats, but everything old can be new again ... not just bellbottom jeans, but my cranky reasons.

Without further ado, then, let us start with the cranky reason that's top of mind for me today ...

New cranky reason #1: Lack of control. Primarily, over our personal space. I first thought of naming this reason "Space Invaders," because those are the people that are the primary cause of the loss of control. People are always coming to the house: mostly nurses and home health aides. They provide valuable services when they're here, but they are providing that service here, and that's the problem. You lose your privacy, especially for Skip who, during these visits, is receiving medical attention or a bath. This morning was over the top as we had 2 RN's and 1 LPN here for more than an hour while the nurse who's an IV specialist was working on Skip's PICC line (where her IV goes in). Another was being trained and the third is Skip's case manager. And, they arrived at 7:30!

If the people are new, you never know how they'll react to the dogs going a bit crazy with barking and such when they arrive. Will they close the gate correctly when they go or will it drift open so Addy can escape? And, will they leave the house as they found it (which, admittedly is cluttered and not spotlessly clean)? The answer to the last question is often no, particularly for the aides. They never wipe the counter in the kitchen after preparing Skip a meal, they get water all over the windowsill by the sink so it's now lost some of it's varnish, they leave cabinets and drawers ajar and so on. I've provided feedback to some of them, but it hasn't helped. I'll admit I'd rather just properly close Skip's sock drawer than have to do all the work they do when they're here, but, really, how hard is it just to close it all the way? Every time I do it after they've left, I ask myself, do they leave all the drawers and cabinets open at their own homes?

Feeling Good Monday #1

2012-01-23T09:04:00.000-05:00

The last two Mondays, I posted about how starting back on Weight Watchers was making me feel good. Stealing a page from my friend Very Josie (she has an "It's Okay Tuesday" routine), I thought I'd spend a few minutes on Mondays acknowledging those things in my life that are making me feel good. It's sort of the anti-Cranky.

Of course, tops on the list of feel-good items is the Patriots. They're going to the Superbowl!
Skip is home. This is more work for me, but I miss her when she's not here. And, she's a lot happier here than in a rehab hospital.
The new agency we're using for home care doesn't send aides on the weekend, so we didn't have anyone here for two whole days. While it's always great to get their assistance, it's still a welcome change when it's just us for the day.
I'm still working Weight Watchers. I'm obsessed with food, but in a positive way, as the program guidelines are helping me make the right choices. I've lost 10 pounds so far. And, I've been exercising using my Wii.
Newt Gingrich won in South Carolina. Who would ever have thought that? I am happy that the Republicans will continue to tear each other apart as they march to the nomination. And, it's possible they'll nominate some whack job who will go down in flames against Obama. If it is Romney who gets the nomination, I wouldn't freak out too much if he won in November.

Enjoy your week. Feel good!

Winter's Finally Arrived

2012-01-21T21:30:00.002-05:00

Since the October Nor'easter, we hadn't had any snow up until yesterday. Yesterday, we picked up a couple of fluffy inches. Today, starting before dawn, we got more snow. All told, it probably amounted to 3 more inches. With the combined accumulation, I figured that meant it was time to pull out the snow blower.

Last winter was my first winter being unemployed. I took a look at our expenses and identified a bunch of ways to cut costs. One expense was snow plowing. I figured I could handle the driveway if we bought a snow blower. I'm not handy at all, so I didn't want a big, gasoline-powered snow blower that would need to be maintained and breakdown regularly. I found a great little Toro electric snowblower and bought that along with a long extension cord. It paid for itself about halfway through last winter. For the snowfalls over 8", it took two passes to take care of the entire driveway, but we don't get many storms that pile up that much snow.

This afternoon, when the snow finally tapered off, Addy and I went out while I shoveled paths and pits for the dogs. Then, I coaxed her into the house (for a little tiny dog, she really loves the snow) and pulled out the snowblower. This turned out to be the perfect snowfall for the first effort of the year. Not deep and very powdery. All the routines and approaches I'd figured out last year came back quickly. It was a pleasure to get outside in the clear, fresh air and take care of the driveway. And, of course, the snow blowing counts as exercise in Weight Watchers!

The Longest Day

2012-01-19T12:42:00.000-05:00

Wednesday ...

Up at 6:15 to get ready as the nurse was due at 8 to admit Skip to the new visiting nurse agency and, more importantly, to train me to administer IV antibiotics. Yes, your hero, her Crankiness, has to perform the twice-daily IVs.
Turn Skip, make coffee, take out the dogs, and so on. Get dressed as I figure I should make an effort to meet the nurse for the first time in street clothes and it's pj's every day thereafter. (Today, I graced the nurse with my leopard print flannels.)
Nurse calls at 8 to say she is on her way but has to stop at the office. She'll be here at 9.
I dust and vacuum the bedroom, do some other random cleaning. Throw in the first of 4 laundry loads for the day (lots of sheets and blankets came with Skip from the hospital. Gotta clean those cooties off.)
Nurse calls again. Yada yada yada. She'll be here at 9:30.
She shows up at 9:30. Meets dogs out in the front yard. She likes dogs (a plus). Immediately makes a positive impression as she's warm and friendly. I love her professionalism, her knowledge, and she trains me very well on the IV, primarily by not taking over but letting me do it with her observing.
She leaves around 11:30. Phew! I've got a job interview at 3 and still have to bathe Skip (no aides yet from the new agency), feed her, feed myself and shower. Finally get out of the house just in time to arrive at Starbucks for the interview at 3:01.
The interview goes well. Really, it's not too much of an interview as this guy works for the guy who was my boss at another company for 11 years so I'm a known quantity. It's a part-time sales job I can do from home. Will know more details soon.
Home around 5 with a mocha frappucino for Skip. She's in fairly good spirits; still happy just because she's home and not in rehab.
Skip has slipped down in the bed a bit. I pull her up.
Do as close to nothing as I can for an hour plus.
Feed Skip dinner at 7:30. She's pretty weak and we're having a sesame noodle dish (the noodles are hard for her to manage) so I literally feed her. The dogs stand at ready beside her so I can give them lit bits of pupperoni treats.
More laundry. Dishes.
On to the second IV. This time solo. I get out the instructions and follow them end to end. Got some bubbles in the line, how I don't know. Worked very hard to flick them out of the line (research online after the IV was started told me the small bubbles are not a big problem). Finally got the IV started. Was supposed to take 2 hours but it went on quite a bit longer. Fiddled with the drop rate to speed things up a bit. Finally done around midnight. Off to dreamland.
At 2:50am, Skip wakes me up because of a problem she's having. I hate being awakened in the night; fortunately this happens infrequently. However, I hit a very low, highly cranky state. It's 62 in the house and that is cold! Spend about 20 or 30 minutes taking care of Skip. Adjust the alarm from 6:15 to 7:15 to make up for lost sleep time. Addy says, well Mom as long as you're up, why not take me out? Man, it's really cold outside! Then, back to bed. Out pretty quickly.

This morning, the 7:30 nurse visit turned into a 9am arrival (are we sensing an unwelcome trend?). Still no home health aide scheduled. Spoke to scheduler; she just got Skip's info on her desk this morning. Grrrrr. They don't have aides on the weekend!! Grrrrr. Can't wait to drop this agency like a hot rock and go back to the folks we've been using for years when the IV process is done (our prior folks don't do IV's for some reason).

Home Again, Home Again, Jiggity Jig

2012-01-18T23:05:00.001-05:00

So the Skipster is home. The ambulance pulled in the driveway about 8 o'clock last night. We got her all settled into bed and after the EMT's left, I let the pups out of the crate to run in and love her up. They were delighted to see her.

While she was in the hospital, they started her on her a twice daily IV antibiotic regimen. But she's going to need 2-4 weeks of the antibiotics. She could have gone to rehab and had it done there but we've been that route and we'd both rather not have her go through that again. Instead, we opted for home infusion. Foolishly, Medicare doesn't pay for home infusion, but they will pay the freight for a patient to stay in a hospital or rehab setting to get the IV. Fortunately, Skip's Medigap coverage covers a portion of the IV antibiotic medicine, so we won't have to pay too much to save Medicare thousands of dollars for the rehab stay.

Today was a VERY full day and that story merits its own post. I'll share that tomorrow. In the meantime, I'm just waiting for Skip's evening infusion to finish so I can go to sleep.

Still Home Alone

2012-01-17T09:06:00.000-05:00

Just a quick update as I've got to run out shortly...

The docs decided to keep Skip in the hospital while they had some results, but wanted to get more growth in the culture. They started her yesterday on twice a day IV antibiotics. She had a mild allergic reaction to this antibiotic in 2007, so they're giving her Benadryl beforehand as they really want to use this particular one.

She called this morning and before she even gave me an update, I knew from her voice that she wasn't happy. The resident had come in this morning (trailing along with him 5 students) and told her that the culture is growing very slowly and so she likely would not get out today.

It's funny how quickly routines can develop. Since her first full day in the hospital, I've spent 3 or so hours with her each day from late afternoon into the early evening. While there, we look over the menu and order her dinner. This way, I can feed her. Since she's lying partially to one side, she can't get in a position where she can feed herself. Yesterday, she wasn't feeling that great and was practically falling asleep most of the time I was there. I think it's mostly a combo of the Benadryl and antibiotics that are making her feel crappy. So, we held hands and I watched tv while she drooped.

Good News. Bad News. Cautiously Optimistic News.

2012-01-16T10:33:00.000-05:00

Good News. Skip's surgery went very well. In fact, they didn't have to grab donor flesh from her thigh to fill in the gap where the scar tissue had been. Not sure how they filled it in, but there's only one incision so no second site to cause pain, worry about, and have to heal.

Bad News. On Saturday afternoon when I was visiting, an infectious disease doctor came in. Not a good sign; they don't just visit to make nice-nice. Turns out the small wound actually had a tunnel that had gone down to bone and, while open to the world, the bone had gotten infected. We were glad the infection had been found so it could be treated rather than increase unchecked, but the news filled us with dread. After all, when Skip had the monster pressure sore two years ago, the bone infection she had then landed her in acute rehab for 28 days of twice daily IV antibiotics. Further, my understanding is that Medicare will not pay for IV administration in the home. Instead, you have to be in the hospital or rehab to receive it (to me, this makes no sense. It has to be much cheaper to have a visiting nurse come and administer the IV in the home rather than pay for all the trappings of a hospital or rehab setting.).

We were told that the bacteria was being cultured and, until the culture yielded results, they didn't know what the right next steps should be. It could be as easy as treatment with an oral antibiotic or as bad as IV antibiotics.

The potential of further hospitalization to treat the infection sent Skip into a tailspin. The plastic surgery residents told her she'd need to stay in the hospital until the results were known and a game plan devised. She was quite depressed while we waited 24-48 hour for further word of the culture results. The infectious disease doc stopped by yesterday afternoon while I was visiting to let us know the culture still hadn't yielded results.

Cautiously Optimistic News. This morning, Skip called me and she sounded surprisingly perky. Apparently, one of the plastic surgery residents had stopped by to tell her that the culture was in and it looked like it wasn't a superbad bug and treatment would be oral antibiotics. And, it was possible she could go home today; the release decisions are made around noon, so she'd get an update this afternoon. She was in great spirits as a result. I, for one, want to hear what the infectious disease doc has to say about the infection first, but I am cautiously optimistic for the simplest way to resolve the infection.

We'll know more in a few short hours.

Good News

2012-01-14T10:56:00.002-05:00

Skip had her flap surgery yesterday and it went well. A quick recap of the day:

Got up at 5:15 to get the day going. Aide came at 8:15 to bathe and dress Skip. We left the house at 9:45, right on schedule.
Arrived at BWH at 10:30. Admitting saw us at 11:30 and then a few minutes later, we went to the pre-op area. They transferred Skip onto a gurney and I got her changed. The pre-op nurse asked a million questions. The OR nurse came in and introduced herself and asked more questions. The residents came in and enthusiastically said "hi." The plastic surgeon came in and marked Skip's right side to make sure the surgery was done there. The anesthesiologist came in and asked the same million questions then started up an IV and took Skip off to surgery at 12:30.
I went up to the family waiting area. Nice! They gave me a pager like you'd get in a restaurant while waiting for a table. There were carrels with computers for surfing the web, tables for comfortable eating, separate areas with overstuffed chairs, consultation rooms for private meetings with surgeons and, best of all, two separate rooms for tv watching. This left the main waiting room free of the constant tv noise you'd often find in this setting.
At 1:30, only an hour after Skip was whisked off to the OR, the surgeon called to say everything had gone well. Great!
But there was still more waiting, as I didn't get to see Skip in recovery until 4pm. She was still a bit sedated, so was quite mellow and sweet when I saw her. I should say here that I'm so glad we live in the times we do because there's no need for us to hide the nature of our relationship in settings like a hospital. I tell everyone that I'm Skip's wife and know that informs folks immediately of our family connection and legal standing in case of important health decisions.
At 6:30 or 7:00, a bed finally became available and Skip got transferred up to her room. A bit after 7, I knew she was definitely fully with-it because she started to get a bit cranky. They gave her the first bit of pain medication since coming out of surgery and she started to feel better after that.
She sent me home at 8:30. Wow! It got cold and windy during the day. Looks like we're actually going to have winter here in southern New England after all.

With everything going swimmingly in yesterday's surgery, I expect Skip will come home on Monday. The pups and I will be glad. While it is nice here at home to have some peace and quiet, it'll be good to have Skip home. I know she is getting good care at the hospital, but it's nothing compared to the kind of care and attention she can get here when she's gone past the initial phase of her recovery.

I'll go in to the hospital this afternoon to visit. I expect feeding herself will be a real challenge for Skip, especially as she can't fully lie on her back yet, so we'll order her a good-sized lunch while I'm there and I can help her eat. Unfortunately, I won't be able to stay and watch tonight's Patriots game with her. Watching the game alone just won't be the same; the dogs won't be as responsive to my growls when bad things happen and cheers when it's good. A small price to pay to have Skip's pressure sore cleaned out and on its way to a good healing.

Chillin'

2012-01-11T13:19:00.001-05:00

This is one of those rare days when there's no one coming to the house for Skip. No nurses, no aides. Just us chickens, chillin'. We're taking advantage of this quiet to help Skip calm down a bit before the surgery on Friday. She is getting more nervous as each day brings us closer. I'm not sure which is bothering her more, the surgery or the time in the hospital afterwards.

So, Skip has asked me, in the interests of soothing her, to do some things that I hate doing but are important to her. Tops on this list is putting out bird seed. Next will be packing up the things she wants to bring to the hospital. Normally, I'd do that on Friday morning as that's my style, but Skip is most comfortable doing things in advance. It'll help her obsess less about what needs to be packed if it's all taken care of today.

Even being nice and doing this stuff, I'll still have plenty of time for myself to relax, exercise and put up some items on eBay. Sales have really lagged since Christmas and I need to put some items up that will bring in some dough. Gotta love that chillin'.

Feeling Even Better

2012-01-09T14:47:00.002-05:00

Today is the end of my second week on Weight Watchers. The online tools are just great, especially the Plan Manager that tracks food eaten and activity. It has a huge database of foods, including prepared dishes, so even items that I don't prepare can be more easily tracked than in the old days when I had to rely on a small pamphlet of points values.

The thing that makes me feel best, though, is that I finally hooked up my Wii yesterday and used it yesterday and today for exercising. A looooooong time ago, I unhooked it to lend to a friend and never set it back up when she returned it. I originally got the Wii thinking that Skip and I could use it together, but she doesn't have enough functioning in her hands to easily operate the controls, so that was pretty much of a bust. So, I bought the balance board to use it for exercising, and that's what I'm using now. For me, I particularly like the aerobic and balancing exercises. My balance is poor, I believe as a result of my Meuniere's disease (an inner ear problem that occasionally causes vertigo), so it's good to have tools that can specifically work on its improvement.

All in all, I feel better both physically and mentally. My energy is good. My spirits are very good. Being more thoughtful and deliberate about what I'm eating is giving me a boost. I am very happy about starting up Weight Watchers again.

Pre-Op Plans

2012-01-07T10:16:00.000-05:00

There's a lot to be accomplished before Skip's surgery since she'll be bedbound for 6 weeks following the procedure. She got a tooth pulled early last week. Then there was the pre-op appointment at Brigham and Women's Hospital on Friday. We followed that up with a BBQ dinner out. She'll be going to her MS clinic next Thursday. She needs to see her neurologist so he can do a write-up for Medicare as part of the request for a new wheelchair.

Fortunately, we also have some socializing to do as well. We typically have dinner with my mother on Saturday nights, so that's where we were last night. My brother, his wife and their oldest daughter also joined us. That was fun. Today, we're getting together with old friends we hardly ever see since they moved away to Cape Cod about 10 years ago. We're meeting halfway between our two homes for dinner. On Thursday, it's on to see another couple that we love very much for dinner. Since they bought a vacation home in Maine a few years back, they're not around much on weekends, so we don't get to see them very often.

For Skip, who only gets out about once a week, this has been quite a whirlwhind. I guess we're getting 6 weeks of outings crammed into 2 weeks.

Some thoughts about the pre-op appointment. The nurse who met with us spent two hours going through everything to prepare for the day before and day of surgery. She was great. Skip and the nurse, Patty, bonded immediately on their Irish background. She was very professional, knew her stuff, knew what was important, but also was very caring and warm. A tech came into her office while we were meeting to draw blood and perform an EKG so we didn't have to wander around to different offices, with a wait at each one.

There is a stark contrast between this hospital and the hospital where Skip had day surgery in 2007. MW (Skip's aide) took her to the pre-op appointment, so I don't know what went on there. But, when we arrived at the day surgery admissions, there was no assistance whatsoever offered to help Skip get into a gurney and ready for the surgery. I had to manhandle her onto the gurney and change her into a johnny without benefit of any hospital staff assistance. This was completely consistent with all our interactions at this hospital. Skip was admitted there in 2004 for kidney stones and there was no one to help the nurse transfer her into the hospital bed following her admission. I had to help get her to bed. Tests -- they never had any device or people to transfer a disabled person from wheelchair to examining table. Patty at BWH told me I wouldn't have to do anything on the day of surgery except to make sure Skip was safe and everything was to our satisfaction. She told me when we checked in for the surgery, the "transfer team" would show up and take care of everything for Skip. How great is that for both her and me?

High Maintenance Girl

2012-01-05T10:29:00.002-05:00

When you read the title of this post, you might have thought I was referring to Skip, because she often can be very high maintenance. But, so can the two dogs, Ruby and Addy. In fact, we have a saying for when all 3 of them are in high maintenance mode together: "needy, needier, neediest."

Addy at 6 months. I really should take photos of her now to show her much longer hair. (All these photos taken by MW, Skip's aide, who is totally besotted with these pups.)

Last night was Addy's turn. I went to sleep around 11pm. Addy started whining around 1am. I don't wake up from the whining, Skip does and then has to wake me up. I finally got tired of Skip bugging me about the whining and got up and took her out. It isn't all that uncommon for Addy to go out in the middle of the night. Ruby is smart enough to "take care of business" before going to bed but Addy, despite being almost 2, hasn't got that down and about 1 in 3 nights she whines to go out in the middle of the night.

What is uncommon is a second bout of whining. At 3:30, Addy whined and whined. And I finally, with much crankiness, got up. Turns out, all she wanted was a drink of water! Grrrrr.

Admittedly, though, regardless of what any of them do, I still love all my high maintenance girls.

Bonus Content: when I looked through the album that had the photo above, I found this great series of something I've seen acted out countless times since ...

This series of photos shows a scenario that is played out almost daily between the two pups. Ruby has a piece of rawhide she's chewing. Addy comes closer. Ruby holds her head up, perfectly still, Addy moves in and takes the bone without resistance from Ruby. Addy chews on it for a minute and then discards it ... fun is over for her now that she has stolen it.

The Flap

2012-01-04T11:21:00.000-05:00

As those who have read my blog for a while know, Skip has been bothered by pressure sores on her butt off and on for the last 2 years. The first one, that lasted from the fall of 2009 until May 2010. It was huge and got so deep it exposed bone, which eventually became infected. That whole horrible scene included 5-1/2 weeks in the hospital and rehab primarily to administer IV antibiotics for the bone infection.

So, once that wound healed up we thought she was done with those troubles. Unfortunately, some months later, a small irritation started up on top of the area on her butt where the monster wound had been. This irritation slowly but surely morphed into a real live small wound that has resisted all attempts to get it to heal. Finally, her wound nurse recommended Skip try out the wound center at Brigham and Women's Hospital (BWH) in Boston. She thought they might recommend flap surgery.

Well, that's just what they did. Apparently, large pressure sores that heal often leave in their wake a lot of scar tissue. The scar tissue makes the whole area more unstable and prone for sores, making it likely that Skip would continue to have them there pretty much continuously.

The surgery would involve removing this scar tissue and replacing it with donor tissue from Skip's thigh. The procedure doesn't take too long, just a few hours. A typical hospital stay following the surgery is 3-4 days. Then, Skip will be transferred home via ambulance (so she doesn't have to sit up) to spend the next 6 weeks in bed. The long bed rest is necessary for proper healing. Only about half of the flap surgeries performed succeed but those who are compliant with their bed rest have much higher success rates.

Not surprisingly, Skip is very nervous about this surgery. I would too, in her shoes. But we're both confident this is the best approach to help her, ideally, live sore-free going forward.

Off to the Dentist

2012-01-03T21:10:00.001-05:00

I took Skip to an oral surgeon today to have a tooth extracted. We were there for well over 2 hours, but it all worked out very well. The dentist used novacaine rather than anesthesia so it took quite a while for the numbness to really set in, which accounted for most of the time we were there. The extraction itself only took about 5 minutes.

For a while, we were on a bit of a hiatus for Skip going to the dentist because we couldn't figure out how to get her transferred into the dentist chair. Up until about 3 years ago, I would use our "pick and plop" move for the transfer: put Skip's wheelchair beside the dentist chair, grab her upper arms, pull her up out of the wheelchair, swivel her around to the dentist chair and then plop her down. It's been so long since I've done that, as I tried to remember the steps, I couldn't believe I really did that move multiple times in a day for every transfer, day after day, for many years.

So, anyway, as I was saying, Skip had to stop going to the dentist for a while as we tried to figure out a new way to get her into the dentist chair. We finally realized that putting a twin sheet folded in half under Skip in the wheelchair could work like a sling to lift her with. We first tried it with MW, Skip's intrepid aide. MW is strong and very tall for a woman, perhaps a bit taller than me and I'm 5'11". She stood at Skip's head, me at her feet. Picking up the four corners of the sheet, we were able to transfer her safely into the dentist chair. Woo hoo! MW has had 2 shoulder surgeries since then, so we hornswaggled my brother into helping out. Today's transfer was absolutely the smoothest ever. The dentist's assistant even commented on how it was the best she'd ever seen.

We filled a Tylenol with codeine prescription on the way home and Skip took one even before the novacaine wore off to try to minimize the pain. After an early dinner, I put her to bed. When I came in from doing the dishes, she told me her tooth was bothering her and I suggested she try to sleep. Shortly after assuring me she couldn't fall asleep before 11, I heard her light snoring. It's 9:30. Sleep well, Skip!

Feeling Good

2012-01-02T10:18:00.002-05:00

It's day 7 on Weight Watchers and I'm very happy I started back on the program. I've experienced a definite improvement in my outlook, going from pessimistic to optimistic. Using the WW program gives me some control over a bad situation. I felt like I was just going to continue gaining weight and getting further out of shape, compromising my ability to be a good caregiver and impacting my longevity (I now realize at 55 that I won't live forever!). Losing weight and getting active helps to turn this 180 degrees -- taking care of Skip and, most importantly, taking care of myself.

It feels great to be doing something positive for myself.

Weight Watchers

2011-12-28T10:29:00.000-05:00

I joined Weight Watchers yesterday. I'd like to lose about 75 pounds. I'm trying out the online version, rather than go to the meetings. If it turns out that I feel I'm lacking motivation or falling off the "wagon" using the online version, I'll start going to the meetings, but I'm hoping it'll work out with the online only approach.

Over a 2 year period from 1999-2000, I lost 98 pounds using Weight Watchers. I felt great, was physically active, and enjoyed having a far greater set of clothes options available. Slowly but surely, 75% of those pounds have returned. And they're weighing down this mid-50s body.

The program has the core concept of "points" that you allocate to your food for the day, but the calculation of points has changed quite a bit since I last worked the program, so I'll need to dig in and figure out how it works. This is a good thing for me. The more I dive in and learn, the better the new model will stick with me.

I love to eat but, honestly, I feel I'd rather feel healthier and be more physically fit than eat to my heart's content. Gotta get in shape to make sure I can take care of Skip in the years to come!

A Quiet Christmas For Us

2011-12-23T09:32:00.001-05:00

We've got a low-key Christmas going this year. No big parties here at the house. And, we aren't giving each other too many gifts, unlike years past. We have so much stuff, it's hard to rationalize spending money on more things we don't need. This is sad for Skip because she is a great gift-giver. Picks out great things to give me. She's also a great gift-picker, finding things for me to give her!

On Christmas day, we're having brunch with my mother at her new home. She sold her house on the Cape this fall and now lives in a very nice independent living apartment in central Massachusetts. (She's encouraging us to move there, but we're still 7 years from age eligibility.) We went there for Thanksgiving and the brunch was very good; we're expecting another good meal on Christmas. Then, we'll head back to her apartment to exchange stockings and visit. She'll let me put football on the tv. My brother's son got married this fall, and that nephew and his wife will be stopping by for a visit since they're heading off on vacation the next day.

On the 30th, we'll be getting together with my mother, my siblings and their kids for a family celebration. We'll be having this shindig at my mother's place, where they have a private dining room for family get-togethers. My brother's 3 kids are all adults now and my sister's two sets of twin boys are 16 and 20. I'm not very good with kids, so it was hard for me to chat them up when they were young. Now, I enjoy their company very much so these get-togethers are really fun for me. The fact that we'll be at my mom's and none of has to cook or clean up is just an added bonus.

We used to host a party for Skip's brothers who live in the area and their kids and grandkids but we skipped a year some years back and never brought it back. We will be seeing 2 of Skip's brothers and a sister-in-law for dinner in early January, though.

Even though we're not exchanging a lot of gifts, we're not completely done. Guess I'll have to get out today or tomorrow and finish up!

I Worry

2011-12-21T11:30:00.000-05:00

Let's just say right up front here that I am not a worrier by nature. I expect positive outcomes and I rarely worry about the bad things that could happen. All this in spite of Skip's 20+ years of progressive MS.
But now I worry about one thing in particular ... breaking down when Skip's in the car. I've mused here and there about it ever since our vacation in Maine in August 2009. I spent a good amount of time in the 3 hour drive to Maine worrying about what would happen if we broke down. The car contained Skip, two dogs and me along with an unbelievable amount of stuff, such as a 5' ramp and a hoyer lift. Of course, we didn't break down on the way up or the way home.

In fact, we have only broken down once in the last 25 years of driving and it happened in summer 2010 (so does this mean I shouldn't worry about this?). Ironically, it happened a day after I spent way too much money having tons and tons of preventive maintenance done on our car. Some kind of cable moved out of position and I couldn't put the car into drive. Turns out it was caused by that preventive maintenance. The car had to be towed, and we had quite a time finding a handicapped-accessible cab to get us home.

But our Honda Element with wheelchair mods (aka the Toaster) isn't brand new anymore. Right now, it's only 6 years old with a bit less than 60,000 miles on it. My plan is to keep it for as long as possible, ideally for another 100,000 miles.

I think I worry because it would be so difficult to get Skip home safely and easily from a breakdown.

What would happen if we did indeed break down? Let's say the wrecker dispatched by AAA comes and he needs to tow us somewhere. We can't hop into the front seat of the wrecker and drive with him. Skip can't stay in the Element while it's towed. So where does she go? How does she get home? So far, I've thought of using a handicapped cab (not available everywhere), an ambulance (big expense, and I don't see how we get the wheelchair into it), and lifting her out of her wheelchair and into a regular car, but that would require leaving behind the wheelchair in the car and at least 3 or 4 folks to make the transfer both into and out of the car.

I'm sure there's other options I haven't thought of. Any ideas? I'd love to have some solutions in my pocket in advance of any traveling.

New Stuff on the Right-Hand Nav Bar

2011-12-19T08:10:00.000-05:00

I've added 2 new items on the right-hand side of my blog: a space to replay my last 5 tweets and a list of the most popular blog posts. Of course, so far, I've only tweeted twice, but one of those tweets was a test text sent from my phone, so it'll be easy to add updates going forward. When I was looking for the tweet gadget, I noticed another gadget for listing your most popular posts. I thought that'd be fun for a while. Not surprisingly, most of the popular ones are about caregiver aids, since those are the ones that'd show up in Google searches. Because, from experience, I haven't found much online about things like our modified Honda Element (called the XWAV) or the lift system (Surehands) that we've got installed in the bedroom and bathroom. But why was a post about going to a Halloween party with or without a costume a top post?

October Nor'easter

2011-11-24T07:40:00.001-05:00

Suffice it to say, we don't get snow in Massachusetts in October. We barely get it in November and often don't even have a white Christmas. Turns out it's a good thing we don't get it that early. When heavy, wet snow lands on trees still filled with leaves, trees and limbs fall on power lines and lights go out.

For us, the power went out at 3am on Sunday, October 30th. The storm had started early on Saturday evening. We only got a few inches of snow, but it was very, very wet. We kept the heat up higher than normal through the night just in case we lost power, so the house would stay as warm as possible. Skip has a low air loss mattress on her hospital bed to help with her pressure sore. To stay inflated, the mattress requires electricity. We have a battery backup that lasts for about 80 minutes. From previous outages, we knew it wasn't too uncomfortable for her to lie in the deflated bed for a number of hours.

When we woke up in the morning, I figured we'd need to book a hotel room as soon as possible, before they were all taken by others in the same situation. We could always cancel before the evening if the power came back on. Here in the suburbs of Boston, there are plenty of hotels around like Courtyards and Embassy Suites. The first handful I called either didn't answer or answered and said they had no power. On the fourth try, I found a place with rooms and power but they didn't take dogs; fortunately, they had a sister property nearby that did.

We still had hot water (thanks to gas heat!). Skip's aide came in the early afternoon and bathed her, dressed her and got her up. The aide had a hard time getting to our house because there were trees down all over the place including multiple trees down on the street just before ours. Multiple lines were down. From that, we knew it would be a long while before power came back on.

With a fully packed car (boy, the disabled sure need a lot of crap to get through the day. I used to take multi-day trips for business with just a rolling suitcase that fit in the overhead compartment on a plane. That suitcase was about 1/10th of our load.), we drove over to the hotel. The setup for guests with dogs was excellent. Our room was on the ground floor with a second entrance out the back leading to plenty of space for dog-walking.

The room itself was great. Plenty of space to get around with the wheelchair, nice furnishings and quite clean.

At home, we have a system for transferring Skip installed in the ceiling of our bedroom. We also have a Hoyer lift that a friend gave us after her mother, who had MS, died (we used to have a manual one, but this baby had power!). At bedtime, it worked like a charm for the transfer at the hotel, able to get Skip up plenty high to get onto the higher than normal hotel bed.

I don't know how Skip is so brave, allowing herself to be hoisted up for transfers. She is so accepting of this stuff, never freaking out. She's calmly handled a crew hauling her in her chair up a flight of stairs on more than one occasion. I know I wouldn't handle it with such grace. At home, these transfers are old hat, but this definitely was not. So, we walked through each step of the transfer beforehand. Just knowing what's coming makes things easier for her.

We ended up staying 2 nights at the hotel. Ruby, who is a mellow dog, settled right in. She spent her time chilling on the bed (after just a short bit of sniffing around when we first got there) and was fine going out on a leash. Addy, not so much. Lots of investingating. Wouldn't pee when I took them out. Once she lasted 16 hours before finally going. Barking when she heard noise out in the hall. Slowly but surely, she got used to her new surroundings.

On Tuesday morning, we knew we wouldn't be able to stay another night as the hotel was fully booked. Power still wasn't on at home, though the power company web site said our town's power should be restored everywhere by midnight that night. We decided we'd head down to the Cape and stay at my mother's house overnight. My mom just sold her house and was moving on November 3rd, so I needed to be there, helping her, my sister and brother pack up. This also was a chance for Skip to get one last visit to the house that had been my parents' home for 20+ years. The last time there for her was a short visit after my father's memorial service in June 2010. We hadn't stayed overnight in years because, though accessible, the guest bedroom and bathroom were hard for Skip to manage. With the Hoyer, we'd be able to handle it.

We ended up staying two nights even though the power came on at home Tuesday evening (when the answering machine answered the phone, I knew the power was back). I was able to spend a lot of time packing and Skip got an extended visit with my mom.

I'd rather have not had to spend the money on the hotel and restocking the refrigerator, but otherwise, this turned out to be a fun change of pace. We haven't traveled since our 2-week vacation in Maine two summers ago. Skip's now more disabled, primarily due to her 5+ week hospitalization from her bone infection in late 2010. I'd love to be able to travel again. This short stay in a hotel proved we can do it successfully. Skip spends a lot of time in bed and only gets out about once a week, so this was a great chance for her to getaway. And, Addy isn't very good with new people. She barks, she has submissive pee issues. In the 4 day period of traveling, she met lots of new people and experienced lots of new things. Since getting home, when we send her outside to greet the nurses and aides who come to the house, she's not peeing as much. Let's hope this trend continues.

Dreaming of all those different places we might go to ...

I'm Back!

2011-11-20T22:58:00.001-05:00

Over the last 8 months, since I closed the door on posting to this blog, I've often thought that the experiences I was going through, the things happening to Skip or my musings of the moment would be good items for posting here. So, I've decided to get back in the saddle.

So let's bring everyone up to speed on our little family and its current state ...

Skip and I celebrated our 30th year together in August. Yikes! How did that happen? How did we get that old?

Skip's MS is about the same as it was last March, though she says her left hand has gotten worse. Fortunately, she can still feed herself most of the time and manages to do a lot of surfing on her computer. Ruby recovered beautifully from her back surgery last February and dropped 6 pounds (20-25% of her body weight) because we changed how we fed her. She's gotten quite spry. Addy will be 2 at the end of January, so she's a teenager now. Still rambunctious and a barker. Her long hair is just beautiful and I'll have to post some photos so you can see what I mean. In many ways, she reminds me of the dearly departed Sally, with her extreme lovingness to both of us and her total attachment to me. Unlike Sally, though, she has not managed to piss off any skunks and remains unsprayed to date (Sally got sprayed 5 times in her short 4 years of life).

And me? Well, I'm still unemployed. Whenever I stop to think about it, I wonder how I managed to be a caregiver and work a very demanding job for all those years. Because, let's be honest, being a caregiver is a demanding job in and of itself. I know part of it was accomplished by being perenially sleep deprived. And, I pretty much always had a neverending to do list that nagged at me. No longer am I tired and behind on things. Also, I seem to be slowly but surely gaining back all those pounds I lost in my early 40s. Unfortunately, the additional discretionary time in my day hasn't resulted in my getting any exercise. This needs to change.

I've got some stories I want to share so will be posting these in the coming days and weeks. I look forward to writing them and hearing your thoughts on them.

Let's Call it a Day

2011-03-24T07:23:00.001-04:00

I see it's been 3 months since I've posted here. I think that, in and of itself, tells the story ... that I've lost the momentum and enthusiasm for these musings. I very much enjoyed creating this blog, using it as a means to tell stories and think through some of the challenges and my reactions to caregiving life. But, while I often think of things that I could mention on the blog, I no longer find myself sitting down and writing a complete post.

In addition to the fun I had with writing this blog, it also opened up to me an entire community of folks who deal with the same crap every day that Skip and I deal with. Wonderful folks whose friendship and support has meant so much, especially since they have walked in my shoes or rolled in Skip's chair.

Skip and I are doing well, as are the puppies. I am still unemployed. Skip still has MS, unfortunately. Ruby had back surgery in early February and she has recovered beautifully. Addy, now 14 months old, is wonderfully loving but very vocal, barking and whining a lot. So glad I don't have to deal with all that noise while on conference calls!

This winter, I spent a lot of time working on ways to reduce our living expenses. When I was employed, I always viewed my time as the scarce resource and was willing to pay others to perform services that would have used up much of my spare time. That's no longer the case, of course, my time is not so scarce any longer. Now, no more house cleaners. I bought a snowblower to clear the driveway rather than use a plow service. I then examined our expenses such as cable tv and trash pickup to see where we could achieve some savings.

Now, it's time to move on to revenue generation.One of the things that I've recently started doing with an eye towards money-making is bidding on abandoned storage units to resell their contents. Since this is the new thing for me in my life, I've started a blog about it, storageunitspelunking.blogspot.com. Well, started at this point means I've created the site and updated my profile. Posts to come soon; feel free to join me there!

And, finally ... Thanks for all your support!

Let's Call it Sabbatical

2010-12-13T13:50:00.000-05:00

One of the severance benefits offered by my former employer is the services of an outplacement firm for six months. Although I was lukewarm, at best, about getting a new job, especially a demanding one within my former career, I thought it couldn't hurt to learn more about job-hunting and, if I was lucky, finally figure out what I wanted to be when I grew up.

I went over and met with my career counselor a few weeks ago. He was a middle-aged guy a year or two younger than me who had worked in HR at the firm I'd recently been booted from. As such, he understands their unusual corporate culture. Since I don't plan to return there, that is of limited value, but at the very least he has some insight into the kind of work environment I'd experienced over the last 7 years.

During our meeting, I talked about my desire not to return to the kind of demanding job I'd been in. It created work/life conflicts that were stressful and increasingly unmanageable for me. And the job didn't offer any personal or professional growth. That I was thinking about retiring (as in never holding another job) or potentially finding just a "job" rather than getting back into my career work.

So we agreed to work together to see what path might work best for me.

In the meantime, he suggested I call my current state "on sabbatical" rather than "retired." Job hunting in the current day is largely managed through networking. If I tell my large network of former colleagues that I'm retired, they probably won't think of me if a good opportunity comes up. When he suggested it, I thought it was actually a perfect fit for my current state, since I am taking a hiatus from work. Who knows where I'll be at this time next year ... but for now, I'm taking a break.

What a Waste!

2010-12-12T14:09:00.000-05:00

Yesterday in our town, a young man who died in Afghanistan was buried. He was a Lieutenant in the Army and had only been in Afghanistan for a month. His death and funeral got a lot of news coverage on the Boston news stations so we were aware of his death even though we didn't know him or anyone in his family. By accident, Skip happened upon the local cable station live feed of his funeral yesterday and we watched quite a bit of it. Apparently, almost 1500 people including the Governor were in attendance.

Of course, at a funeral, the deceased's good points get the most attention, as is only right. But this young man must have been quite a wonderful person, based on the stories and reminiscences related during the service. And, the turnout spoke volumes. There are about 18,000 people in this town, so almost 10% of the population (assuming most attendees were from here) attended the funeral.

I don't want to belittle the contributions this young man made to the U.S. And, to the contributions made by other service men and women who have died in service to the country. But, honestly, all I can think of is what a waste his death was; and the wastefulness of other deaths in wars.

What if they gave a war and nobody came?

So How's Skip Doing?

2010-10-18T16:17:00.000-04:00

In the last 3 months, while I've posted on a monthly, rather than daily, basis, I haven't mentioned much about Skip.

She is happy that I'm less stressed-out since getting laid off, but worries a bit about our finances. She trusts me to figure this out, though!

It's a lot nicer for her in the mornings that she doesn't have to "share" me with a work schedule filled with conference calls and deadlines. I enjoy our mornings together. We're both creature of habit and love the new routines we have.

She has been getting a bit restless to get out. Unfortunately, with the cooler weather upon us, the patio isn't the wonderful, relaxing spot it was all summer. Last weekend, we decided to try out a "chowderfest" at the Mystic Seaport Museum in Connecticut. It was a lovely day, weather-wise, a bit cool and breezy, but sunny. We enjoyed the drive there and back. Surprisingly, the food at the chowderfest was just "ok." We did take a walk around part of the museum after lunch and saw an exhibit of antique ship figureheads that were quite cool and I took a quick tour of a tall ship docked there.

MS does slowly but surely progress. Of late, Skip's hands are experiencing the biggest impact. Her fingers are weakening, making it harder to hold silverware and use the computer keyboard. On the left hand, the fingers are curling as well. We're working on stretching them a bit; I'm happy that I have more time so special projects like stretching exercises can be done without having it feel like one more thing being piled on top. I'm confident we can get them straightened out again.

Test Driving Retirement

2010-10-17T14:22:00.000-04:00

Years ago, in the naivete of youth, I thought I'd retire at 50. Then, it moved out to 55. Then, as Skip's disease progressed and we started having expenses I hadn't anticipated, such as for household assistance, I figured we were looking at many more years of employment before I could retire ... would probably have to delay until 62. And, since I worked at home, I figured I was extending the years during which I could work without issue, since I could care for Skip intermittently during the work day.

I should point out that I've pretty much wanted to retire since I began working. I know there are some people out there who don't want to stop working. I do not count myself among them. I've enjoyed aspects of all my jobs and found satisfaction from them in many ways, but always looked forward to the day when my time wasn't spoken for by an employer. Maybe this is because I've never found a job that I was passionate about.

After being laid off, as I thought about finding a new job -- learning the ropes, having all those new responsibilities -- the prospect of imminent retirement looked better and better. I've found it very hard over the last few years to handle the triad of responsibilities for caregiving, a demanding job and self-care. And, when anything got deferred on the margin, it was always the self-care that got kicked to the curb. I thought if I didn't have to manage a job, I might actually start exercising, cooking healthfully and getting more sleep, all things I'd stopped over the last few years.

Also, if it turns out we can't swing retirement financially, having a significant gap in my resume isn't likely to be a huge issue during this "jobless recovery." There are millions of folks in the US who have been jobless for really long periods of time. Otherwise, the President and Congress wouldn't have extended unemployment benefits for up to 99 weeks. (Unfortunately, this extension is only in force for the folks who were unemployment in May 2010.)

I am still browsing the career sites and the sites of companies that I know employ home-based employees. Keeping those options open while I give retirement a spin!

A New Phase Begins

2010-09-09T21:57:00.000-04:00

Today, I am unemployed. Yesterday, my employer of over 7 years laid me off and today was my last day of work. The layoff process was quite different from when I was laid off from another company in 2002. That day, there was an armed guard in the lobby of our office building to ensure we meekly accepted our booting. And, once we received word of our dismissal, not one moment more was spent working. Turn over your laptop and head out the door. Here, at least, I got one day to try and do a brain dump for my colleagues who will be left to carry on managing the 25 balls I had flying through the air.

I have experienced a lot of emotions over the last 36 hours. I'd say they are surprise, anger, sadness, relief, euphoria, bitterness, euphoria, melancholy, euphoria and a sense of loss as I bid goodbye to my work friends and my ability to exercise my professional skills (at least for now). It's been a revelation to me in the last day and half to realize just how much the demands of this job weighed on me; as the burden has gone the spirit has lifted dramatically. I see now that I can be happy again.

My severance package is generous and I do not have an immediate need to find a new job. This is a wonderful gift as I sit here at 54 and contemplate a time of respite. I want to take some time to 1) enjoy this period of freedom, 2) find ways to cut expenses from our day-to-life so our income needs drop and then 3) figure out what I can do for employment that will give me the flexibility to work from home and provide a measure of personal and professional fulfillment. This is a journey I'm looking forward to. Of course, there will also be plenty of time for relaxation.

Break Over, Back to Blogging!

2010-07-31T10:39:00.000-04:00

I stopped blogging, primarily because I was in a horrible funk. Perhaps the worst ever. I have come to some realizations about myself over the last week or so that have helped me emerge from that funk. So, I'm back to feeling positive enough about myself and my life that I can post once again.

* * * * *

My Dad's memorial service turned out to be excellent. When I had reviewed the program at my Mom's a week or so prior to the event, I thought there was so much music it would go on forever. However, most of the pieces were short, so it wasn't overly long. And, the brass choir (2 trumpets, tuba, french horn, trombone) that performed most of the pieces was absolutely wonderful. I enjoyed the eulogy as well. There was a lot of humor and reminiscence at the outset, but the minister wrapped with a wonderful and moving insight into my father's perspective on life:

He enjoyed almost everything he did - cutting brush, hunting, meetings, arguments, concerts, eating, taking naps. It seemed to me that any time I’d see John, regardless of what he was doing, he had a kind of half-smile on his face - working, playing, listening, talking. He embodied a sense that life was good.

I think his capacity to enjoy was the source of his confidence, his unquestioning conviction that things would work out, that we’d find a way, that, if we did our part, all would be well. John really believed that all would be well, and this is why, I think, we liked to be with him, and work with him and catch his faith in the future.

This rang so true to me. My Dad did have that positive outlook on life, but it wasn't just that some miracle would occur that would make everything come out ok, it's that we could positively influence our lives through our individual and collective efforts.

I used to feel that way, too. The long, downhill slide of MS and the unrelenting demands of caregiving have eroded that cheerful, positive outlook I once had. It is a goal of mine to regain that positivity. After all, we have a history of continually facing new challenges that we overcome. We can perservere despite all that MS has stolen from Skip.

Other updates ...

I ended up not speaking at the reception following the Memorial Service. I decided it was stressing me out thinking about it, so shed the stress by choosing not to. My sister spoke, she had prepared notes she read from, and did a lovely job. Lots of others got up and spoke off the cuff, most telling funny and moving anecdotes about my Dad.
Addy is 6 months old today. She's still a handful but a wonderful, loving puppy to have around. We were experiencing some real behavior problems, so a few weeks back had a woman who specializes in puppy problems come over for an hour and evaluate what was going on. She gave us some useful tips for getting better control over Addy and they've paid off beautifully.
My vacation, right after the Memorial Service, had two distinct phases. The first week, I was incredibly indolent, doing as little as possible. By the second week, I was able to dust off the to do list I'd prepared and actually got a few things done. Skip and I went to a nearby museum for an afternoon's visit. It's called the Higgins Armory, and specializes in armor through the centuries. I'd been wanting to go there for a long time and even Skip ended up enjoying it, though she was very disappointed in the gift shop at the end. I also had a chance to visit my Mom for a few day trips during the second week, avoiding the summertime weekend traffic to/from the Cape.
Yesterday was my birthday. Skip had seen a review on TV of a Mexican restaurant about 30 minutes from here that sounded excellent so we decided to celebrate it there. Skip was never much on spicy food until recently and now it's as if she can't get enough of it. The service was excellent, the housemade guacamole came in 3 different varieties (we tried each), each dish we had was very good and I even drank margaritas. I hardly ever drink, but I just wanted to break out of my set-in-stone routine for the evening, so we got a pitcher of Sangria Margaritas.

* * * * *

At the top of this post, I mentioned that I'd come to some realizations about myself. I know I often joke about being cranky in this blog, but the reality is that, of late, I've been angry a lot and it's no joke. And, you know what I've found? That expressing that anger just amplifies it, it doesn't dissipate it, as conventional wisdom says. And, if you try to step back, take a breath, and react appropriately to the situation rather that in an angry way, it often fails. So, I'm trying not to express my anger or act appropriately, but to just shut up when I feel angry. I'd say I'm succeeding about 70% of the time, but that's been a wonderful experience for me and for Skip as well, who gets to hear me rant and rave far too often.

Since taking this approach, I've felt a weight lift from my mental state. I feel angry less often. I feel less guilty about being angry and ranting. It's been so much easier to have a positive mental attitude when I haven't been walking through the world with a cloud over my head (like Joe Btfsplk in L'il Abner).

Now, if only I could lose a few pounds!

Vacation and the Memorial Service

2010-06-19T07:57:00.000-04:00

Today begins a two-week vacation for me (plus an extra day for the observance of the 4th of July) and, by coincidence, is also my Dad's memorial service, Skip and I are leaving the house early this morning to allow for the trip down to Cape Cod with an extra hour or so in case of heavy traffic. After all, we've hit the summer season and Saturdays are when weekly rentals switch over, so there can be a lot of traffic onto the Cape in the morning.

I am looking forward to and also dreading a bit the service. It will have a lot of music and a eulogy by an old friend of my parents' who is a retired Unitarian minister. I am very interested to hear the eulogy but know it will be very sad. Skip's companion, MW, offered to come along and help out since I'm going to have a lot of social/family obligations, especially during the reception to be held after the service. MW's sister is coming over to watch the dogs.

My siblings and I will probably say a few words during the reception. I've been thinking here and there all week about what I'd say and so far have some notes along the lines of "what my Dad taught me." These include things like how to wield an axe, how to drive a tractor, hard word won't kill you and how to age well. I'm struggling with how I'll get in some funny stuff and then some serious stuff without getting maudlin. Maybe, at the end, I'll not say a thing. We shall see!

Well, a million things to do before we head out, so I will wrap up now. Have a wonderful day, wherever you are.

Meet Miss Addy

2010-05-15T21:06:00.000-04:00

On Thursday, I brought home the newest addition to our family, Addy (short for Adeline). She was born on 1/31/10, so she's about 14 or 15 weeks old. Just like Ruby and Sally before, she's a black and tan piebald mini-dachshund. Unlike her smooth (short-haired) predecessors, though, this little girl is long-haired.

We found a breeder about an hour and a half from our home who breeds minis and had a number of piebalds that she was breeding for spring deliveries. In early April, she had a litter that had a tiny little red piebald that we tentatively reserved until I could meet her. Pretty much every day, we'd visit the breeder's web site to check out the picture of the girl, hoping for updates, as the breeder updates the photos of her litters as they age. A few weeks ago, Skip found Addy on the breeder's site. The breeder was selling her for another breeder, so they showed up all ready to go. We were instantly smitten. She stared out at us from the web page with her bright eyes in her dark, sweet face.

Addy is sweet and lovable. She's inquisitive, like all puppies, friendly and fearless. One great thing about her is she has a bit of the mountain goat in her. She'll run right up Skip's body in bed and give her a kiss. All the nurses and aids and Skip's companion, MW, love her. Right now, the only one who doesn't love her is Ruby. She is very unhappy to have some 4-legged competition in the house. She is softening a bit, though, as she let Addy curl up beside her while they both took a snooze earlier today. So, we're cautiously optimistic that Ruby will be loving to her new sister soon enough.

So nice to have a new spark of life around the house!

Sad News

2010-05-08T09:35:00.000-04:00

My Dad in the Fall of 1991, age 66

My Dad died on Thursday evening at the age of 84. He went into the hospital last Friday due to stomach pain and it was found he had a bowel obstruction. It was surgically removed on Saturday. Unfortunately, he never regained full conscious after the surgery, entering a state of "anesthetic somnolence." As the week wore on, his systems generally started to shut down and he eventually succumbed to respiratory failure.

My sister was able to spend quite a bit of time on Cape Cod with my Mom and Dad during that last week of his life. She'd give regular updates to my brother and me, at times hopeful and at times concerned with all the issues he was encountering. We're lucky she could spend so much time there, especially as she was once a nurse midwife and so has a good medical background and, more importantly, has a strong, "do it" personality. She kept in touch with a host of medical personnel arrayed in support of my Dad's health issues (though not always organized in support of them, something my sister tried to push them towards) and did her best to sort out for my Mom and the rest of us what was going on and what steps were being taken to help my Dad.

Early in the week, Skip and I tried to figure out the plan we'd use for her care if my Dad went far enough downhill that I had to take the 2-hour drive down to see him. MW was scheduled for Thursday but wasn't available on Friday. We had feelers out in a few directions to see what we could cobble together for Friday, but no Plan B was firmly in place yet.

Thursday morning, my Mom called to let me know my Dad was in respiratory failure. Because there was no plan to put him on a ventilator, his death was imminent, though no one could divine exactly when. I wrapped up some work stuff, ate breakfast, put my out of office notice on my email, got Skip fed, cleaned up and into her wheelchair, then showered and got myself out the door. That actually all took 3 hours, so I made it down to the hospital and the cardiovascular ICU by 2:30. My brother, his wife and two of his kids were there with my Mom. Also there was my parents' aid, AP, who provides wonderful care to my parents. They have basically adopted him, something they've done with special young people they've met all my life. Unfortunately, my sister, who did such yeoman work supporting my Mom and Dad all week, couldn't be there as she was in Vermont with her husband attending an event at the school of her two youngest boys.

When I arrived at my Dad's hospital room, his face was covered with a huge BiPAP oxygen mask, pushing pressurized oxygen into his lungs. His eyes were closed, his hands were limp. He appeared not to be conscious. My mom was there by his side. My Dad was a big guy, 6' 3", but I was struck by how thin he'd gotten. His breathing was quite labored. It was so hard to see him in this state. I wanted him to be alive but hated that he was struggling so much.

For the next 3 hours, we all became obsessed by the monitor showing heart rate, temperature, blood pressure, blood oxygen level and respiration rate. I hated that monitor but I was fascinated by its readout. My Dad's heartbeat was irregular and the rate varied a lot. His blood pressure slowly dropped, his temp slowly rose (up to 104 degrees F,40C), his blood oxygen slowly dropped.

Shortly after 5, we were joined briefly by a surgeon who was keeping tabs on my Dad. In the nicest way possible, he confirmed the situation was irretrievable but it was impossible to predict when death would occur. We decided to head off to dinner then. Those of us who weren't staying on the Cape with my Mom were planning to head home after dinner.

As we were finishing up dinner, the ICU nurse called my brother and let him know death was imminent, my Dad's heart rate was down to 20 beats per minute (before I forget, let me give a shout-out to the nurse, Denise. She was great. The ICU nurses only have 2 patients each, which allows them a lot of time with each. More importantly, though, she had a wonderful, caring temperament and gave much care and concern to my Dad and his family). We settled up and headed back right away, arriving about 20 minutes after the call. Unfortunately, my Dad had already died. I don't know how I would have felt to be in the room at his death, but I did feel badly for my Mom that she wasn't there at the exact moment.

Sadly, we trooped into his room and stood around his body. The human body should never be wholly still; it looks so odd to see no movement whatsoever. The nurse let us stay with my Dad for over an hour while we mourned. After a while, my Mom's minister arrived. Soon thereafter, we all left my Mom and the minister to sit with my Dad for a while before they transported him to the morgue.

So that's it. My Dad is gone and I shall miss him terribly. He was a larger-than-life Renaissance man. He had an amazing abundance of energy and drive which I was in awe of and wish I had as well. He was active in town government in my hometown for decades, he was active in the Unitarian congregation in town as well. When they retired to Cape Cod, they helped establish a new UU congregation and my father helped spearhead a drive to save it from financial ruin when it was still young. He designed and built the house they lived in on Cape Cod. When he was done with that, he acted as the general contractor for a Habitat House and then went on to help rebuild the Cape Museum of Fine Arts. He was on the board of a local foundation that funded college education for local kids and branched out into environmental grantmaking.

With him, our family cut down the trees to clear the lot for the house Skip and I now live in (I was about 6 when I learned to wield an axe). I worked with him over the years in his huge garden, picking rocks, spreading manure, harvesting, pickling, making jam and so on, endlessly over the years. One weekend in my teens, as the last kid left at home, he and I planted 2500 Christmas tree seedlings together. Yes, 2500 seedlings in one weekend. And it rained the entire time. When he decided to get into wine-making, he planted grapes that would flourish in our climate, built an arbor for them and then his own press.

I'm glad that in my later years, I was able to loosen up enough to tell my Mom and Dad, out loud, that I loved them. My Dad's love and affection for all of us was so clear. He was a strong family supporter, generous but expecting much from us. And, too, I'm glad that in the last few years, as he experienced growing health issues with his Parkinson's and other ailments, that I could help out both my parents by regular visits to the Cape, helping with paying bills and such, but mostly just being there for the chance to visit.

How Do They Do It?

2010-05-04T07:12:00.000-04:00

It's true that I often feel overwhelmed by my caregiving role. But sometimes when we joke about how the house can be like Grand Central Station, I realize that I get a lot of help every week. We have ...

Skip's companion, MW, who comes 10-15 hours a week. She is both company for Skip and a big help to me, handling piles of laundry, dishes and dinner. On the Saturdays that I go to visit my parents on Cape Cod, when I'm gone for 8-10 hours, she stays with Skip most of the day. This is a nice, extended break apart for both of us.
Skip's aid, KH. Because Skip is under the care of a visiting nurse, Medicare pays for an aid. KH comes 4 times a week for 1-1/2 hours each time. She gives Skip a bath, washes her hair, gets her transferred to her power chair, changes the sheets, gets her a snack, etc. She's energetic and friendly and she and Skip keep up a constant conversation while she's here.
Daily nursing visits to change the dressing on Skip's wound. The wound nurse who has been working with Skip for at least 6 months is very knowledgeable and has been a key part of the reason Skip is as far along as she is in the healing process.
A wonderful couple comes every other week to clean the house. They go from top to bottom and clean everything.

There's some stress associated with having visitors to the house so often. But that is far outweighed by the services each provides and the care and company these folks provide to Skip.

What about those caregivers who have a similar load to me ... a full time job, caregiving responsibilities for someone who needs a lot of care, family finances to manage, house maintenance to attempt. How do they do it? I can't imagine the level of stress, the feelings of being overwhelmed and the constant fatigue that person must feel.

Steady State

2010-04-27T07:49:00.000-04:00

Steady state, that's what we're in now. We've got our Skip's-wound-is-small-and-healing-slowly routine settled in. It's a bit like being in limbo. The wound isn't all consuming, but it still shapes a lot of our daily lives.

We have our morning routines and our bedtime routines. We know when the nurses and the aids are coming. Every day, I keep Skip up to date about meetings and other work obligations so she knows my schedule. I know where she'll be.

This isn't our ideal. Skip wants to be up more, she wants to get out more, she wants the pain to go away. She's restless and doesn't feel quite human while spending so much time in bed. We both want to get rid of the hospital bed and buy a new bed that we sleep in together. I'd like to get out more and be a bit more engaged with the outside world. I feel lonely and isolated.

We both know this steady state isn't forever. It's working for now while we get the wound healed. We're counting on this state lasting for months, but not years. We'd both hate for this to be our forever state.

Windex

2010-04-25T12:01:00.000-04:00

Did you ever see the movie My Big Fat Greek Wedding? In it, the father of the bride, Michael Constantine, uses Windex to cure all manner of minor ailments, especially of the skin (as I recall). At the end of the movie, the groom quickly heals a pimple on the morning of the wedding with Windex, showing his embrace of the bride's kooky family.

Over the last few years, as we've come into contact with lots of nurses and aids, we've found that they all seem to have some product that's their Windex. Of course, the product varies from person to person, but they all have something that is the cure-all. This is especially true with respect to the skin.

The two most popular windexes we've encountered are Aloe Vesta and Calmoseptine, with Calmoseptine the most popular at the moment. Skip's aid is always dabbing it on various spots on her skin to head off any new problems. We love the care and attention that's behind the use of these products to take care of folks like Skip.

May there always be caregivers and their Windex.

Osteo? Probably No and the Vac is Retired

2010-04-22T21:21:00.000-04:00

At the wound clinic visit today (those biweekly visits sure do come around fast), the wound vac was officially retired. The wound looked good following the two-week vac holiday, with no concerning slough buildup, so the vac isn't likely to be required again. As I said before, it was a valuable tool for many months, but we won't miss it.

And, we discussed the osteomyelitis. The x-ray proved inconclusive. Skip doesn't really appear to have any significant evidence of infection, so there's no need to get out the big guns (IV antibiotics) to try and kill off something that might not even exist. The docs will keep an eye on her with her biweekly visits to the wound clinic and the wonderful visiting nurses will be able to be an early warning system with their daily visits for dressing changes.

Driving home after the appointment, it was lovely to see all the buds on the trees. We started spring here in New England with horrible weather, experiencing 10" more rain than normal in March. April has been up and down weather-wise, which is typical, but we're definitely experiencing more mild days now than cold. When we got home, Skip and her aid, MW, spent an hour out on the patio enjoying some cigars.

Steve and Bobrobert

2010-04-21T18:24:00.000-04:00

(I stole this photo from the picture gallery Steve has set up for friends to post photos.)

It's a small world, this world of bloggers who have MS or are caregivers to someone who has it. When I first started blogging, I was very interested in finding others who walked in my shoes, caring for a spouse or partner with MS. When I found Steve and BR's website, The Wheel of Fortuna, it was like a gift. There were these two folks in Austin, TX struggling with many of the same things Skip and I did day in and day out.

They've shared their lives through postings in word and in video (especially to give BR a voice). We've joined in their hope and frustration with each new round of pain management attempted for BR. We've enjoyed Steve's annual guilty pleasure orgy on his birthday. Personally, I've always enjoyed Steve's comments to my posts here. He writes poems, song lyrics, adds his own experiences in the same vein as my posting, and has helpful advice.

Things have taken a horrible turn for them over the last week. Now, Steve and BR are surrounded by friends and family as BR's body is wracked with an infection that may end him. If you haven't had a chance to stop by their site, please take a moment to check in and send your prayers, hugs and best wishes for them.

NUTs

2010-04-15T10:36:00.000-04:00

The May/June 2010 AARP Magazine has an article about Dr. Oz and his 6-month plan for getting healthy. To me, the most interesting month of the 6 was month 4 on managing stress. There's an "Oz Tip" that really resonated with me:

Among the major stressors in our lives are Nagging Unfinished Tasks (NUTs, I call them). Try to identify the NUTs in your life and then resolve to fix them, so they don't become a constant source of anxiety.

This is so true for me, and probably for many other procrastinators as well. I sometimes expend more energy thinking about and stressing about something I'm putting off than it would take just to get the darn thing done. I've understood and acknowledged this about myself for years, but, unfortunately, that didn't result in any behavior changes.

Interestingly, when I read this tip from Dr. Oz, it did result in a behavior change. I got up early on Monday and wrote a document for work that I'd been procrastinating on for a looong time.

Face it, I have enough stress in my life and seeing these NUTs as contributing needlessly to the stress load was just the trigger to prompt action.

Skip and Cranky in the 80s

2010-04-11T20:08:00.001-04:00

I recently got inspired to start scanning and posting old family photos to Facebook when I saw an old friend had started this on his Facebook account. I found his photos very interesting, especially the ones within one generation. The older ones, not so much, though probably interesting to his immediate family.

I've pulled out all the old family photos my parents have shared with me. I also began pulling together the photos from my youth and that Skip and I have taken over the years. Although my original intent was to scan family photos from prior generations, I have been drawn to the ones that I'm in or that Skip is in. As usual, I am my own favorite subject!

I thought I'd post some snaps from the 3 decades in which Skip and I have been together, the 80s, 90s and the 00s. Too much for one post, so I'm breaking them up over 3.

* * * * * * *
Skip and I met in August 1981. We began living together two weeks later. We were both 25 when we met. In the 80s, we moved 9 times. Each move was to a different apartment until our final move in 1989 when we moved to the house we live in now. Our apartments were in Boston or surrounding cities. We each had a number of job changes, as well. Skip was a systems analyst, a bartender and bar manager and a chef. In 1989, she retired due to her MS. I was a secretary, student, programmer then consultant.

During most of this decade, Skip's symptoms, if she had any, were minor. She loved to golf, so I learned how to play, though I was never good at it. We played with her father, who also wasn't very good at it. Once, we vacationed with Skip's parents at a golf resort in New Hampshire. We loved to take long weekends at bed and breakfast inns in Vermont and go antiquing. We had a good-sized circle of friends and we loved having them over for small dinner parties where we ate a lot of great food and drank a lot of wine. Skip could drive and was very independent, going out and about on her own with regularity.

This photo of me and the one below of Skip were taken in October 1981, on our first weekend trip to Provincetown, MA. It's on the tip of Cape Cod. Wow, so young!

These photos were taken in our last apartment, probably in 1987. Taken by a photographer who was trying to publish a book of photos featuring gay and lesbian couples. The book was never published. Skip is in her classic attire from that era: polo shirt, v-neck sweater vest, jeans and Reebok sneakers. I can't believe how long my hair was.

For our 7th anniversary, we put together a little dinner party at a gay restaurant in Boston. Our roommate took some lovely photos of us before we all headed out to dinner.

In 1989, at our current home, with our first dachshund, Sadie.

Vac Be Gone!

2010-04-08T18:45:00.000-04:00

The Japanese Maple buds are now transforming to leaves!

We had a successful, though not entirely satisfying, visit to the Wound Clinic today. The tunnel remained at the same depth as on the previous two visits. We confirmed the radiologist had read and commented on Skip's x-rays as if we were looking for evidence of osteoporosis rather than osteomyelitis. A nurse in the clinic will speak with the infectious disease doc to have him request another reading so we can find out if there's anything worrisome in the pictures.

The best part of the visit was the removal of the wound vacuum. We're taking a "vac holiday" that may become a vac retirement. From the plastic surgeon's perspective, the value of the vac has diminished, and it's time to move on to another therapy. Also, Skip's skin around the wound is starting to get irritated from the continuous covering with tegaderm. So, they packed the tunnel with an anti-microbial tape, put some gauze on the outside and it was done. We'll still have a nurse come every other day to change the dressing, but it will be much easier and quicker than the changing of the vacuum's sponges and drape.

Skip is quite pleased that she will no longer have to hear the vacuum gurgling 24 hours a day, as it has been for the last 4 months. (At night, our bedroom is alive with white noise from the vac, the air blower for her mattress and a fan. This is good for me to help drown out some of my tinnitus.) It definitely was a valuable tool in the wound healing process, but we're not sad to see it go.

Nothing Definite on the Osteo

2010-04-07T19:37:00.000-04:00

I called over to the wound clinic today to find out if the radiologist had read Skip's x-rays from Friday. Apparently, they were read yesterday. Based on what the radiologist reported, there were no fractures or dislocations. Okay, but what about evidence of osteo? No word on that.

Fortunately, tomorrow we have an appointment at the wound clinic with Skip's plastic surgeon so I expect we'll get more information. With luck, the infectious disease doc will have reviewed the x-rays by then and passed on info to either the clinic staff or Skip's surgeon.

Bottom line ... we still don't have a definitive answer. But, we don't have bad news, either.

Spring is Catching On

2010-04-05T18:53:00.000-04:00

The Japanese Maple on our patio knows it's safe to send out those buds. Leaves aren't far behind.

Wow, what a wonderful weekend we had here. The weather was sunny, highs of mid to high 70s F, just perfect.

Some friends invited us over for an Easter dinner so I ended up making our ham dinner on Saturday. Skip has been watching a TON of the Food Network lately and had seen a couple of chefs prepare asparagus by grilling it on the stove with just olive oil, salt and pepper. I did that with our asparagus and I don't think I'll cook them any other way again. I love asparagus and this was easily the best version of it I've ever had.

Great to visit with our friends. After dinner, we sat out on their deck and had a relaxed chit-chat until the early evening. By then, it had cooled off quite a bit so I was getting chilly. And, we needed to get Skip back in bed after being up and about for 6 hours.

I got us all settled in time to watch the Red Sox take on the Yankees in their home opener. I went to sleep expecting the Sox' first game would end up an L as they were behind 5-1 when I drifted off halfway through. I found this morning that they had rallied and ended up winning. Good way to start the season.

Osteo Again?

2010-04-03T10:23:00.000-04:00

There are some trends emerging for Skip that may indicate osteomyelitis (bone infection) is back or was never really eradicated while in the hospital/rehab. At Skip's last wound care center visit, the tunnel in her wound, which is really the only significant part left, had actually lengthened, increasing in length by 20% from the visit 2 weeks prior. This tunnel is what had exposed the bone to infection in the first place, as I understand it. The fact that it's been resistant to shrinkage and now has grown could be a sign of infection. In addition, she had a blood test that indicates she does have an infection somewhere. Yesterday, I took her to the hospital to have an x-ray. The infectious disease doc that we saw at the wound clinic ordered this. He said an MRI can show evidence of a bone infection for a long time after it's been wiped out; the x-ray will show if there's been bone loss. I suspect he'll read the x-ray on Monday and I hope we hear something definitive right away.

The prospect of osteo has Skip worried. I don't think I'd characterize how I feel as worried, but I am a bit concerned about what's required to wipe it out if the diagnosis is osteomyelitis and how that will affect our current, stable status. We'd be looking at another month-long course of IV antibiotics. Medicare, for some unfathomable reason, does not pay for home infusion! How misguided is that? What, they want to send someone like Skip who only needs IV antibiotics to an acute rehab hospital, pay for the care there, expose her to other infections where instead she could be treated at home with me doing most of the IV administration? I understand there are some ways to work around this Medicare constraint, but we'll have to cross that bridge when we get to it.

So let's assume we can do the IV at home. She'd have to have a PICC line inserted, and I expect that would be done in a fairly sterile hospital setting. Then, someone would have to train me on the infusion approach, including troubleshooting and when to determine the problem can't be solved by me and I need to get a pro in. Then, I presume she'd have to get the drugs administered twice a day for 28 days (this was the course used at the hospital). I expect there'd be complications, as she had them in rehab. The PICC line had to be replaced twice, or even three times, during the 4 week period.

Part of me is sort of interested in learning how to do this as I expect most of the time, it's very straightforward to administer IV's at home. Another part, though, is concerned about how much of a time eater this could be. We'll definitely have to work out a schedule of administration that is outside of work hours, which shouldn't be difficult.

Well, perhaps all this ruminating by me is unnecessary. Maybe the doc will call on Monday and say all is well. But as a character in a favorite childhood book, The Phantom Toolbooth, said: "expect the unexpected and the unexpected never happens."

Ham It Up

2010-03-31T06:54:00.000-04:00

We have no particular plans this Easter weekend. Well, I have a few small chores on the to do list, but not much else on the docket. The weather forecast is for mild, early Spring weather with no rain expected. (This is a huge relief as we've had 14" of rain in March ... the normal average for the month is 4".)

If it's mild enough, I'm going to get Skip to come out and keep me company while I attempt to get some ground cover planted in the front yard. It's my latest attempt to solve the problem of covering the bare earth.

On Sunday, I'll cook a ham. A small, quarter ham since it's just for the two of us. I love the ease of the spiral-sliced ham for carving and serving, though the meat is drier as a result. For Sunday, I think we'll have asparagus and scalloped potatoes with the ham. After a few meals with the ham, I'll use the bone for a split pea soup. To me, homemade split pea soup is one of the best soups on earth and ridiculously easy to make.

Here's hoping we have a wonderful, peaceful weekend. Hoping that for you, too.

Batter Up!

2010-03-30T07:06:00.001-04:00

I love baseball, especially Red Sox baseball. Opening day is this Sunday. The game is nationally televised, so it's been set at the ridiculous time of 8:00pm. I can tell you the last thing I'd want to do is sit in Fenway Park on an early April evening, freezing my butt off, even if it is opening day against the Yankees. I will be comfortably settled here, watching it with Skip, enjoying our first meaningful baseball game in many months.

In 2004, the year the Red Sox ended their 88-year long drought of World Series wins, we started going to games at Fenway Park. We discovered that the Park had set up a few wonderful spots for wheelchair fans and a few awful spots as well. In our very first visit, we found ourselves sitting in the front row, along the first base side, right beside the ball boy (who collects foul balls and such during game play). The seats were unbelievable. It was the clinching game of the American League Divisional Series, where the Red Sox swept the Angels in 3 games. It was a wonderful game, with lots of scoring, that went into extra innings. David Ortiz (Big Papi) hit a 2-run HR over the left-field wall (the Green Monster) in the bottom of the 10th to win the game for the hometown team. That was such a great feeling, to see the ball go over the wall and join in the celebration as the crowd erupted.

Another excellent spot for wheelchair seats is up in a relatively new area of Fenway, the right-field roof box. This area is set up with tables and waitress service. Along the top rung of tables, there are at least 3 tables that can accommodate wheelchair users, with the table seating 5. Skip doesn't have the best view of the action, but it is otherwise a wonderful way to take in a game.

Honestly, it doesn't get much better than a wonderful, sunny Sunday afternoon at the ballyard with your friends.

Caregiver Aids #1a: a New Way to Transfer

2010-03-28T14:35:00.003-04:00

My very first caregiver aids post was about the Surehands lift system we have in the bedroom and bathroom. To me, it is the most important aid we have. (The modified Honda Element, aka the Toaster, runs a very, very close second.) It is saving my back and it is saving Skip from falls.

The lift system as we had it set up used what's called a body support to hold Skip during the lift and transfer. The first post shows the lift motor and body support as it was set up in our bedroom last year. Below are a couple of snaps from the Surehands web site. When Skip got home from the hospital, the body support hurt her shoulders when lifting. We're not sure why. It certainly wasn't due to heavier weight, as she'd dropped 20 or 30 pounds while hospitalized. Nonetheless, we needed a different approach.

We tried using a sling and found that it worked fine. We originally started with a full body sling that holds Skip securely in a hammock style. The sling is made with mesh as shown in the second sling photo. Even though the polyester mesh feels fairly rough to me, Skip never complained about the feeling of it on her skin. After a few lifts, we had a good routine for getting the sling well positioned under Skip on bed before the lift and placing the hooks from the chains at the right level of each strap (there are 3 different spots on the strap for hanging the hook). The only problem with it is that it was impossible to remove the sling once Skip was in the chair. You can see the sling on the chair in the photos from the Skipping Out and About post a few weeks ago.

Skip's physical therapist, who was with us during our first try with the full body sling, suggested we look at a divided leg sling. The design allows for the removal of the sling once in the wheelchair and then, most importantly, it can be put back in place when Skip's in the chair. The user's guide shows putting the sling on in the wheelchair with two assistants, but I was able to handle it by myself without issue. The key is having the two long straps go underneath Skip's legs to hold her place safely while transferring. She's commented that she doesn't feel quite as secure in the divided leg sling while transferring, but you can tell she can't fall out of it. Also, I thought the fabric of this sling would be more comfortable for her, as it's got a soft nap like suede, but she did mention that it was a bit more uncomfortable than the big sling's mesh. It looks like our routine has settled into using the big hammock sling when Skip's staying home and using the divided leg sling when we're going out, so she doesn't have the big sling draped around her wheelchair when we're out and about.

Below is an example of how a person is positioned in a sling (I didn't ask Skip to pose for this post!)

Slings are readily available from a number of different manufacturers. By chance, these are both Invacare products. We're very happy with them. I bought both brand new and in the box on eBay for well below list price.

Caregiver Aids #13: The Queer Fork

2010-03-22T06:30:00.008-04:00

It's really a spork with a right angle bend, but MW (Skip's companion) calls it the Queer Fork, a name I like much better. We have other utensils with big handles and foam tubes to put on the silverware from our regular set, but this is the one Skip asks for the most. I have a similarly configured spoon on order from Allegro Medical.

Now if Skip is the one using this utensil, why do I have it as a caregiver's aid? Well, without utensils that are easier for Skip to grip, I'd be feeding her at most meals. This gives her more independence and me less work.

Tunes for the Road

2010-03-21T11:46:00.000-04:00

Two "nosy blogger buddies" asked what I had on my iPod for yesterday's trip to the Cape. Thought this was a good idea for a blog post, since as anyone who's been maintaining one of these for more than a month or two knows, ideas for posts can sometimes be a challenge.

My iPod contains an eclectic mish-mash of music. I've got just about all the Beatles' stuff done while they were a group, lots of female vocalists, like Joni Mitchell, Alison Krauss, Ella Fitzgerald, Bette Midler, Bonnie Raitt, Janis Joplin, Joan Armatrading and Laura Nyro. Lots of jazz of various stripes from Big Band to Avant Garde, and a good amount of classical. Some rock and roll like Little Feat and The Who. I've got a Kenneth Davis book about the Civil War and a Stephen Ambrose book about WW II also loaded up. For some reason, I'm a Civil War and WWII buff. When I was a kid, I loved listening to Tom Lehrer records and bought a multi-CD set of all his recordings, which I loaded up to iTunes. While his material is dated now, it's still a hoot to listen to occasionally.

So, you can probably tell from the artists I listen to that I'm in my 50s. I once read that your musical tastes are pretty much set in your teens, and that is certainly true for me.

Yesterday, driving down to Cape Cod on a warm and sunny day, I first put on Linda Ronstadt's album Don't Cry Now, published in 1973. It's got Love Has No Pride and Desperado, two songs she does that I especially enjoy. I recently purchased this from iTunes, so it was an easy pick for me to start the trip with. I then chose Emmylou Harris' album All I Intended to Be, another recent purchase, but I got a bit bored after 3 or 4 cuts, so I switched to Bonnie Raitt's first album, entitled Bonnie Raitt. To me, it's the 2nd best of all her albums (her 2nd, Give It Up, is my favorite). Lots of blues influence and a wonderful, wonderful listen. I looked up her discography and saw this album was published in 1971. Still great after all these years, though the recording quality is not very good.

When that was done, I put on Melissa Etheridge's Brave and Crazy, but found it a little loud for my tastes at the moment, so changed to Mary McCaslin, listening to her Best of album. She's a folk-country artist that I listened to a lot in the 70s. I also had the pleasure of seeing her perform at Passim coffeehouse in Cambridge quite a few times. Passim was (is? not sure of its current status) a great venue for emerging artists such as Joan Baez in the 50s and 60s. When I frequented it, in the 70s and early 80s, it was a wonderful spot for folk/rock artists.

On the way home, I first finished off Mary McCaslin's album. Then, knowing it was quite late (left my parents' at 9pm), I needed something to keep me singing and moving around so I didn't fall asleep. Aretha got me home. I started with Aretha Sings the Blues, which was published in 1980 but contains cuts recorded about 20 years earlier. I particularly enjoy Evil Gal Blues from this album. A review of it from Amazon comments that the songs are great but the recording quality is poor. Then I finished up the ride with Aretha's 30 Greatest Hits (You'll notice I have a bunch of Greatest Hits in my library. This is how I've managed to migrate artists from vinyl to CD and now MP3. Not all vinyl even gets reproduced in CD or MP3 form, so sometimes the Best of albums are your only choice. In other cases, it can be very expensive to get all the old stuff in the original albums, so I go for second best by taking Greatest Hits.) Aretha's 30 Greatest includes some wonderful covers such as Eleanor Rigby, The Weight and Bridge Over Troubled Water. Also, has Respect and Rock Steady, which, to me, is the best dance song ever recorded. If this album had Young, Gifted and Black on it, I'd think it was just about perfect.

So, there you have it, all you ever wanted to know about my listening to and from Cape of Cod, and much more. Happy listening!

Off to Cape Cod

2010-03-20T11:46:00.000-04:00

I'm heading down to Cape Cod today to visit my parents. It's a two-hour drive each way. The typical schedule, when I used to drive down every other week (not since Skip went into the hospital), is to leave here around 1pm, get down around 3. I do a few things to help out with bill paying and such. We'll have a nice dinner together. I leave around 8pm and get home around 10. I always enjoy visiting with my parents and they love me visiting, too.

Meanwhile, back at the house, MW will come over and spend the day with Skip. In good weather, they'll sit out on the patio and smoke and chat. MW will grill something for their dinner. They'll have an excellent time. We've planned that I'll get Skip up and out of bed, settled in her wheelchair, before I head out. MW can transfer her back into bed if and when she gets tired out.

Today, the weather is expected to hit the low 70s F and the sun is shining brightly. The iPod is charged and ready. Should be a wonderful day for a drive.

Spring Weather is Here

2010-03-18T06:30:00.008-04:00

Yesterday, Wednesday, brought lovely weather to us here in Massachusetts. It was sunny and warmer than than we'd seen yet this year, I think it got to the low or mid 60s F. Skip thought it would be a perfect day to get outside and take in the fresh air, then stink up that air with a cigar!

I got Skip up and ready around 1pm. MW arrived shortly thereafter, and the two of them went out for relaxation on the patio. They set themselves up in a sunny spot to relax, chat and smoke.

Checking out weather.com, I see we're in for mid-60s temps and no rain through the weekend. Nice! That'll make my drive to Cape Cod to see my parents a pleasure.

Another Step in the Right Direction

2010-03-17T20:47:00.000-04:00

Sunday afternoon we had dinner at our favorite Vietnamese restaurant. Woo hoo! It's been a long time coming, but Skip finally got there. We went with another couple, D&D, the folks who introduced us to the restaurant. We love them and their company and, for a good part of last year, every other Sunday afternoon found the 4 of us together eating Vietnamese. It was such a pleasure to be back there again.

Skip always gets the same thing. Papaya salad with shrimp and a spicy dressing; summer rolls with chicken and a sizzling beef and onion dish for the main course. I, too, love that Papaya salad, which I had followed by my standard: a huge bowl of chicken soup with tons of fresh vegetables. The soup is always served with a side dish of fresh mung bean sprouts, basil and another green I can't remember, along with sliced jalapenos and lime. Mmmm-mmmm, good. (In the spirit of full disclosure, I find the fresh jalapenos too spicy for me, so after the initial try of adding them to the soup, I leave those spicy suckers alone!)

Skip held up well and wasn't too weak. She did have one issue with the restaurant's silverware. Since her stay at the rehab hospital, she's been using silverware with built-up handles. We forgot to bring some with us and have made a mental note to do so when dining out in the future. Since she had some trouble with the utensils, I helped feed her part of the dinner, to make it easier for her. Although we were in a restaurant with other patrons nearby, she didn't seem self-conscious at all that I was feeding her.

After dinner, we headed back home, bellies full and happy for our venture out for good food and a visit with great friends. Once home, settling Skip back into bed, it was great to feel that she'd taken one more step back on the path to feeling human again.

The World is Spinning

2010-03-14T13:53:00.002-04:00

Warning: I probably included way too much detail in this post.

I occasionally have bouts of vertigo. Fifteen months ago, I had two bouts in a two-week time period after having gone, I'd guess, about 15 years vertigo-free. This, combined with other symptoms like partial hearing loss in one ear and tinnitus in both, is a lovely condition I seem to have inherited from my dad, Meniere's disease.
When I had those two bouts in November 2008, they frankly scared me silly and I was very careful to limit caffeine and salt, both of which can trigger attacks. I had gone back to my old coffee-drinking and food salting habits, though, within a few months being attack-free.

The first attack occurred at an otolaryngologist's office while I was waiting for an audiology exam. I'd gone in for an appointment because the ringing in my ears had spiked dramatically in the previous few days, apparently a foreshadowing of the upcoming vertigo. I couldn't move my head without throwing up. They finally called an ambulance and had me taken to a nearby emergency room where I spent about 8 hours alternating between holding my head as still as could be and violent vomiting when I didn't.

Almost two weeks later, on a late Sunday morning, I felt the symptoms coming on again. I got Skip as settled as possible as quickly as possible and went directly to bed. During the 10 hours or so of the attack, I only threw up twice, each time I got up to go to the bathroom.

While I'm having one of these attacks, I can feel the world slowly spinning. My sense of position is gone and it becomes hard to walk upright. I spend most of the attack lying on my side with my eyes open, staring at a fixed spot. Things slowly rotate around that spot.

Thursday night was different, though. Earlier in the week, I'd been having a bit of mild vertigo, nothing nauseating, just unsettling. Then, on Wednesday, my ears felt plugged up and I thought that was the cause of the mild vertigo. That day, hearing was very difficult yet I was hypersensitive to sound. Whenever I'd go in to help Skip I'd have to make her either turn down or turn off the tv because the sound of it was so annoying. Thursday morning, the pressure was gone and things seemed pretty normal. But in the early evening, the vertigo came on with a bang and I knew I was in for trouble.

At first, the vertigo attack started out as the previous two had ... if I kept my head still, I'd keep from puking. But a few hours into it, it was like a switch turned on and I couldn't stop throwing up even if I held my head still. Also, I couldn't close my eyes to try and rest as that made the spinning more intense.

Skip needed some assistance, so she called MJ, the aide from the private pay agency, and she came over to help out for a few hours. She mostly helped Skip, but it was wonderful to have someone come over with an extra blanket and to change the bowl I was clutching.

In the morning, I was able to sit up then stand up without too much discomfort. I felt washed out and weak but the world had stopped spinning. I took most of the day off work and spent a good deal of it lying down, sometimes napping. Skip had smartly arranged with MJ for her to come for 3 hours that morning, so I was able to completely focus on resting and recuperating.

I am hoping mightily that history does not repeat and I have another attack in 2 weeks! I've cut out caffeine and am watching my salt intake. Who knows, I might even go back to the otolaryngologist to see if there's something he can recommend! I'll have to pay close attention to any of the symptoms that foreshadow vertigo so we can have a little forewarning to arrange for help.

Can You Believe It's Been a Month Already?

2010-03-11T06:23:00.000-05:00

Our little Sally died a month ago today. I find that shocking, that so much time has elapsed and the sadness of missing her is still so sharp and fresh. The shock of her loss can come through the smallest of things. The other day, I opened the drawer in the kitchen where we keep the dogs' collars and leashes to get out the tape stored there. I was so sad that Sally didn't run out to the kitchen and up to me, dancing on her back legs, hoping we'd get out for a walk. She knew the opening of that particular drawer often spelled good things for them.

With the loss of Sally, it's interesting to see how much she drove the actions of the two pups. For example, the dogs regularly barked throughout the day at trucks going by on the street, whenever cars came up the driveway, if a particular leaf blew outside (in other words, sometimes the barking seemed to be for no reason). Well, that was all driven by Miss Sally, who was very engaged with the outside world. Ruby hardly barks at all. She'd rather stay nestled with Skip on the bed then bother to get up and bark. I used to be embarassed with the pups' barking when we got dinner delivered. Last night, the food was delivered with nary a peep from Ruby. She didn't even bother to get up until I already had the food in the kitchen and was starting to put it on a plate for Skip.

Sally claimed me as her "human." This made it difficult for Ruby to be comfortable getting loving from me. You could always tell she was a bit nervous when I was snuggling just her, worried that Sally would come over and intervene so all the love would be sent her way. Now, Ruby knows she has no competition so is much more comfortable getting love and affection. She even sometimes snuggles along my thigh on the couch, the spot that was always claimed by Sally.

Even though they had a funny dynamic at times due to Sally's alpha-ness, we loved having the two pups together. They played together quite a bit, snuggled together throughout the day and you can tell Ruby misses Sally's company, just as Skip and I do. We plan to get another dog of the same breed (smooth mini-dachshund) and similar coloring. We thought a bit about buying an adult dog to avoid some of the challenges that come with having a puppy, particularly housebreaking, but we decided a puppy would be best. We want to start the spoiling in the dog's formative months! We've found a breeder within a few hours' drive of the house who breeds mini-dachshunds who will likely have some piebald (that's the coloration of Ruby and Sally) puppies ready for adoption in the May/June timeframe. By then, we'll be fully into spring so the new girl can spend a lot of time outside while her bladder is small and the urge to pee is strong. After all, we're expecting by that time that Skip will be spending more time out on the patio, as she did last year. I plan to take some vacation when the puppy first gets here so I can concentrate on housebreaking and such without work concerns competing for my attention.

A new dog will never replace Sally, but we will love her and welcome her into our home, knowing that two dogs are definitely better than one.

Skipping Out and About

2010-03-07T14:07:00.001-05:00

Yesterday was a milestone day for Skip, as it was her first time out of the house for something other than a doctor's appointment since getting home on January 14th. As you can see from the photo below, she was long overdue for a haircut.

After the haircut, we had some extra time before Skip's aide was due at the house. Skip felt good and the weather was sunny and warm, a wonderful early spring day. So, we headed off to a spot we used to love going to for breakfast, hoping they'd still be serving it at mid-afternoon. Fortunately, they were and Skip had a version of eggs benedict and I had poached eggs on hash. It was so great to be at a restaurant and look across the table to see Skip. That hadn't happened in far too long.

The only sad moment of the trip was coming home and being greeted by only one pup. Ruby was happy to see us, but we miss the jumping and exuberance of the lovely, departed Sally. I was probably projecting my own feelings on Ruby, but she did seem a bit subdued and sad when I let her out of the crate she and Sally shared when we left them home alone.

Skip's a good sport to have let me take this photo!

We're ready to head out to the hairdressers ...

Ruby taking it all in from the vantage of Skip's vacated bed

I took this photo to show Skip's newly shorn head, not realizing the shadow obscured the 'do. D'oh!

Order placed, just waiting for the eggs benedict

Ruby With Her Peep

2010-03-03T20:26:00.000-05:00

Since Sally's death, Ruby has begun spending most of her waking hours with Skip. Today, I couldn't resist taking some snaps of her snuggled up to the back of Skip's legs.

The girls in comfortable repose

Ruby stretching it out (you'd never believe I just trimmed her toenails last week)

The picture of comfort and relaxation

Loving Works Better Than Crankiness

2010-03-02T21:02:00.000-05:00

I know it sounds like blasphemy that I'm suggesting a different approach than crankiness, but I'm doing it anyway. I was getting tired of myself, with my crankiness and ill temper. It was sinking me deeper into the depths. More importantly, I realized how much of an effect it was having on Skip. She was growing more and more unhappy, confined to her bed with me as her main source of human contact. And that human contact was, frankly, an unhappy crank.

So we're both making an effort to be loving. I'm responding to requests with more openness, rather than a put-upon perspective at the first hint of a new task. Skip is showing more appreciation and acknowledgment so I feel more loved.

We're in this together. For a few weeks, we've been individuals unhappily existing in the same sphere. Now, we're reforging our partnership. We're definitely in this together and need to make sure we're building each other up, caring for each other in this highly demanding life we lead.

No Respite for the Weary

2010-02-27T08:48:00.000-05:00

Took my business trip. Everything at home went just fine, as I had anticipated. I know Skip was nervous before and during the trip, but everything worked out perfectly.

But the hoped-for respite didn't bear any fruit. I came home and felt the same burdens fall back on my shoulders within just a few minutes of my arrival and, most importantly, I didn't feel the 2-day absence from the house put me in any better position to bear them. It always sucks when hopes are dashed on the rocks of reality.

Heading Out of Town

2010-02-20T10:25:00.000-05:00

I'll be taking a short, two-night business trip this week. Heading out on Tuesday afternoon and returning on Thursday evening. Despite the fact that the full-time care for Skip in my absence is expensive, I am looking forward to the trip quite a bit, primarily for the caregiving break it will provide.

From a work perspective, it's a low-stress trip. It's two days of internal meetings, so no client stress. I will spend the time with people whom I like (mostly) and it will be good to see some colleagues in person that I normally only interact with on the phone, in email and via instant messaging. I had some prep to do for one small part of the meetings, but the rest of the prep was done by others (yay!). The biggest stress, work-wise, is ensuring I have decent clothes to wear and comfortable shoes. Since I've been gaining weight of late, a lot of my decent clothing is a bit snug now and I've purchased some new, larger blouses and dress slacks in anticipation of this trip. And, I spend most of my time now in bare feet or slippers, so wearing shoes for 3 days straight will be a challenge.

For some reason, the fact that Skip is virtually 24/7 in bed makes me more comfortable with having others provide care in my absence. I think this is because there will be no transfers that could be an issue. MW, Skip's aide, will be here about 2/3rds of the time I"m away, from mid-afternoon through the night into the early morning. From 7-3 each day, we'll have a home health aide in to take care of some of the "heavy lifting" of caregiving.

This is the first time I'll be taking advantage of a new program offered by my employer. If you need emergency dependent or elder care or have a work obligation that requires additional coverage in your absence, you can get this coverage up to 20 times a year at a fraction of its actual cost by going through this work-sponsored program. Where we'd normally pay $27 per hour for an agency home health aide, using this service I only pay $8 per hour, my employer picks up the difference. This is a national program that works with local day care centers and home care agencies to provide the care.

When I first called to find out how to make arrangements and register for the program, I asked if the agency we normally used for coverage in a pinch was on their list and found out they were not. We were disappointed, as it meant there wouldn't be a chance for having the aide, MJ, that has been coming for 5 years. Skip wouldn't have the comfort of a familiar face and would have to train the new aide on everything. Imagine my surprise when I got a call on Thursday telling me the aide had been scheduled, and it was MJ! I'm quite delighted that Skip will have a familiar face, someone she likes and is very competent, come and help each day. The only thing I'm worried about now is how she'll keep MJ occupied for 8 hours each day as she is a whirlwind and a ball of fire who always likes to keep busy.

This leaves, really, only one concern for me. That is, the wound vac dressing. The wound vac works with a sponge inserted into the wound that is covered by a Tegaderm drape. Tegaderm is like the adhesive part of a bandaid, only much lighter. The dressing is changed every 2-3 days. It's being changed today, then again on Tuesday, the day I leave. On the days between dressing changes, leaks often occur that require minor patch jobs by me. I remove the small bits of dressing that have become damp and need to be changed then apply a strip of Tegaderm to restore the seal. If I'm not here, there won't be anyone to do the patch jobs. As a result, I expect a wound nurse will be needed both days I'm away, once to make leak repairs and once to replace the dressing completely. I've already discussed this with Skip's wound nurse so she's aware an extra visit will probably be needed.

So, it looks like my trip will be a good break for me. No stressful work stuff and few worries about the situation back home, knowing that Skip will be well taken care of around the clock. I look forward to spending time alone in my hotel room, relaxing and having no caregiving tasks awaiting my attention.

Back to the Wound Clinic

2010-02-19T07:12:00.000-05:00

Last Thursday, the day that Sally died, we canceled our wound clinic appointment. Neither one of us was really up to it. Since Skip's wound has been progressing beautifully, it also seemed to be a very low-risk move.

So, yesterday found us back at the clinic for Skip's rescheduled appointment. Skip's aide, MW, came over about an hour before we left to give me a hand in the final prep to get Skip up and out. (I'm not exactly sure why, but getting Skip out of bed nowadays seems like a much bigger effort than before she was hospitalized. I think it's because it's no longer part of our regular routine and more of a special occasion.) The sling is working very well for the transfer and causes no pain for Skip at all.

At the clinic, once we got Skip settled in on the stretcher, the wound nurse removed all the old dressing and took measurements. While the wound hadn't shrunk as dramatically as in prior visits, the key measurement of length of the tunnel was smaller, so that was good news. The plastic surgeon came in and gave us a warm greeting, he is a very warm and friendly person. Last week, he called to give his condolences about Sally's death and he again brought up it to say how sorry he was. When he looked at Skip's wound, he declared it "superb," so everyone remains quite pleased with the healing progress.

In two weeks, when we return to the clinic, we'll meet with the infectious disease doc who consulted on Skip's osteomyelitis when she was hospitalized. He can determine when to have an MRI to confirm the state of the infection (that is, confirming its eradication!) and check the state of Skip's tissue on the left side of her butt (the MRI that disclosed the bone infection also showed damage to her left buttock tissue, a precursor to a wound on that side that has never developed).

Unlike our last trip to the clinic, the weather yesterday was mild for February, above freezing and in the 40s F, so no issue with iciness. Skip felt good being out and about. During our unusually long wait before being seen, Skip remarked how much better she felt being up and out in the world. Perhaps our next outing can be a visit to her hairdresser to get her haircut, which is about 6 weeks overdue. While we were sitting there, I joked that I should get a Flowbee to give her a haircut. On my blackberry, I googled Flowbee, and there it was, on its own website, still in existence, even though I haven't seen it advertised on tv in years. Maybe she should just get a buzzcut now while she's spending most of her time in bed. That might be fun!

When Cranky Met Sally

2010-02-15T15:03:00.001-05:00

This photo was taken just a few days after we got Sally in December 2005.

What a tiny little peanut she was!

First, some background. We got our first dachshund, Sadie, soon after we moved into our home almost 21 years ago. When Sadie was 15, we figured she didn't have too much longer with us, so we started looking around for another dachshund to adopt. Skip had been looking around at the websites of different breeders and had come to love the piebald coloring. She found a 1 yr old piebald female that a breeder in Texas was selling. Skip worked out the purchase, and Ruby was shipped up to us via Continental Airlines, which has a good animal transport program. I picked Ruby up at Boston's Logan airport in February 2005.

Sadie and Ruby got along well. Ruby is very mild-mannered and so was Sadie, so there wasn't any jockeying for primacy. Sadie lived until May, dying shortly after she turned 16. We had loved being a two-dog household so began the hunt for another dog. Skip found Sally on the website of the Texas breeder and we arranged to have her come up again via Continental. She was 4 months old when she came to our home.

Sally was scheduled to arrive in the late afternoon. I headed over to the Continental baggage pick up to meet her. When they confirmed who I was, they brought out a tiny pet carrier. I was shocked at how small it was, it was more appropriate for a tiny cat than a dog. I looked inside and there she was! A tiny, shivering puppy.

I took the crate to the car, and placed it on the seat beside me. I cranked up the heat. When we got Ruby, the breeder had cautioned that we not take our new dog out of her crate until we got home. This would avoid any opportunity for the dog, who could be frightened, to run off and get lost. But in this case, I didn't take that advice. Here was a 4-month old puppy, who'd just flown up from a warm climate to a freezing cold place on a 3-hour plane ride. I couldn't leave her cold and scared in the crate all the way home. I opened the crate and took her into my arms. She clung to me. She was beautiful, tiny and sweet. I unzipped my jacket and held her close to me, so she could get some warmth. I could not put her back into that crate for the drive home. I knew it wasn't the safest thing I'd ever done to drive the hour home from the airport holding a tiny puppy, but I did anyway. When we got home, she didn't want to be far from me, and stayed in my arms most of the evening.

With that rescue of Sally from the crate, from holding her close to me for the drive home, from keeping her with me through the first evening, a strong bond was formed. Sally wormed her way into my heart right from the first moments of her life with us. I liked to joke that she "owned" me as I was completely helpless to resist her. And, the feelings went both ways. I was definitely her number one, and when she was nervous, she wanted most to be with me and get comfort from me.

Dogs bring so much joy to our lives. We were lucky to have Sally for even a short time.

What Do You Say When the Unthinkable Occurs?

2010-02-11T12:28:00.000-05:00

This morning, our wonderful and beloved Sally died. Just two weeks ago, I took her to the vet as she was out of sorts. Blood tests came back normal and we thought it was probably a back or neck strain from all of her jumping around, especially as dachshunds are prone to back problems. As the days progressed, her symptoms were minimal in the mornings, when she pranced around like her old self, but would come on more as the day progressed. The afternoons would find her sacked out on my bed, sleeping, with some tenderness and discomfort if you tried to move her.

Monday afternoon, when out in the yard to pee, she seemed to be experiencing a higher level of pain than I'd seen before. On her way back to the house, she stopped walking a few times as if it was quite painful for her to continue. Tuesday morning, she was extremely sensitive to any kind of motion, either her own or mine. That afternoon, I took her over to the Tufts animal hospital, which is a high-powered veterinary teaching hospital about an hour from here. We went there when our now-deceased dachshund Sadie needed back surgery. I thought we were in for back surgery in Sally's instance as well. The vets that examined her thought that likely too, as her symptoms were consistent with a herniated disc in her neck. They said she'd get a CT scan on Wednesday morning to confirm the diagnosis.

Sally needed anesthesia for the scan. About half an hour after the anesthesia was administered, she stopped breathing on her own. They breathed manually for her for about an hour, but she never took over breathing for herself. They put her on a respirator and set her up with fluids to help flush out the dye used for the scan, in case her problem was due to an allergic reaction. They also began treatment for her real malady, meningitis, that was identified as a result of the scan. But, as the day progressed, her status remained unchanged and the prognosis grew more dire. By early evening, we decided there was not really any hope for a recovery but had the hospital keep her on the respirator through the night. That way, I could go to the hospital in the morning and, assuming no miracle occurred, would be able to say goodbye and be with her when she died.

Two dear friends drove me over early this morning while a third stayed with Skip. When we arrived, the vet neurologist told us that Sally's situation had further deteriorated overnight as she was no longer able to control her electrolytes or blood sugar. Clearly, the condition was unrecoverable. We went in to the ICU to see our little Sally girl, stroke her, give her a kiss and cry while we said our goodbyes. They gave her the injections to euthanize her and, poof, in a moment, she was gone for good.

Goodbye, Sally, we will miss you more than you could possibly imagine!

You'd Be Depressed, Too

2010-02-01T21:45:00.000-05:00

There's been this nagging thought in the back of my mind for a while that I'm depressed. I've finally let that thought out, to the forefront of my mind, to get some analysis in the light of day. Yes, I am. I find little pleasure in things that I used to enjoy, my appetite has changed (increased, unfortunately, so I'm depressed about putting on weight), sleeping habits have changed so I wake up much earlier than I need to so I can lie in bed and stare at the ceiling, and, worst of all from my perspective, my ability to focus and concentrate has really taken a hit. So much so that it affects my ability to accomplish thoughtful work for work.

And, who wouldn't be depressed with all that's gone here in the Cranky and Skip household over the last 2 months, and even before? Skip's huge bedsore, the bone infection resulting from it, 5-1/2 weeks in the hospital, a whole new "paradigm of caregiving," (if I may be so bold to call it that, since the routines in our day have changed dramatically with Skip bedbound), and separation in the form of hospitalization then separate beds and Skip confined to the bedroom all day long (not a comfortable spot to hang out in for me). And then there's the concerns about the future. What will Skip be capable of physically when she is no longer required to spend almost all her time in bed? Will this bed confinement cause a permanent dimunition in physical ability that makes it even harder for us to get out and about, both for quick trips out for dinner/shopping and longer travel for vacations?

Well, to be quite honest, the Cranky of 10 or even 5 years ago wouldn't have been depressed about this. She would have looked at this as one more challenge in the long continuum of life lived with MS. She would have done all the things I'm doing today, like take care of Skip day in and day out, work her job, do all the tasks required to maintain the household. But without the overarching depression I feel every day.

The Cranky then had something I don't have too much of anymore: resilience. The ability to roll with the punches, to bounce back from setbacks. I think the unending demands of caregiving, the continuous grieving with each new physical loss to the inexorable progression of MS, the growing isolation have all eaten away at the resilience I counted on to help me deal with our life.

Hmmmm, I wonder if there's a way to rebuild resilience?

Sally Out of Sorts

2010-01-29T19:28:00.000-05:00

For the last few days, Sally has been acting out of sorts. Tuesday night, she didn't eat dinner. By Wednesday, she was shivering almost all the time (normally in the winter, she shivers frequently but not incessantly). She ate breakfast but, again, no dinner. MW and I both noticed that she was very clingy if you picked her up, atypical behavior, as she usually gets a bit squirmy after one kiss. Sometimes she'd stare blankly into space. I then began to think I hadn't heard her take even a sip of water in quite a while; though she was still peeing when we went out. Every once in a while, she'd let out a whimper when putting her down, like something on her body was tender. She seemed less active and bratty than usual.

So I took her to the vet today. At 4-1/2 years of age, it was the first time to the vet due to illness, so she's a pretty healthy pup overall. She hadn't lost any weight. The vet couldn't find any joint sensitivity. Her temp was normal. She wasn't dehydrated. Of course, when I put her on the vet's table, she stopped shivering. So, the vet drew some blood to test her for Lyme disease and all manner of other vile options, such as liver and kidney ailments. She sent me home with a deworming pill, which I gave to Sally earlier this afternoon. Tomorrow, we hear blood test results.

Heartened to know she's not dehydrated, which was my biggest concern, I have been able to look at the situation with a little less alarm. I am looking at the blood tests primarily as a means to assure ourselves that nothing serious is going on. I now suspect she strained something jumping and her shivering, clinginess and blank staring are due to that. If this is the case, then she'll probably be this way for a bit while she heals then slowly return to the happy go lucky, trouble-making Sally we all love.

Right now, Sally is snugged up against me on the couch, with Ruby on the other side of her. I've got her covered with a throw. She's asleep and the shivering is currently at bay. Skip wants me to get up and serve dinner, but I hate to leave Sally, because I know she'll follow me into the kitchen, plop on the dog bed out there and instantly begin to shiver again. I love the love and loyalty of dogs, following their humans around, but sometimes I wish she'd just stay in one spot and heal!

Surprisingly Successful Trip

2010-01-29T07:07:00.000-05:00

As my post yesterday indicated, I thought the trip to the wound care center on Thursday would be very tiring for Skip and a difficult one for both of us. Actually, this turned out not to be the case. The dry run of transferring from bed to chair and back again on Wednesday gave us some very important information that contributed to Thursday's success, because I knew the lift system alone would be insufficient for transfers.

With MW's assistance, the transfer out of bed went very well. I placed a completely open flat sheet on the wheelchair to help wrap Skip in during the trip over and, even more importantly, to use as a sling for transferring onto the stretcher at the clinic. Then, we positioned the body support under Skip. As we began the lift, we used the draw sheet on the bed (which was under her butt) for some additional lift, to take pressure off her shoulders. Doing that, we got her into the wheelchair with minimal pain.

While I packed up the wound vac supplies, MW got Skip totally wrapped for the trip. I gave her hair a good brushing (I mean, the poor woman has an incredible case of bed head!) and we were out the door.

It was snowing on the drive over, but only lightly, so it proved no impediment, and we arrived at the wound clinic a bit ahead of schedule. It was such a pleasure to have Skip in the car beside me. That hadn't happened in about 2 months! She was in good spirits and glad to be out in the world again.

When the wound nurse and plastic surgeon examined the wound, both were extremely pleased with the progress. The surgeon used words like "fantastic" and "excellent." He also confirmed that Skip wouldn't need a follow-up MRI to confirm her osteomyelitis (bone infection) had been wiped out for another 4-6 weeks. I'm glad that we don't have to figure out how to get Skip onto the MRI for the test yet. Better she have some time to get stronger before we face that.

Heading back, we were both in good moods. Skip didn't seem wiped out or weak at all, even though the examining room had been very warm, which typically makes her very weak. The drive back was a bit scary though, as we were unaware that the roads had turned to black ice in many spots until the car in front of us swerved into the other lane to avoid crashing into the car ahead of it. My brakes really pumped themselves to avoid a skid and we were able to avoid hitting any other cars. As we went along, it became quite clear that the roads were slick in many, many spots and the sanding trucks hadn't yet made it out to cover the ice.

Arriving home without further incident, we put Skip back to bed right away. She felt good enough to sit up longer, but we didn't want her on the wheelchair cushion for too extended a period. MW had prepped the bed, changing the sheets, putting out a fresh johnny and such. We used the sheet under Skip to help offload some of the weight on her shoulders and again transferred without issue. (It looks like, for now, we'll need to perform transfers with one other person to assist.)

All in all, a very successful trip. Skip wasn't stressed out by being out, she never got so weak she couldn't drive her chair herself and the wound healing progress got a definite thumbs up. Oh, and we avoided crashing the Toaster (aka Honda Element). Maybe she'll soon be ready for a trip out to our favorite Vietnamese restaurant!

Skip Out of Bed

2010-01-28T07:41:00.002-05:00

Until yesterday, Skip hadn't gotten out of bed since she got home. At the rehab hospital, she was supposed to get up for an hour a day, but that frequently didn't come to pass due to a variety of scheduling conflicts. We, too, were supposed to get her out of bed every day for an hour, but didn't attempt that until yesterday.

We have avoided it for two reasons. First, the positioning of the dressing/drape for the wound vac means it can be affected by the bending at the hip that occurs when she's positioned in the lift. During the first go round with the wound vac, a lift caused the drape to come unattached and the sponge in the wound to fall out. We were concerned about too many lifts having a similar impact. Second, her power chair still has the original foam-only seat cushion, which we believe is the primary culprit for the wound she has. A Roho cushion is on order but has not yet arrived. Her physical therapist counselled against much time in the chair before the Roho is here.

But, Skip has an appointment at the Wound Care Center today, so we needed a dry run in the chair to make sure she'd be able to make the trip. In the initial transfer from bed to chair, she complained of pain from the lift in her back. It wasn't severe enough to stop the transfer, so we successfully got her settled in without much ado. The intrepid MW was here at the time, so she provided good spotting support and held all the tubes (catheter, wound vac) during the transfer.

It was so exciting to see Skip in the living room! The pups were delighted, too. We got her settled into her regular spot, and they jumped up into their bed that is positioned beside her. They didn't move the entire time she was there. We did the transfer shortly after my work day ended, so Skip was able to stay up and have dinner in her chair. Soon after dinner, though, she started to feel weak and slumped a bit. So, we got her into the bedroom and I positioned the lift under her armpits and thighs to get her back into bed. That's when the trouble began.

As I started to lift her from the chair, she made me stop because her shoulders hurt so much. I tried repositioning the lift and started it again. Again, I had to stop. I am not sure what the root cause of the problem is, but I am concerned that she might have lost needed muscle strength in her shoulders and upper trunk that's needed for use with the lift.

I ended up calling the Fire Department and they sent over two able fellows who, using a sheet we slipped under her by lifting her only slightly, were able to complete the lift-enabled transfer without pain.

For today, MW will be here when I'm transferring Skip before going to the wound appointment. I expect we'll use the draw sheet on the bed as an additional support during the transfer. Then, it'll be under Skip on the wheelchair, so we can use it to assist in transfers at the doctor's and then when she returns home.

I think today will be very hard on Skip and expect she'll be quite weak. Fortunately, I can operate the joystick on her wheelchair if she is too fatigued to manage it. So, while it will be a trying trip for her (I suspect), we can get through it without her needing to do much on her own.

We learned some important things in that transfer yesterday. Skip needs to work more aggressively on exercising her upper body, and we can work with her physical therapist on that front. And, the body support for the lift system may be too much for her right now and we'll need to use a sling for a while. We do have one, that I purchased to use with the portable patient lifter during vacation. But, I'm not sure if it will work on the SureHands, so I'll have to investigate that over the weekend, when I have more time and patience.

Wish us luck today at the wound care center!

Work and Caregiving, Together Again

2010-01-25T20:51:00.000-05:00

Today was my first day back at work since Skip's return home. As noted a few posts ago, I had some concerns about my ability to balance the two and give a good effort at work.

A few good things have occurred over the last week to help alleviate some of those concerns. We started getting help with meals provided by members of our local UU congregation (so far two meals have been provided, with enough the second time to freeze for another meal). And, best of all, the home health aide started coming. This was a revelation, she is so wonderful! Since my last post, KH has come 4 times and is scheduled for 4 visits a week. She has relieved me from so much work, she does a wonderful job and she's chatty and cheerful. All my expectations have been more than exceeded. She bathes Skip, does her hair, helps her with her teeth, applies cream head to toe, changes the sheets, puts on a new draw sheet and chux, and leaves the place cleaner than when she arrived, all with a great attitude, laughing and making conversation throughout. On the days KH doesn't come, I do an abbreviated version of Skip's cleanup. As you can imagine, this has been a huge help for me, lightening my load and my spirits immensely.

Before today, I tried to get us both mentally prepared to do the work/caregiving balance dance again. The balance actually was achieved today. We were able to get a number of things done for Skip even before the work day officially started. Then, lunch, snacks and the abbreviated bath were all handled during brief breaks in the day. She was otherwise low maintenance, though she wasn't as cheerful as usual.

I was scheduled for 7-1/2 hours of meetings between 9 and 5 today, but two calls in the afternoon were canceled (hoorah!). This worked out well because Skip's wound nurse came just before 2 to change the wound vac dressing. I was able to be around during much of her visit because of the unexpected opening in my schedule.

I will say it was good to be back with a busy day that holds more than I can possibly do. In many ways, that's how I like my days. They fly by, I'm never bored, and I like figuring out how to get everything shoehorned into the day. Work also gives me the opportunity to feel a sense of accomplishment as I cross things off the to do list and to put my writing and speaking skills to good use.

All in all, it was a good first day back at work. Nothing too challenging emerged on either the work or home front, so that was a blessing. I'm hopeful we'll have a few more days adjusting to our new routines before something blows up and sends everything skittering sideways and throwing the work/caregiving balance out of whack.

But, it's been a long day and I am pooped. I think I'll turn in now!

Help From an Unexpected Source

2010-01-20T15:46:00.000-05:00

A day or two before Skip came home, I got a call from the minister at the church where we are members. It's the local Unitarian Universalist congregation (for those of you not familiar with UUs, it's on the far left end of the Protestant religion continuum). I went to this church as a kid, when my parents lived here in town. Skip and I started going there about a dozen years ago, but over the last 4 or 5 years have pretty much stopped participating. (It's funny, before we started going, my mother kept telling us to join, as there were lots of lesbian couples there. Turns out, she was right!)

While Skip was in the hospital, she'd asked that it be kept somewhat quiet so as to minimize the number of visitors she received. She prefers only visits from a few close friends and family members. As a result, word didn't get out to members of the congregation until near the end of Skip's stay.

Anyway, the minister, KL, called to give her condolences and offer support. In particular, she told me that some members of the congregation can actively provide support to families like ours at times like this. They can run errands, visit and provide meals. I welcomed the offer of help, especially if someone could provide a dinner here or there. I checked in with Skip, who agreed that would be most welcome, and I let KL know when she called back yesterday that we'd welcome the help.

This morning, I got our first call from a member of the congregation, checking in to see if there was anything we needed today, like an errand run or a meal. With MW cooking tonight, no need for a meal, so we're okay today. But, come Friday, when MW isn't working, I am hoping we'll be able to have someone stop by with a casserole. Frankly, I can't wait!

Caregiving is Challenging

2010-01-19T20:25:00.001-05:00

I'm mentally and physically out of practice in the caregiving role. And, Skip's needs are more significant now, while she's bedbound, then they were before going to the hospital. I'm struggling with meeting Skip's needs and also meeting some of mine.

While Skip was in the hospital, when I visited I watched a parade of aides and nurses coming and going, tending to her. Now, virtually all of that is being taken care of by me. The wound nurse has come a number of times to change the wound vac dressing, MW has been here for about 14 hours total since Skip got home. Other than that, it's all been me. Bathing, medications, food prep and cleanup, laundry and much, much more.

I start most days in pretty good spirits. This usually can get me through morning pills, breakfast and a bed bath. As the day wears on, though, the spirits dampen with the continuous caregiving responsibilities. I've hit the cranky wall at least once a day.

Right now, my life consists primarily of caregiving tasks, escaping into games on Facebook and sleeping.

Tomorrow, we'll have the first visit from a home health aide. She will handle the bathing, linen changing and such. This will help alleviate some of the burden I'm feeling. She should be coming 4 times a week.

My key objective through this week is to burn-in the care routines, getting them accomplished faster and more predictably so I'll be able to balance them equitably with work responsibilities that start up on Monday. That is a big objective and I'm not certain it'll be achieved. I think the sum total of caregiving demands will have to be reduced for me to give a reasonable amount of focus to my job. A job that will be more demanding than normal when I get back at it because I've been out this week. In short, I'm pretty concerned.

One More Day

2010-01-13T07:31:00.000-05:00

Skip's discharge is still a "go" for tomorrow. Looks like everything has come together well.

I bought a new twin platform bed for myself. It was delivered yesterday. Bought sheets and comforter for it as well.

The hospital bed for Skip is being delivered at noon today. They'll set it up in the bedroom then.

My brother and his son are coming mid-morning to help me move furniture around. They'll take apart our platform bed and haul it out to the garage (I plan to get rid of it and buy something better for offloading pressure as our next bed). We'll turn the bedroom carpet, vacuum places that haven't seen the light of day in 20 years and get the room ready for the two new beds. (Actually, the two dressers, desk and headboard haven't moved in more than 45 years, when my parents moved in. They left the bedroom set for us when they retired to Cape Cod. It's a great set. It's from a kit my Dad bought at Sears and assembled himself somewhere between 50 and 60 years ago. Much sentimental value.) They'll assemble the new twin platform bed for me. They'll also move some other furniture around to make more space in the bedroom. It's great to have tall, strong, strapping family members who are so willing to help out!

The wound vac for home use was delivered to Skip's hospital room yesterday. They'll get that attached when they change her dressing tomorrow.

Starting tonight, I'll be on a brief leave from work (the remainder of this week and all of next week).

The intrepid MW (Skip's aide) is lined up for today and tomorrow. Today, she can help with some of the final bedroom set up and such. Tomorrow, she'll be around for anything that comes up; I'm sure an extra pair of hands will be most welcome in Skip's first hours home. Also, I'm having groceries delivered (first time since Skip went into the hospital) to replenish the very depleted larder while MW is here so she can handle that, no matter what the schedule is with the hospital around discharge, final meeting, etc.

And that reminds me, really the only thing left to find out is timing of the meeting with her doc before the discharge and when the ambulance will be picking her up to bring her home.

It's Beginning to Feel Real

2010-01-06T17:26:00.000-05:00

Skip's discharge and arrival home, that is. It really is beginning to feel real and I can't wait for it to happen. It's only eight days from now, and I do believe she'll be coming home that day.

I had a long talk with Skip's case manager at the rehab hospital on Monday to talk about lots of transition things such as the special bed, the wound vac rental, any barriers to a possible discharge, visiting nurse, home health aide and PT/OT services at home and so on. We both walked away with various follow-up tasks, and based on the phone calls I've been getting, she's taking care of her end of the bargain.

I got a call yesterday from the company that manufactures and rents the Clinitron bed. Apparently, Medicare doesn't pay for these for home use unless the patient has used a different kind of bed for 30 days and can demonstrate inadequate progress using the other bed. So, they'll deliver a low air loss mattress and hospital bed frame, likely the day before Skip comes home, for her immediate use. Then, they'll keep in touch with the visiting nurse agency to get data that might support the upgrade to the Clinitron. Just that call really made it feel real to me. If we're talking bed options and delivery dates ... it's really gonna happen.

Skip is staying at the rehab hospital until the 14th in order to complete her course of IV antibiotics before returning home. I figured the only thing that would hold up the release was a determination that a longer period of IV administration was required. I hadn't heard anything about a follow-up visit with the infectious disease MD who worked with Skip in the hospital, so I gave his office a call on Monday. Turns out it's not too easy to determine if the infection is gone from the bone. His recommendation was to have the plastic surgeon evaluate the situation on Skip's next visit (tomorrow) and, from that, suggest likely next steps. I suspect what will happen is that Skip will come home with a prescription for oral antibiotics to keep the treatment going and then other diagnostic work will follow to evaluate the situation. I'd imagine this would include tests like another MRI to take a look at the hip bone.

We've already got a relationship with a local agency that has visiting nurses, home health aides and physical therapists. The hospital will write the orders for the care Skip needs and they can be the providers, which is good since we already know a bunch of the nurses. I think we're going to have a conversation about MRSA, though, before anyone gets their hands on my Skip.

I got a call today from a physical therapist who had evaluated Skip's wheelchair to see what pressure-relieving cushion should replace the existing foam cushion. They're looking at the mother of all Roho cushions, which is 4" thick with air bladders and will work with a local agency to get it. The PT pointed out to me something I hadn't been aware of. Now that Skip has had a pressure sore, she is at greater risk for recurrence because the healed skin never returns entirely to its original state. This makes extra care with her seating and pressure management a definite must.

I've also purchased a number of things we're going to need when Skip's here. Since she's going to be in bed 22+ hours a day, I've ordered hospital johnnies, bedpans and absorbing bed pads. I found a good cheap source for twin sheets on eBay and bought them this morning. I got special mugs and foam tubing to build up silverware handles to make it easier to eat in bed. This weekend, I'll be heading out to buy myself a twin bed to use while Skip's in the hospital bed. Then, I'll have to figure out what furniture needs to temporarily be removed from the bedroom to hold all the new stuff. I'm thinking, with the removal of our platform bed, this is also the perfect time to turn the rug, which is long overdue.

Yep, it's definitely feeling real.

My Little Shadows

2010-01-05T17:32:00.000-05:00

I'm a big woman, tall and fat, but I cast two little shadows all around the house. Their names are Ruby and Sally, our mini-dachshunds. Without Skip here as anchor (she doesn't move from place to place too often through the day so they can roost near her for big chunks of time), they're forced to shadow me wherever I go.

I am not one to sit too long in any one place during the work day. I think it's my short attention span that makes me go from room to room as I come up with a myriad of things to fill my day. When I head into the living room to sit on the couch and use my personal laptop, they stroll in soon after I'm in position. Sally, smaller and pretty athletic, will jump up on the couch like a cat and take up the primo position, laying alongside me, sharing body heat. Ruby will saunter in behind and come up meekly to the couch, waiting to be invited and then lifted up (she's the biggest "mini" dachshund on earth, weighing in at 20 lbs, so not a jumper by any means). She lies a bit to the side, soon falling fast asleep, issuing deep, contented snores.

When I get up from the couch, they both look up at me with expressions that seem to say, "what are you doing, we're warm and comfortable here ..." But, they give in to the greater need to be with human companionship and follow me to wherever I'm going.

In the kitchen, they have a big dog bed right near my work table. It's on the ground, near the kitchen door, so it's none too warm and, whenever I look down to see how they're doing, Sally is shivering. I try to put a throw over them to keep them warm, but often the act of getting up to get the throw causes them to be on the move again. Then, I get them settled back on their pillow and cover Sally from head to paw. Ruby doesn't get cold, so she doesn't get the full body covering.

They're all too familiar with the month-long routine of me heading out in the evening to visit Skip. Just before I head out, I'll send them out to pee. When they come back in, Ruby knows to go right into the crate. Sally has to be cajoled in, she's trying to delay the inevitable. When I come home, and open the crate door, they are so excited, jumping and showing their delight. It makes an otherwise empty house a lovely home to return to.

Rehab Routines

2010-01-04T07:55:00.001-05:00

I visit Skip each evening at the rehab hospital. Even on the weekends, I like to spend most of the day here at the house and then head over as it starts to get dark. During the week, I go over after the workday officially ends at 5pm. I typically stay for a few hours, primarily because I don't like to leave the pups in their crate for too long.

There isn't much to do in the rehab hospital. So, I've come up with some things I can do in Skip's room to keep busy.

Clean up. The aides and nurses have a tendency to leave junk on all available surfaces, including tables, the floor and the empty bed in the room. I organize all the junk, throw out the debris, and wipe up Skip's patient table and the guest table. With flowers, cards and gifts she's received, I've organized them, watered, thrown out as they've aged.
Prep water bottles. Skip needs to hydrate frequently with her Clinitron bed sucking a lot of moisture out of her body. Because she'd spill a glass of water, she uses big water bottles with sports caps. I rinse out and refill the ones she's emptied since my last visit.
Help with self-care. Skip loves to keep her nails short but can't sit up high enough to handle the trimming herself. So, I do that. So far, I've only clipped the skin once and it didn't draw blood, just the top layer. I also handle toenails. She gets dry skin and her elbows in particular are getting quite dry (the bed again?), so I apply a lot of cream when I'm there. (Her aides apply cream in the morning.)
Untangle cords. The phone, the TV controller/call button, the wound vac power cord, the wound vac hose from body to vacuum and the IV line are all cords that end up on or near Skip's bed. The IV line is kept away from all the other cords so no tangling there. However, every day when I come in it's mind-boggling to see how tangled the other lines have become. I like untangling them to ensure Skip the best access to her key lifeline: the call button. Since she can't walk, if she has a problem and can't manage to get the call button she's in trouble until someone stops by for some random reason.

Besides keeping me busy, it also helps us both feel better. Skip is getting some care from me, has her few square feet of space in better shape, and I get to be a help. Fortunately, though, I'm looking forward to only doing this for another 10 days, then we're gone!

Battling Ennui

2010-01-03T13:35:00.000-05:00

Well, I thought the term "ennui" was the best fit to describe how I feel. When I looked up the definition online, I knew it was a perfect match ... the Encarta dictionary defines ennui as: boredom from lack of interest: weariness and dissatisfaction with life that results from a loss of interest or sense of excitement.

Too much time on my hands? Too few things to do at home that can't be put off (I'm great at procrastinating)? Too much time alone? Sad my wife's not here at home with me? Concerned about the changes in progress for us and our lives? Feeling uncertain about how the first few weeks with Skip at home will be?

Yes to all of the above.

I am bored, weary and dissatisfied. I think I need to be back working 5 days a week with Skip here at home needing lots of time and attention. I think I need the uncertainty of our new routines and life solved so I understand our new rhythms and the demands that will be placed on me.

When all that's in place, I'll be cranky at times, but I won't be full of ennui.

Home Alone

2009-12-29T08:09:00.000-05:00

Yesterday marked three weeks since the day Skip was taken off to the hospital in an ambulance. Since then, I've been living here at home with no other humans, just the two pups to keep me company.

It's weird being here alone. And, it really is alone as the parade of people coming and going from the house has all but stopped since they were all here (save one) because of her health and care needs.

At first the dogs were very unsettled. They seemed pensive, as if waiting for Skip to reappear. The first few nights at bedtime they displayed the most confusion. Sally normally sleeps on Skip's legs, so she was really discombobulated, Ruby eventually settled into her normal spot at the head of the bed, between my pillows and Skip's.

I buy almost no food; I hardly ever cooked when Skip was here, now I have even less reason to do so. I need coffee, milk and cereal for the morning. I have been making vegie rollups for a late lunch. For dinner, it's either takeout coming home from the hospital or a snack when I get home.

The house is really, really quiet. In addition to the lack of people coming and going, there TV is hardly ever on. Skip always has the TV on, but I love to have it off. I've been watching football. And, I started watching a TV series called Criminal Minds that we'd never seen before. Other than that, nice and quiet.

I have few conflicts between caregiving demands and the rest of life here at home. I make a few calls to follow up on things with the rehab providers and to speak with Skip. Other than that, I never have to find a way to shoehorn everything into the day.

I'm not taking Ibuprofen anymore. Even though we have a lift system in the bedroom and bathroom that keeps me from having to lift Skip for transfers, I realize I still do a lot of moving Skip around when she's here. You know, for all those tasks of daily living where she needs my assistance. Not doing any of that now, of course, so my creaky shoulders aren't barking at me throughout the day. Now, they only remind me that they're screwed up when I get dressed.

The biggest difference of all is the time out of the house. Working from home, with Skip here, I was leaving the house only 2-3 times a week. It was primarily to run errands or go to Cape Cod to visit my parents every other week. Now, I have to put on clothes suitable for going out, put the pups in their crate and head out to Skip's hospital every day. Of all the changes prompted from Skip's stay in rehab, this is the best one for me. I was becoming a bit of a hermit, preferring not to leave the house if at all possible. It's good to be back out in the world more.

When Skip comes home (currently projected for January 14th), the dogs will first bark when they see her come out of the garage door on her way towards the house. Then, they will whine and jump all over her. They will be ecstatic to have her home. I will need to stock up on groceries. The TV will go on and the negotiations over what to watch will begin. I will again be balancing all the demands on me to satisfy all the needs of work, Skip and maintaining a household. After a few days, the Ibuprofen bottle will be back out on the bathroom counter. I can't wait!

Christmas Began at 2am

2009-12-25T22:51:00.000-05:00

What is it with 2am at Skip's rehab? Again the phone rang last night at 2am. Again, her blood pressure was low and they wanted to send her to an acute hospital ER. I tried to stop the madness, inquiring about hydration to get the pressure back up. They claimed they'd hydrated her and it hadn't brought the BP up to an acceptable level.

When I hung up the phone, I lay back in bed and started to consider the consequences of an ER run on Christmas morning. Figured this would lead to another admission and changes to some plans set up for the day. While I was contemplating who would need to be called as a result (though at a normal, human hour, to be sure!), the phone rang again. This time, it was the nursing supervisor informing me that Skip's BP was back up and the ER trip could be avoided. I was, if that seems possible, even more annoyed with this call than the previous one. In 15 minutes the situation righted itself and suddenly the drama was over? Feedback about this will be provided on Monday morning to Skip's doc and her case manager. There needs to be better management of hydration. Clearly, the reactive approach taken coming out of last weekend's debacle isn't sufficient. Proactive hydration via IV will be necessary.

Wound up, I couldn't fall back to sleep, so sat up for a bit. Finally went back to bed and slept until 8.

The original plans, thankfully, could stay in place. Our friends D&D took great care of us today by preparing a wonderful dinner, all plated for us, that I picked up at 1 to take to Skip. They also watched the dogs while I was at the rehab hospital. My brother and his family stopped in for a visit. I was so pleased they came by; it meant a lot to Skip and me that they did. The dinner was great. It was the best I've seen Skip eat since going into the hospital on December 7th.

I stayed with Skip until the early evening. After dinner she was drowsy and actually fell asleep twice. I chalked this up to poor sleep the night before. After picking the pups up from D&D's, I headed home for a quiet evening. With Skip in the hospital, I am able to watch all the football, college and pro, I'd ever want to see. Tonight's NFL game was a super snoozer, though.

Merry Christmas, Skip! And, Merry Christmas to you.

Christmas Eve

2009-12-24T21:01:00.002-05:00

When I was a kid, every Christmas Eve we traveled the ~20 miles into Boston/Cambridge and had dinner at the home of my aunt and uncle. They were my father's oldest brother and his wife, both doctors with no children. For many years, they lived in Cambridge in a house near Harvard Square, with my aunt's sister and father also residing there. The house wasn't kid friendly, the food was extremely esoteric, including goose stuffed with oysters and chestnuts and a capon, and I had very mixed feelings about the event. Parts of it I enjoyed, such as the other friends and family members from around the world who joined the festivities, that I'd never have met otherwise. Other parts I dreaded, such as the part of the evening where we had to sit through my aunt and uncle opening every gift they received for Christmas (their tradition was to open presents Christmas Eve rather than Christmas morning).

When I hit my early 20s, I purposely started entertaining with friends on Christmas Eve to continue the tradition of a celebration that night, but one that would be more to my liking. During our years of apartment living in Boston and surrounding cities, Skip and I entertained a lot and liked having our home be a gathering place for friends.

When we moved into what had once been my parents' house in the suburbs of Boston, we continued with our Christmas Eve dinners. Over the last handful of years, with the increasing caregiving load making entertaining here more difficult, we began having the party at the home of friends, but I still prepared a lot of the dishes, including the centerpiece ... a butterflied leg of lamb, marinated in a Julia Child recipe my mother turned me on to 30 years ago, then grilled.

Christmas Eve is a party night in my world. But not tonight. I saw Skip earlier today, but had to come home in the early evening to free the pups from their crate. Tonight, my Skip is alone resting in her rehab hospital room and I'm chillin' on the couch with the pups by my side. This is our 29th Christmas Eve together and the first we've spent apart. As Skip would say, "it's just not right!" (I wish you could hear her say it in her wonderful Boston accent.)

Merry Christmas, Skip! And, Merry Christmas to you!

Yep, I'm Human

2009-12-21T06:41:00.000-05:00

I hate to admit it, but I am human. This was brought home to me yesterday as I experienced a temporary meltdown.

I have been Superwoman for many years. I did it all. Managed a series of demanding consulting jobs over the last 25 years that frequently involved long days and lots of business travel. Helped Skip through 20+ years of progressive MS, figuring out new ways to deal with each new symptom that emerged, solving ever more significant problems. Became a full-time caregiver as her ability to handle the tasks of daily living fell away. I used to have a social and volunteer life as well. We used to entertain here and there, with Christmas Eve's special dinner of butterflied leg of lamb, scalloped potatoes and sauteed red cabbage my personal favorite (all of which I prepared). We were actively involved in the local Unitarian Universalist congregation for a while, I even served on the board for 3 years. We used to take vacations to distant places twice a year. And, I loved the planning of those vacations almost as much as taking them.

I was feeling pretty tapped out before Skip went into the hospital two weeks ago. The Superwoman cape was getting quite tattered, showing its age. The demands of caring for Skip have basically crowded out all the non-essential stuff and I've been feeling pretty careworn. The wound care, which involved daily visits from nurses, feelings of frustration and fear and additional effort, were piling on too much and I could feel the strain. With all this, though, Skip was at home and we had control over our daily lives and routines.

Now we're in a whole new world, where control is gone. I am no longer hands-on for Skip's care. Instead, I must stand by and watch as things are done for her. Sometimes I think a great job is being done; sometimes, not so much. And, other people can decide to send her off to the hospital at 2 in the morning when all she needs is some hydration (that's really what the problem was). How come I know that the special bed she's on can cause dehydration and the folks who are supposed to care for her in rehab don't so they don't take countermeasures such as daily hydration IVs?

Okay, so I'm not Superwoman. Never really was, of course, but I pulled off the impersonation for a very long time. Now that I'm human, I admit the frailty of humanness. But, can I learn to ask for the help we humans all need?

2am Call

2009-12-20T10:37:00.002-05:00

I hate it when the phone rings after about 9:30pm. To me, 9 is pretty much the latest time a purely social call can be placed to a friend. Late night calls in our house have all been about bad things. The ones I recall are all related to the impending deaths of both of Skip's parents and one of her brothers.

The phone rang at 2am last night. It was the rehab hospital letting me know Skip's blood pressure was very low and they were sending her to the emergency room. I asked if she was going back to the ER at the hospital she'd been transferred from. The answer was no as we were in the middle of a blizzard and they wanted to transfer her to the closest ER to cut down on distance travelled.

I lay in bed trying to decide what to do next. True, it was snowing and I very much hate to drive in snow. It looked like only about 3" had fallen by then, but it was projected we'd get snow all night and until about noon. If I managed to get to the hospital in one piece and stay with Skip, I'd be completely wiped out. I have a bunch of work that I'm behind on that I planned to tackle today ... how well could I accomplish that if I was sleep deprived and emotionally drained from a vigil in the ER?

I tried to sleep, but couldn't. Eventually, I got up and called the ER she went to. I spoke to her nurse. She'd only been there briefly, but her blood pressure was higher than at the rehab and she was awake and mentally clear. The nurse said they were at the very beginning of their assessment and suggested I call back in an hour. I went to bed and immediately fell asleep, waking up 3 hours later.

Before getting out of bed, I called back to the ER and spoke directly to Skip. She told me they were admitting her overnight. She was dehydrated. They were testing her for c diff (please, let this test continue to return negative results). Her butt was hurting as she'd been lying on a gurney without being turned for hours. They were trying to locate a good bed for her as an inpatient. She didn't want to be admitted, she wanted to go back to the rehab hospital where she felt they'd be able to care for her wound better.

I then spoke with her nurse to relay Skip's concerns and request to go back to rehab. (I guess there's nothing like a real hospital to make a rehab setting more palatable!) The nurse outlined some reasons why an acute care hospital made more sense for an overnight stay and also mentioned the concern with transferring her via ambulance with the roads in such bad shape. Since it was clear to me Skip was bound for a night in the hospital, I tried to enlist the nurse as an advocate on Skip's behalf (since I couldn't be there in person). We spoke about the need for a bed to help her wound and the troubles she'd had in her previous stay at that hospital 5 years ago.

Thirty minutes later, Skip called back to say she was on her way to her room. I spoke briefly with the nurse who indicated the steps they had taken and were taking to handle Skip's special needs. When the snow has stopped, I expect I'll get in a visit as the roads will be safer.

With this crisis passed, now I'm beginning to worry about finances for the first time. Medicare has a per-admission inpatient deductible of about $1,000. One admission wasn't a fun expense to look forward to, but manageable. Does each of these new hospital stays count as a separate admission? If so, we're at $3,000 and counting. I've got some research to do. (UPDATE as of 12:20pm: the inpatient deductible is charged once per "benefit period." A benefit period begins when admitted to a hospital or skilled nursing facility and ends when there's been 60 days not in a hospital. So, all 3 admissions to hospitals and rehab have occurred within this one benefit period. Sounds like just one inpatient admission deductible will be due. Phew.)

Space Age Bed

2009-12-18T07:40:00.000-05:00

Yesterday afternoon, I met Skip at the Wound Care Center for a visit with her surgeon (she was transferred via ambulance from rehab). The surgeon looked at the wound, did a little cleanup, and declared that it looked really good. She doesn't have to see him again for two weeks (New Years Eve day).

When I met her back at her room at the rehab hospital, a new bed had arrived. It's called a Clinitron Rite-Hite (more info here. I tried to find a picture that I could post, but I couldn't pull one from the brochure at the site my link will take you to.) The top half of the bed, where your back will rest, is fairly conventional looking. From the small of the back down, it's a whole new animal. A permieter of inflated air gives the bed shape. Inside that wall of air is a sack of sealed silicone beads that continuously move around, creating a support surface that's like liquid. The marketing stuff calls it "fluidized air."

There's no need to turn someone lying in a bed like this. The movement of the silicone beads handles everything so pressure is offloaded continuously. It was very cool to watch the bed at work, with Skip and the bed's surface moving a tiny bit all the time.

There might be one issue with this bed. Apparently, it's heated to about 82 degrees Fahrenheit, so it doesn't always work out for individuals with MS, who can really feel the effects of heat. Skip did not mention any feelings of discomfort from overheating during the 2 hours I was with her yesterday evening (imagine Cranky with fingers crossed).

This bed sounds like a wonder. The brochure I read about it states that outcomes are much better on this kind of bed than an air bed. For a particular wound size, the healing time in an air bed was 70 WEEKS. On the Clinitron, it was 15 WEEKS, and improvement of over four times.

Rental cost is $85 per day. This is not the bed that's been ordered for us as a rental for when Skip comes home. If she tolerates the warmth of it and it seems to be working out, I'm going to see if we can change to this bed for home. The Hill-Rom website shows a home version.

Hopeful Birthday

2009-12-17T08:26:00.000-05:00

Yesterday was Skip's 54th birthday. It was also her first full day in rehab. On Tuesday afternoon, she was transferred to an acute rehab hospital about 30 minutes from our home. Apparently, acute rehab hospitals are set up to handle patients with both significant medical issues and rehab needs. She has settled in well to a large, single room. The place is clean, the staff is good and the food is better than at the hospital.

So far so good, from my perspective. Yesterday was a very busy day. I took it as a vacation day, so spent most of the afternoon and the early evening with Skip. Hardly 15 minutes went by without someone else coming in. In particular, I met her attending physician, the physician assistant that will do the day to day medical stuff, her occupational therapist and the hospital's social worker.

The rehab folks are very much about getting people up and about, about helping them regain lost functionality and finding new tools for independence. I am delighted with this perspective and think it will be valuable for Skip since she's been losing her arm and hand strength. Maybe in addition to helping heal the wound and kill the infection, she'll come out of this even better than when she first developed the wound.

She'll definitely be in rehab for Christmas, so I'm planning to bring in dinner that day for her. It won't be the best place to eat Christmas dinner, but we'll be together, which is the most important thing.

I am Consumed

2009-12-15T12:58:00.001-05:00

I am so caught up in Skip's seizure, wound, surgery, hospitalization and imminent transfer to rehab that it's easy to forget the rest of the world is moving along. I see the Red Sox missed out on a couple of great free agent pitchers. The financial markets seem to be holding up well at year-end. Obama is following his predecessor in a misguided troop expansion in Afghanistan (at least, I assume it's misguided, I haven't paid enough attention to really know). Christmas tree lights are up all over and other folks are worried about completing their Christmas shopping, wrapping gifts and getting their family visits firmed up.

Someday I'll lift my head up to look around at the rest of the world, but right now, dealing with the overwhelming health issues (oh, and trying to get my paying job done) are about all, in fact more than, I can handle right now.

[end of whine, but still overwhelmed]

I'm Skip's Wife

2009-12-13T09:44:00.000-05:00

Quick update: Skip is truly now into the long, slow recovery phase. Truly, the crisis has passed. Phew! Yesterday, 6 different friends stopped by for a visit with Skip during the afternoon, which was very welcome. We've been getting a lot of love and care through emails, calls and this blog, but there's nothing like a hug with real arms and a chance to be surrounded by friends in the flesh to make you feel loved and supported.

In September, I wrote this piece "Do We Have to Get Divorced?" because I'd found out that the premium for state-sponsored health care was huge if my income was factored in but zero or close to it if only Skip's income was used. For disabled people with this coverage, 40 hours a week of home health aides is included, which made the coverage very attractive, though not so much at the married premium. Since we were doing okay at the time with the amount of aide support we had (the intrepid MW), I left things as they were and we remained married.

With Skip's stay in the hospital, I am so glad we did. I know we'd be treated with respect as a couple even if our status was "partners." However, it is wonderful knowing that I am legally afforded the status of next of kin in the healthcare setting. And, it gives me a thrill every time I introduce myself to yet another nurse, aide or doctor as Skip's "wife." I feel I'm doing my part to help the heterosexual world grow accustomed to knowing people who have now entered into a same-sex legal marriage here in Massachusetts.

As an aside, I had a cup of coffee and a chat in the hospital cafe with one couple who had stopped by to visit with Skip. They, too, are married. We got into a brief conversation about the terms we use to describe ourselves in relation to our spouse. They use "spouse" because to them, the term "wife" carries with it lots of negative connotations because of the historical (and current) subservient relationship many wives have to their husbands. I said I use "wife" most of the time because, in its purest sense, wife is the term given to a female person in a marriage. Calling myself a wife is also a way for me to "take back" some of the bad connotation and restore it to its purest meaning. This is similar to how I feel about words like "fat." For many large people, they shy away from the term fat because it's so loaded with bad meaning. For me, I describe myself as fat purely as a descriptive term, rather than always use some kind of euphemism like "large" or "full-figured." [end soapbox]

I'll be off soon for the first of two visits to see my Skip today. Looking forward so much to seeing her.

Success, Now What?

2009-12-12T09:27:00.000-05:00

The surgery was a success, according to the surgeon. He accomplished what he wanted, to clean out the "goop," his technical term, from the wound and then attach the wound vac. He also took cultures so they can re-evaluate the cooties (my technical term) that are infecting wound and bone to determine if any adjustment of antiobiotics is required.

From the surgeon's perspective, his need to have Skip in the hospital ends following his first change of the wound vac dressing on Monday afternoon. The neurologist has determined her seizure was most likely a one-time event because of the results from the CT scan and EEG, so he has indicated he won't be following her case any longer at this time. The infectious disease doc stopped by yesterday evening while I was visiting. He wanted to find out more about the allergies Skip has to two antibiotics (discovered during a bout of cellulitis almost 2 years ago) because she showed up at the hospital with MRSA as one of the cooties and vancomycin, a key choice in attacking MERSA, is a problem for her.

(Now where did she pick up MRSA? My only guess is that it was introduced by one of the nurses who came into the house. I know they all take care with the use of gloves and hand washing/disinfecting, but that's the logical conclusion as to its source.)

From an infection perspective, the treatment going forward will be a continuing course of IV antibiotics. The current protocol has her receiving them intravenously four times a day. I found out last week that Medicare does not pay for IV administration by a visiting nurse in the home. As a result, it's being recommended that Skip spend a short time in rehab following her hospital release (tentatively scheduled for Tuesday).

The prospect of rehab has Skip sorely depressed. She wants to come home. She misses me, she misses the pups, she misses her home routines. We miss her too. Personally, though, I think rehab for a short time is a good idea. I can learn to administer an IV but I'd like that to be my responsibility at the tail end of this process, not for the long haul. Also, I'd like to see her get a bit stronger so she can do more on her own with her hands before she's left to her devices at home. Finally, I am hopeful she'll get daily physical therapy at a rehab hospital to help get her on the road of building back up her arms and hands. We have to stop the downward spiral of weakness that she's been in lately (I think this is a result of the infection, not an MS symptom).

I gave her my little pep talk about a rehab stay yesterday evening. However, I know it was largely falling on deaf ears. She will be very unhappy about this prospect until it occurs and, perhaps, during the entire time. I am hopeful she can eventually look at this as a time where she can take advantage of the resources available in rehab rather than as a necessary evil to be tolerated until she can get home.

As a backdrop to all of this, is the unfortunate timing. Her birthday is Wednesday and Christmas, normally her favorite time of year, is in less than 2 weeks. It will be a bitter, bitter day for her if Christmas finds her in rehab.

I'm sad for my Skip.

Surgery Today

2009-12-11T07:12:00.001-05:00

As I write this, it's 7:05am ET and Skip is scheduled for surgery at 7:30. Her surgeon estimated it would last about an hour, then she'd need an hour or so in the recovery room. I'm estimating she'll head back up to her room mid-morning, and I plan to join her then.

I had figured it was a bad use of my limited time away from the dogs and work to be at the hospital during the surgery and initial recovery, when I couldn't be any use to Skip for support. However, I am doing a bit of second-guessing of myself. Despite that, I still think the plan is the best use of a key limited resource: me.

Her surgeon called me yesterday to let me know there is infection in the bone on the side where her wound is, as was reported to me by the internist. He said the other side isn't infected, though. Instead, what's there is deep tissue injury which, if not dealt with, would lead to another pressure sore. The air flow mattress then will have two purposes: help heal the existing wound and keep this incipient one from blossoming into another wound.

I'm thinking hopeful thoughts about this surgery. This is a very important step as it will clear away the necrotic tissue in the wound and create a good bed for healing. They'll attach the wound vac when the cleanup is done to supercharge that healing.

I worry about my Skip, though.

Bad to the Bone

2009-12-10T07:53:00.001-05:00

Yesterday morning, I spoke with the hospitalist (an internist) working on Skip's case. She said the MRI results indicated bone infection (osteomyelitis), and her take on it was that it was very significant. Infection was showing on both sides of her hip. She said I'd need to speak to Skip's surgeon about it in regards to treatment, but she thought the treatment would be protracted and significant, indicating that surgery would likely be used to help clear up the abcesses and dead bone tissue.

Oy! I must confess, this was the most worrisome news to date and prompted a fairly significant reaction in me. And, since it's really the surgeon's assessment and recommendation on course of action that matters in this situation, I felt wound up with the news without any way to put it into perspective as to how we'd get it fixed.

I called the surgeon's office and set up a call with him a few hours later. He had not reviewed the MRI results but said he wasn't surprised that bone infection was present after what he'd seen of Skip's wound on Monday in the ER. He said it had taken a definite turn for the worse. He painted a different picture of the treatment than the internist, indicating the infection would most likely be treated with antibiotics and this could be done at home. Of course, I took this with a grain of salt because he hasn't yet reviewed the MRI results.

I got to the hospital around 4. The surgeon came in shortly thereafter (still not having seen the MRI) and did a short debriding session. He is tentatively planning surgery for Friday. I am expecting he'll have additional insights to offer today following his review of the MRI.

In other news, Skip had a special IV line set up (PICC) that can be used for an extended period to handle her daily antibiotic regimen. She got a unit of red blood cells transfused while I was visiting and antibiotics (Zosyn) were next to be administered.

Skip isn't happy to be in the hospital, of course, but she seemed to be in pretty good spirits yesterday. She's still very weak, so I fed her dinner during my visit. I've brought in some books to read to her, and am keeping her up to date on postings here, especially comments, as she's really appreciating them. (I am, too.)

All Seized Up

2009-12-08T21:48:00.001-05:00

During the night on Sunday, Skip was mentally confused and kept me awake from 2-4 with continuous requests to adjust her position and remove the packing from her wound because it was irritating her. This was totally out of character; honestly, she hardly ever wakes me up during the night for anything (which is lucky because I typically don't react well to such wake-ups). I got up to begin work around 6 or so and waited until about 9:30 to go in to start her day with her morning pills so she could catch up on the sleep she missed.

I went in with her pills. When she awoke she stated, "Mary full of grace." What!?! This from a lapsed Catholic girl who has never been to a Mass of any sort in the 28 years I've known her except for funeral or wedding masses. I asked her what she was talking about and she looked up at me with her eyes opened as wide as they could, pupils roving wildly around (imagine an old movie sterotypical representation of a crazy person). Her crazy look and out of control pupils scared the bejesus out of me.

Then, her body started to spasm uncontrollably. At first, I thought it was her leg spasticity being a bit extreme because she hadn't yet had her morning pills. Then, I realized the spasming was consuming her entire body. Even the muscles beside her eyes were spasming. She began to drool. I had never seen such a thing happen to Skip or anyone else.

In a minute or two, the spasming stopped. There she lay, eyes partially open, breathing deeply, emitting a snorty, snoring sound, drooling continuing. I called out to her to try and rouse her. No response. I tried not to panic, but really, really horrible thoughts cruised swiftly through my brain.

This was way beyond something I could handle. I called 911 and described what was happening. Five or six EMTs arrived. They hooked her up with an oxygen mask, took her blood sugar, which was low but not alarmingly so, and assessed the situation. They transferred her to a stretcher and took her off to the emergency room.

While waiting for the EMTs, I called the office of her surgeon who was scheduled to debride her wound the next day and spoke with his office admin. He called me back while the EMTs were here, so he got the lowdown.

I showered, sent an email out to colleagues letting them know what happened and that I wouldn't be working and called the ER to let them know I was on the way in case Skip woke up and was freaked out that I wasn't there.

When I showed up in the ER, they brought me right into her room. She was settled in on a gurney, with an IV running. She said hi and smiled, seeming very unconcerned. Not at all the Skip I expected to find. She was just barely with it but was only marginally aware that she wasn't hitting on all cylinders.

A bunch of tests were performed, including a CT scan, chest X-ray and an EKG. Many vials of blood were drawn. This hospital uses MDs called "hospitalists," and the hospitalist handling the admissions for Monday stopped by to get more info from me on the seizure and to update us on what the test showed. Fortunately, nothing showed up of concern on the CT scan. The blood work showed electrolytes out of whack. She clearly had an infection. So, the plan was to admit her and get everything stabilized so the surgery could occur.

Skip's surgeon did stop by for a quick visit including some wound cleanup and the wound nurse came in twice, first to pack and bandage the wound and then help out the surgeon and then rebandage after his work. She also organized the special mattress for Skip's hospital room.

By mid-afternoon, I knew Skip was really coming back. How could I tell? Because she was becoming a fusspot! Her genial good spirits receded as her awareness returned. At times we joke about her being a bit of the "princess and the pea," because she can be very persnickety about her comfort. When a bit of the princess and the pea emerged, as she fussed about her situation, I knew my Skip was mentally on the mend.

Around 5pm, we got up to the hospital room. Over the next hour or so, the staff got Skip settled in and oriented.

I left around 6 and went home to relax and get the pups out of their pen. It was very different being home alone. The pups and I headed off to bed fairly early and I slept soundly without interruptions (yay!).

All in all, I'm impressed with the care Skip is getting. The surgeon, hospitalist and an infectious disease MD are all working in a coordinated way to bring Skip back to health. The nursing and support staff in the ER and the ward are very professional while still being warm and caring. It's very comforting knowing that she's in such competent hands.

I'm running out of steam. So, tomorrow, I'll provide more updates on what happened on Tuesday and what is likely to happen in the next few days.

Quick Update - Surgery on Hold

2009-12-08T10:22:00.000-05:00

Just a quick update as I have to head over to the hospital to visit Skip. Yesterday morning, she had a seizure and I called 911 so she could be rushed over to the ER of the hospital where the surgery is to occur. Doesn't look like anything wrong in her brain such as a tumor, just bad stuff accumulating to send her into the seizure. Stuff like cellulitis (infection) around the wound, electrolytes out of whack, low red blood count.

So, she's set up at the hospital with the special mattress to help her circulation for wound healing. She got IV antibiotics last night. Is getting a transfusion of one or two units today. Basically, getting her stable so they can proceed with the surgery to do a major debriding of her wound.

In the meantime, her surgeon will be visiting and doing minor debriding every day.

This evening, I will provide additional updates and give more info on the seizure itself ... a very harrowing experience. Think good thoughts about us!

"Sorry For Your Troubles"

2009-12-05T11:08:00.001-05:00

When Skip's father died, and we spent a lot of time at wakes and his funeral, I heard a lot of friends and family saying to Skip and her siblings, "sorry for your troubles," as part of their condolences. We picked up on that phrase and use it here at home as an acknowledgement of rough times.

Well, if there ever was a time to acknowledge the roughness, this is it. Skip's in a bad way. Her wound is getting worse and will require major changes in her life to get it to heal.

On Tuesday, Skip is going in for day surgery (late in the day) to have the wound cleaned up (debrided) in a more controlled environment than the clinic setting. The plastic surgeon should be able to get all the junk removed and set up the wound for healing. At that time, they'll reattach the wound vac.

She'll spend at least a few days in the hospital. Actual duration is still TBD, but I am hopeful that we can get the special bed that's been ordered delivered to our home ASAP so she can spend a short time in the hospital and then come right home to the bed. (I'll provide more details on the special mattress that promotes circulation when I get the official name of it and can look it up on the web.)

My experience with hospitals and their ability to handle the special needs of the handicapped is poor. Skip is staying at a different hospital than the one she's been in twice before. Here, I am trying my best to get her needs identified in advance in the hope that they'll be prepared.

The only other time Skip had day surgery, there was an expectation that I'd get her changed into a gown and set up on a gurney and NO ONE helped me! The surgeon's office contacted the patient advocate at the hospital where he's affiliated and I spoke with her yesterday. She is going to work with 1) surgical day care so they're prepared to provide me with assistance, 2) the in-hospital wound nurse so she can order a special mattress for Skip and 3) will prep the staff on the floor where Skip stays so they'll understand her special needs. She also reinforced that I should feel free to call her if any issues arise.

This is the lowest I've ever seen Skip. Her life has altered for the worse ... she's not out of bed for long each day. She is in constant pain. She's stressed out and that is causing her to be very weak, so often her arms and hands barely function. She anticipates that she'll be lying in bed for 6 months healing and this will have a permanently debilitating effect on her, so she'll slide downhill quickly as far as upper body strength and arm/hand functionality (I, too, worry about this). Yep, things are pretty grim in Skip's world view.

I was pretty damned cranky about things for a while, but just recently a switch clicked in my brain and I've emerged from the worst of that so I am now in a better place to provide emotional support to Skip. I hope I can keep the switch clicked. I've always been there for the physical care, but sometimes I'm just not available for the emotional care when I'm in my own dark and dismal place.

Think good thoughts about Skip and her wound on Tuesday. Wish her luck for successful surgery and her embarkation onto a healthy recovery. Oh, and wish me luck for the strength to be supportive and wonderful to Skip now in her time of greatest need.

Two Thanksgivings

2009-11-29T09:54:00.000-05:00

Thanksgiving is my favorite holiday. It has all the good feelings and visiting with family and friends that Christmas has, but doesn't have the craziness of shopping, wrapping and money spend that goes with Christmas.

Skip and I have hosted our fair share of Thanksgiving dinners, including a number with both her parents and mine in attendance. The days where we hosted are long gone, though, and we have benefited from the generosity of family and friends for many years.

This year, we went to Thanksgiving at the home of our friends D&D. They are famous for their dinners and parties for friends and family, and deservedly so. One of them used to be a chef and we first met them by having dinner at the restaurant they owned. There were 15 of us at dinner. Family for both D's and friends gathered at a table set with wonderful, traditional stuff ... turkey, gravy, stuffing, mashed potatoes, sweet potatoes, mashed butternut squash, warm rolls, cranberry sauce, roasted brussels sprouts (these were a revelation as I'd never had them roasted before).

We ate well, watched football, had a chance to visit with folks and really enjoyed ourselves. Skip was up and in her wheelchair for longer than she has been of late, and she tolerated it well.

The plan had been for me to cook a turkey and fixings on Friday so we'd have leftovers, since what is Thanksgiving without them? D&D had a ton of food left, including a second turkey that hadn't even been cut into for dinner, and loaded us down with a bit of everything. I reheated it all on Friday evening and we enjoyed it immensely. Our turkey went into the freezer for some weekend during the winter when roast turkey followed by turkey soup and turkey tetrazini will be quite welcome.

My parents saw my sister and her husband and four boys on Thanksgiving day, so they invited my brother, his wife and three kids and Skip and me for yesterday, Saturday, at their house on Cape Cod. My dad's aide would do all the cooking and cleanup so we could even be lazy to boot. With her wound, Skip wasn't up to the trip (four hours of jostling in the car over the round trip was especially a concern). I waited around at home until 3pm for the nurse to come and change Skip's packing and bandage, then got her up and in the chair and headed down to the Cape. Fortunately for me, dinner was scheduled for 6pm because my nephew had to work and wouldn't arrive until 5:30. I got to my parents' house about 10 minutes before he did.

We sat down to a lovely dinner of boneless rib roast, scalloped potatoes, broccoli with aioli sauce, creamed onions (one of my mother's specialties) and fruited breads my sister-in-law made. My brother's kids are all in their 20s and have turned into great young adults. I am not so comfortable with kids and never really knew what to say to them or my sister's kids when they were young. Now, they're of an age where I find it much easier to chat with them and, I'm sure, they're more comfortable talking with me. I didn't get much chance to chat with my parents on this visit, but I know they were very happy to see us all together, breaking bread and having lively conversations.

And, the entire group, with my sister's family added in, is getting back together the Saturday after Christmas at my parents' house. I'm very much hoping Skip will be up to that trip. And, if she comes, we'll bring the pups along, too. They'll get serious loving from all my nieces and nephews.

On Then Off

2009-11-26T13:23:00.001-05:00

The box containing the wound vacuum and supplies arrived on Tuesday morning. Tuesday afternoon, the wound nurse installed it. It worked fine, suctioning and burbling through the night. On a lift Wednesday morning, the vacuum seal was broken. Unfortunately, before I could reseal it with fresh adhesive, the black sponge inside the wound unraveled and fell out.

The wound nurse said she'd come over on Wednesday afternoon to insert a new sponge and get the vac going again. Unfortunately, when she came to look at it, her assessment was there was too much slough in the wound to use the vac. Apparently, you shouldn't use it if the wound's surface has too much slough and Skip's wound didn't pass the test.

So, she put in some Aquacell AG for overnight. Today, Thanksgiving, she came in the late morning (even though she isn't working today!) and changed the dressing. She was very pleased with the results of the Aquacell AG overnight and expects we'll keep using that until the next steps are worked out with Skip's MD.

At this point the nurse will communicate with the plastic surgeon we're working with at the Wound Care Center to see if Skip should go in for surgery to be debrided so the vac can start back up as soon as possible.

Skip's physical therapist is recommending a specialized hospital bed that promotes circulation and requires Skip to stay in it virtually all day. Not sure when that will happen, but we're talking about taking the queen-sized platform bed out of the bedroom and replacing it with the hospital bed and a twin for me. This way, we can continue to sleep together but Skip can benefit from the therapeutic features of the hospital bed.

We're hoping the bed option gels together much faster than the wheelchair did. The wheelchair took over one year from point of selection to delivery.

Oh, and, Happy Thanksgiving, my American friends!

On the Brink of Vacuuming

2009-11-23T22:08:00.000-05:00

I thought about the title of this post and thought things like "update on the wound" and "wound status" probably wouldn't be too enticing in the blogrolls of my fellow bloggers where I'm listed. Better to tease the potential reader with the title above.

Anyway, now that you're here... I'm back in the blog world with an update on Skip's wound.

We went on 4 successive Thursdays to the local wound clinic for debriding by a plastic surgeon. This is the process of removing slough and necrotic (aka dead) tissue from the wound to leave a nice, healthy wound bed, providing a good site for healing (FYI - do NOT go to Wikipedia to look up the definition of debriding unless you have a strong stomach. The photo accompanying the article is gruesome.). The second visit wasn't the most fruitful debridement because Skip's blood sugar was out of control (she has Type II diabetes) and they were very restrained as a result. They also sent us off to the Emergency Room after the appointment. Fortunately, Skip's blood sugar was returning back to normal in the ER so nothing further was required; we still have no idea why it was so high that day as the problem has not recurred, fortunately. The 3rd and 4th visits were very effective and the surgeon announced last Thursday that we could begin the vacuum wound treatments.

The device arrives tomorrow morning and the wound nurse and the nurse in charge of Skip's case are coming for the initial setup. From there on, nurses will come and change the sponge in the vacuum 3 times a week. We'll still need to visit the wound center every other week for a while for a check-in on progress and such. The projected time for healing is 4-6 months. Yikes!

Now that we're transitioning into the healing stage for the wound, the next thing to work on is Skip's environment to ensure such a horrible thing as this monster wound never occurs again. A Roho cushion for her wheelchair has been held up because the company that sourced her power chair are having issues getting Medicare to pony up the $24,000 for the chair and won't get the cushion until that's resolved. I'm not quite sure what the status is on the bed air mattress. We'll check in on that when the nurses come tomorrow. In the meantime, Skip is sleeping on her side (she's been sleeping on her back for years) and is spending afternoons when her aide isn't here lying down. She's changing her position through tilt and recline on her chair throughout the day.

I just checked in with Skip. The pain today is "so-so." Some days it spikes way up, some days it's moderate, but it never seems to go away. I'm looking forward to a pain-free day for Skip.

Blogging to Recommence Soon

2009-11-19T08:05:00.000-05:00

I've been in an ugly place and haven't felt much point in blogging of late. I progressed past hyper-cranky into dread. I woke up feeling dread, felt it all day long and thought dreadful things as I tried to grab some sleep at the end of the day.

Dread is lifting, some hope is returning. Talk to you soon.

Visit to the Wound Clinic

2009-10-31T16:43:00.000-04:00

With Skip's wound not responding well to the treatment prescribed by the wound nurse, we had to pick up things up a bit. We'd resisted going to see a wound doctor because we had no way of getting Skip up onto a table for an examination and treatment. Skip's wound nurse had worked at a different wound clinic at another local hospital and knew there was a setup there for Skip to get on a stretcher and be cared for. So, she arranged for an appointment there on Thursday.

The atmosphere right from when we walked in was very different from what I'd experienced at other clinics, which were always professional, but never warm. Right from the start, everyone was warm and friendly ... from the receptionist to the intake nurse to the wound nurses to the doctor himself, it was a great team. The intake nurse had an excellent means of transferring Skip from her chair to the treatment table using a sheet until Skip's knees and a bit of strength from the nurse and me.

The wound nurse gave us some disturbing news when she measured the wound. She let us know it was 3.8 cm deep. Yikes!

The doctor came in and debrided the wound. We have to go back next week for another round of debridement, with the application of an ointment that will continue the cleanout in between. Once the wound is prepped for healing, he told us they'd use a vacuum approach to promote healing. On Friday, when the visiting nurse came to change the bandage, she was pleased to hear about the vacuum approach since she'd seen great results with that with another client.

I was very concerned about the wound prior to the clinic visit. I'm still concerned but also optimistic about the prospects now that we've got the clinic folks engaged.

The Mother of All Cranky Reasons

2009-10-31T15:10:00.000-04:00

In my post on Tuesday night I asked, essentially, why I bother with it all. Why do all this work; why provide all this care? What's the point? These questions were prompted by an outburst I might characterize as the mother of all crankiness. It was caused by a not-so-delightful combination of Cranky Reasons #9 (this freakin' disease), #6 (this shouldn't be happening) and #5 (I get scared) plus an unnumbered reason: enough already. The situation was that Skip's hands were so weak she was finding it too hard to eat her dinner salad and asked if I'd feed her.

This request prompted a cascading series of images in my mind as I imagined helping her eat becoming a part of the daily mix of caregiving tasks. If you're a caregiver, you can become accustomed to a certain level of care that you're providing, but adding new items can be a scary prospect. I reacted very badly to this new possibility.

Right now, we have a pretty good routine in terms of serving dinner to Skip and the level of support she needs that allows me to eat and enjoy my meal at the same time. If I have to feed her, then the entire routine will change and I won't be able to eat at the same time and someone's dinner will be eaten cold (most likely mine).

But, most importantly, if I'm feeding Skip, then this is one less chunk of time I can call my own that is instead given over to caregiving. This is what I most regret about the need to take on any new tasks ... I lose that much more time in my day where I determine how that time is spent.

The Unanswerable Questions

2009-10-27T22:55:00.000-04:00

I'm having one of those kinds of evenings. Wondering what it's all about. Why are we here? What is all this work for and is it worth it?

I have no religious beliefs to fall back on; I basically come up empty at times like this. Just looking into a black hole when trying to fathom the reasons for it all.

October is Birthday Month ...

2009-10-26T21:09:00.000-04:00

... in my family. Today is my Dad's 84th, two weeks ago, my mother turned 81. My brother (who's been spending a lot of time here lately doing home projects) hit 57 early in the month. (My sister and I have July birthdays.)

The proximity of my parents' birthdays to one another led to a wonderful family tradition that went on for 10 or 15 years (traveling up for the get together is a bit too much for my dad now). Sometime each October, the whole family would congregate for dinner in a private room at a local historic inn. This included my parents, Skip and me, my sister, her husband and 4 boys and my brother, his wife and 3 kids. After dinner and coffee, every one in the family would talk about his or her year.

I loved the stories from my nieces and nephews. We'd hear about sports, school, boy scouts, travel. Year over year, it was interesting to see how they grew both in the nature of what they reported and their ways of reporting.

I liked the adults' stories, too. One year, my brother-in-law spoke very movingly of the death of his father earlier that year and how that experience added insight into his relationship with his sons. Even the occasional guest was expected to join in the storytelling. My mother has a very warm spot in her heart for one of Skip's brothers who spoke very movingly about our relationship and my care for Skip during our civil union ceremony in Vermont in 2001. Ever since, he was a perennial invitee to the party and always gave his updates when his turn came.

On Wednesday, I'm heading to the Cape to join my father in a meeting. Afterwards, we'll head back to their house to join my mom for a nice dinner. I'll love seeing them and enjoying their company, but this write-up is making me long for a full-out family gathering to hear the year's stories from all the generations.

The Front Walk is Done

2009-10-24T21:43:00.000-04:00

It's actually been done for about a week, but I haven't gotten around to posting photos. We're delighted with the results. We still have some other work in the front yard, including replacing the lights and modifying the gutters, but this is a huge improvement.

One thing I've realized over the last few weeks, with this work and the work my brother is doing, that home improvement projects I do aren't the only ones that spawn other work. I think it may be that almost ALL of them do! That's been a good thing for me to realize. These follow-on projects aren't due to my incompetence as a home improver, but they are actually quite typical for any home projects.

Anyway ... on with the pics. Before ....

And, ta-da, AFTER!

After the leaves and needles are done falling and then are all cleaned up, we'll put some mulch around the perimeter of the wall to cover the raw earth. (Yet another project spawned by this one. :-) )

Try a Little Tenderness

2009-10-24T10:52:00.001-04:00

Who knows why certain moods overtake us? I do know that my general tendencies towards good moods are in the morning, bad moods at night. Well, this morning, I was in a wonderful mood and that extended into strong feelings of tenderness towards my wife.

Skip's really been having a rough go of it lately, as her pressure wound has escalated over the last 1-2 weeks into a serious problem. It's got her freaked out, as I'm sure I've mentioned before (this almost daily posting does tend to create some repetition in my posts).

I got her up this morning and into the shower to start her day. I always help with part of the shower, especially because her arms aren't strong enough and her hands aren't dextrous enough to manage a good shampoo (for her inch-long hair). I was struck with such strong feelings of tenderness and a desire to take care of Skip while helping with her shower. MS is such a sucky, horrible disease. It has taken away so much from her and she needs so much as a result. I was glad I could be the one to help.

Bells are Ringing in My Ears

2009-10-22T08:07:00.000-04:00

I don't often talk about any maladies that effect me, but today I want to talk about my ears. They ring.

I know they've been ringing for over 30 years because I clearly remember speaking to a doctor about them when I was 21 or 22. In my late 20s, the ringing was accompanied by loss of hearing in my left ear such that if I was speaking on the phone with the handset to my right ear, I had little awareness of ambient noise in the room. And what I could hear in my left ear was blurry.

The partial deafness and working in a good job with medical benefits prompted my first significant exploration into my ear problems. I went to Mass Eye and Ear, a part of Mass General Hospital, and had all sorts of tests. These essentially determined there was no clearly definable reason for the deafness or the tinnitus.

The hearing loss in the left has come and gone over the years. I have learned to accomodate it by strategic seating in settings where I'm in a group, such as large, in-person meetings and restaurants with a group of friends.

In my mid-30s, vertigo joined in the fun, so I now had a trio of ear issues. This led to the identification of Meuniere's disease as a likely culprit of these issues. My father has Meuniere's, though he hasn't had any vertigo attacks in 15 years or more. (This is lucky for him since his mobility is now impaired by Parkinson's.)

The hearing loss is always there to some degree, the vertigo is a very infrequent visitor, but the tinnitus is always with me. I'm writing about it now because it's really spiked up over the last week or so. Over the years, the loudness and the tone have varied significantly, even varying by ear. With the recent increase in volume, I now have a pulsing, high-pitched ringing shriek localized slightly to the left of center in my head. This is also accompanied by distinct ringing sounds located directly in my ears. When the house is wonderfully quiet in the mornings, like right now, it's presence occupies a fair portion of my consciousness; later in the day, when the activity level and noise increases, competing with the tinnitus, it will fade into the background.

In addition to all of this in the present day, I look at my dad and worry about the future of my ears. He is 84 and has two hearing aids, having worn them for at least a decade. Despite this, he needs to be spoken to in a fairly loud voice and dialogue often needs repeating. I suspect this is in store for me. D'oh!

Stop the World!

2009-10-21T23:37:00.000-04:00

Warning: drivel ahead!

I had a brief period of overwhelmingness today. I had a good sense of what the day would bring and then a curve ball got thrown. Skip's aide, MW, had talked yesterday about not coming today because she was trying to get packed for moving this weekend. As a result, I thought the day consisted just of work, with only my brother coming to do some home maintenance. No nurses, no MW, no physical therapist. All in all, that seemed pretty quiet.

Late morning, MW called and said she'd like to work 1-5. Skip was thrilled. That would get her outside on the patio (it was a lovely, warm day here), a visit and a cigar smoke. I was not thrilled, though. Skip and I had planned that she'd spend time lying on her side in the early afternoon to take some pressure off her wound. That was out. We'd planned on only have one visitor today, my brother. That was out.

Suddenly, this change in plans had me completely overwhelmed. Not for any good reason, but just because it was a change. But, I didn't crank out. Instead, I gave myself a time-out. For about 15 minutes, I sat in the living room and wasted time on my home computer. I completely separated myself from the day's pressures. It did the trick as I was able to climb back into the day's responsibilities and routines and get through it all without descending into a bad mood. In fact, I ended up appreciating MW's presence as she took care of a lot of household activities (such as empty diswasher, fold laundry) that would have been part of my routine instead.

I have to watch out for tomorrow, though. We're having 4 new appliances delivered and partially installed (gas appliances being installed by a plumber on Friday), MW, the house cleaners, my brother and a full day of meetings. Oy! I'll have to be on my guard for crankiness! (Actually, I've already come up with ways to settle myself into a "cone of silence" so I can work away from all the chaos. Wish me luck!