Blogging to Recommence Soon

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

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

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

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 ...

... 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

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

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

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!

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!

Circle of Sh*t

I used to often ask Skip "what's wrong?" I'd know she was in a gloomy state, but wasn't sure of the root cause, so I'd ask. I thought this was a good way to start a dialogue to see if we could work together to battle the problem.

 Skip wouldn't want to talk about whatever the problem was, though. Nine times out of ten, the cause of the problem would be one of a small set of things, such as her increasing disability, her mobility issues, her prognosis. You know, all the kinds of things someone with a chronic debilitating disease would worry about.

 She just didn't want to talk about this stuff. But, I continued to ask. (I am just a pest, I guess.) Because she didn't want to talk about the MS stuff that was bringing her down, we ended up getting into small tiffs when all I was trying to do was help out. Eventually, we came up with a shorthand way for Skip to say what was bothering her to short-circuit this bad pattern, "circle of shit." If I'd ask what was bothering her, and she said it was circle of shit, I knew what the root cause of her bad mood was and I could be supportive without being invasive.

 It's amazing how just having this exspression we were able to defuse any issues created by my trying to poke at Skip's grumpiness/sadness. Often as not, we'd end up laughing about the circle of shit saying and Skip's mood would lighten.

 I realize we haven't used the "circle of shit" saying in quite some time. Over the years, Skip's overall attitude and outlook on life improved to the point that she doesn't get as gloomy as she once did. In fact, my mother frequently comments on how positive her attitude is.

Caregiver Aids #12: Drug List

Skip takes a lot of prescription drugs. There are so many, I started keeping a list. We bring the list with us whenever we go to a medical provider or the emergency room. It almost always generates a word of thanks from the person handling intake. And, it results in a complete and accurate list of all drugs for the provider who's thinking about prescribing something new.

Over the years, it's morphed a lot. I've now got it categorized by medical condition, describe the pill itself, indicate when it's taken and, when Skip developed some drug allergies a few years back, I added a list of drugs she's allergic to at the bottom. 

Here is a sample of the drug list with some MS drugs left in as examples:

Patient Name

Daily Drug List

As of: Month Day, Year

Drug,* dosage and pill description	Morning	Noon	Evening	Bedtime
For MS Symptoms
Baclofen, 10 mg, white tab, imprinted 10 a	4	4		4
Tizanidine, 4 mg, white flat oval tab, imprinted R180				1
For Condition X
For Other Issues
As needed:

* Where now available as a generic, the generic is used

DRUG ALLERGIES:

• List as needed
  
  

Shopping Therapy

Skip is having a rough day. The pressure sores -- their presence, their pain and discomfort -- have her a bit freaked out. So, we're going out for a bit of shopping therapy. And what will we buy? Why, appliances!

Our oven is about 25 years old. The pilot (or some part of it) died at the beginning of the summer. We've had this repaired before and it cost a good bit, as Skip recalls (I have a memory like a sieve for those kinds of facts). We kept vacillating between repairing it for the umpteenth time or just breaking down and buying a new one. After comparing the cost of repair vs the cost of a new one, we've finally decided that it's time to buy a new one. With the cold weather now here, we're ready for some roasted chicken so we must have an oven!

The clothes dryer is well over 20 years old. The last time we had it repaired, the repairman suggested we buy a new one when the next thing went wrong. The clothes washer is just over 20 years old. It's never been repaired as far as I can remember, but it's starting to have troubles with the spin cycle. I have read that front-load washers are more energy efficient and clean clothes cleaner; I'm having a bit of a yen for a front-loader.

I read this morning that the federal government has a program for household appliances similar to the cash for clunkers program for cars. If you replace your current appliances with items that are energy efficient, you can receive a rebate between $50 and $200 (or was it $300?) from the feds.

It sounds like a three-fer in the appliance department. I guess it's a sad story of my total domesticity that the prospect of buying a washer, dryer and oven all have me pretty excited. And, Skip loves, loves, loves to shop ... even for appliances. So, we'll all be happy. Well, except for the pups, who will be together in their crate while we're out.

Special Appreciation

Earlier today, I was getting Skip dressed. Part of that routine includes care for a pressure wound she's developed. Her wound nurse recommended a new approach in caring for it. We started today to use a Dakin solution, which requires packing the wound with gauze soaked in a diluted bleach solution. Yes, regular Clorox bleach is used to help clean the wound to create a better bed for healing.

Skip was nervous about the bleach. She worried it would hurt. The wound nurse had assured her that some folks notice stinging when first applied, but it's not a painful solution. Still, bleach was freaking her out.

Whenever I'm doing something for Skip's care that she can't see, I tell her each step as I'm about to take it so she knows what's coming. Today, I explained in even more detail than usual so she'd be right with me as we tried out the Dakin solution.

When the bleached gauze was in place and a gauze covering taped on, she told me that I take great care of her. At times like this, when we're trying something new that's got her a bit freaked out, she is comforted by how much she can trust me and knowing that she's in good hands.

That made me feel great.

Oh, and by the way, she's noticed a bit of stinging, but not a major problem. That's good, because it gets applied twice a day!

Still Cranky

I haven't written about it much of late, but I still get cranky. Especially at bedtime. At the end of the day, I just have no ability to let it "roll off my back" and I can get quite crabby very easily. In addition to the low tolerance level I have at bedtime, I don't seem to have much flexibility in general.

Yeah, it's not just at bedtime. It feels like the demands of life are too high and there's little ability to absorb anything else. Admittedly, my absorption capabilities are higher in the morning than at night, but that's a fairly fine distinction lately.

I'm taking a few days off at the end of the month. I'm hoping to unwind and, if possible, be irresponsible, if only for a few hours. That should take the edge off.

To Costume or Not to Costume?

Skip and I are going to a Halloween party. It's a costume party and it's requested that all partyers wear costumes. The last time we went to this couple's Halloween party, Skip wore a simple costume and I was bad, going in street clothes only.

It probably wouldn't surprise folks who read this blog to learn that I'm a curmudgeon who's not much on costumes. And, to a certain extent, not much on parties. I do find, though, that I am usually happy that I went to the party when all is said and done.

Sometimes I'm able to give up my curmudgeonliness and actually loosen up and have fun. I'm going to attempt that here. Skip is all for wearing a costume and has been regularly asking me to look through costume websites to get ideas for what to wear.

It's a struggle for me. I can be such a stick in the mud.

No Baseball in Beantown

I wrote a while back (April 13th), the following:

***************************************************************
Cranky Reason #8: the Red Sox
Cranky Reason #8: the Red Sox. I have to admit that it's not only caregiving stuff that can make me cranky. I was really looking forward to the Red Sox season starting up last week ... their poor start is making me frustrated and cranky.

De-crank Strategy: Just turn off the game if it's going badly. If they come back and win, I can read about it and enjoy the outcome secondhand. If they don't come back, I don't have to be frustrated by their inability to take advantage of opportunities. I have been employing this strategy frequently already this season.
 
*****************************************************************
 
I noted there's an even better de-crank strategy for dealing with occurrences such as this that are completely out of my control ... don't care! If you don't care about the outcome, then you won't get angry if the outcome is bad.
 
The Red Sox played well at the start of the season, way way back long ago. As the season progressed, they began to suck. Although they made the playoffs, it was pretty clear it was their play in the first half of the season that gave them the record to clinch a playoff berth. So, I was hopeful they'd do well, but wouldn't have been surprised if they did badly.
 
Well, play badly is exactly what they did in the first round of the playoffs. But, when they lost the third game in a row against the Angels and were swept out, I wasn't cranky. I had stopped being invested in the outcome. I was disappointed, but that was it. My expectations were very low and the Red Sox met them.
 
I guess I can learn from this ... in order to get cranky, I have to care.

More Maintenance ... On to the Front Walk

The front walk consists (or, actually, consisted) of cement blocks about 3' X 5'. It's 30' long. The blocks were poured by my father about 40 years ago, with help from a friend and my brother. Over the years, they've moved slightly, sunk a bit in a few places and the wood shims between then has rotted away in some places. The yard has been steadily encroaching on the edges of the cenent blocks. All in all, the thing looked crappy.

We decided to take the leap and have the walk rebuilt. We'd get to raise it up slightly to stop the water pooling, put a short wall along the edge to ensure no further encroachment of the yard and improve the look overall.

The first guy who came to give us an estimate is the brother of the woman who cuts Skip's hair. He is semi-retired, had lots of great photos of work he'd done and gave me an estimate for the work that made my hair stand up. We mulled that over for a while ... could this really be what the walk rebuilding would cost? So, then we called the guy who'd repointed the chimney last year, who'd built some walks for some friends, and he gave us a quote 25% lower than the first guy. Bingo! We were in business.

He came on Saturday, with a crew of two guys, and they made huge progress. Unfortunately, they ran out of bricks and, with the Columbus Day holiday, the store that sold them to the mason won't reopen until Tuesday. So, they did a little bit of work on Sunday, but are now just waiting for more materials to finish the job. We're anxiously awaiting their return so we can see the outcome!

On Saturday morning, the first thing they did was to break up the cement blocks. They did this by levering one up with a pry bar, then the other guy slammed down a sledghammer to break it. Wow, brute strength!

The work in progress is looking great so far!

Leaf Peeping

Skip, the two pups and I went to our favorite spot for fall foliage viewing today. It's a cemetery in a nearby town that is filled with maples, especially red maples. We decided to head over there today to gawk at the great red maples in all their glory.

The trip wasn't entirely successful. First, we went to a seasonal ice cream/clam shack restaurant that we like to take in here and there in the warm weather. At the tail end of the season, they are open only on weekends, so we thought they'd still be open. Unfortunately, the sign that greeted us said "closed for the season." We decided to postpone eating until after we went to the graveyard as we didn't have a clue what we wanted to eat as an alternative (I'd been thinking fondly of friend clams, clams with bellies, not the strips). At the cemetery, we found lots of color, but mostly yellows ... the big red maples hadn't turned yet.

Nonetheless, we enjoyed our drive through the cemetery. Skip likes to check out the gravestones, I was focused more on the foliage. The weather was mild and the sky was a clear, beautiful blue.

While we drove around, we decided to get Thai food and bring it home to eat. Unfortunately, the place we called was closed as we were between the lunch and dinner hours. Oy! Well ... we ended up with Chinese, which Skip loves.

Driving to Cape Cod

Today was one of my semi-monthly day trips to Cape Cod to visit with my parents and give them a hand with the bills and their checkbook (though in all honesty my Dad handles 95% of the bills).

I enjoy visiting with my parents and the opportunity to help out. But I think the drive down to the Cape is very restorative for me. I get time alone, time when I listen to music and think. Over the last few trips, I've also started giving friends a call to chit chat, trying to be better about keeping in touch with them.

Shortly after I left the house, I made my first call, giving a ring to Skip's cousin JH. She's a lesbian, married to her partner of more than 30 years. JH's wife has COPD, is on oxygen all day, and the cousin is a full-time caregiver (they're both retired). I've recently started calling to check in and try and give support, as I know full well how difficult and challenging that role can be. And, I enjoy her sense of humor and perspective on things. Then I called the home of two friends of ours that used to live about a mile from us, with whom we once socialized 2-3 times a month, but they moved away about 5 years ago. Our contacts have really dropped off, yet we love them and I want us to stay in touch. We had a nice chat. Couldn't reach the other person I called. (In case you're thinking I was holding a phone and driving one-handed all this time, I do wear a wireless headset and all the calls are hands free.)

That killed almost half of the drive. Then, I fired up the Dixie Chicks and listened to them the rest of the way. I don't usually listen to Country music, but I really like the music and voices of the Chicks.

I realized while I was driving along that I was happy. Very happy. Looking forward to seeing my parents. Enjoying the lovely fall weather, and the fall foliage (nowhere near peak, but still some beautiful spots of orange, yellow and red). Confident that Skip was in the capable hands of MW, and that she would have a good day herself. Not really any particular reason for the happiness, but it felt great, almost euphoric.

I always enjoy the drive down to visit, but this was definitely one of the best. I hope I can recapture that feeling soon.

Drivel Post #1

Some of the folks who read this blog may feel I've already penned drivel in a prior post or posts. I won't take offense if you think so. After all, what's interesting to me isn't always going to strike a chord with you. And, sometimes I can be accused of a bit of navel-gazing.

When I started the plan to post 30 out of 31 days in October, I knew I'd eventually come to a day when the well was a bit dry. Today is that day. I'm a bit wiped out from the week, Friday nights are always the low ebb of the week for me, and I'm needing a good night's sleep to recharge.

I'm relaxing on the couch in the living room. Sally is sleeping snuggled against my leg, Ruby is sleeping, lying on her back, just to Sally's side. Skip is in her wheelchair a bit to my left. She's got her feet elevated. Her rolling table (sort of like the rolling tables used for patients reclining in hospital beds) is in position for her to easily use her laptop. Everything she needs is within easy reach ... water bottles, tv remote, phone, snacks.

I'm waiting for the Red Sox playoff game to start. They're in California, playing the Angels, and the game doesn't start until 9:37. Right now, we're catching the end of the Yankees/Minnesota Twins game and I'm happy to see, in the top of the 9th, that Minnesota has a 3-1 lead. I'm hopeful the Red Sox win tonight as they lost last night and being down 2 games in a best of 5 series isn't a good situation. Considering the late start of the game and the fact that it'll conclude sometime after midnight, I suspect I'll not find out the result until tomorrow morning.

So, just checking in with a drivel-istic update. Hope you're all well!