Caregiver Aids #18: The Hydrant

Hi, all! I see it's been 9 months since my last post. All is well here in the land of Cranky and Skip, except for the inexorable robbing of functionality that comes along with progressive MS. Skip's hands are weakening, slowly but surely, and she is no longer able to hold up and drink from a 12-oz water bottle topped with a sports cap. She's been using that method of drinking water for years and years. I found on allegromedical.com a product called the hydrant:

As you can see, it's a large bottle you fill with water. At the end of the hose, there's a mouthpiece with a small cut in it. The cut opens when you bite down on the mouthpiece but otherwise stays closed. For Skip, we clip the hose to the front of her shirt. Then all she has to do is grab the hose and get it into her mouth to get a drink.

In my opinion, they're expensive for what they're made of -- about $25 on Allegro Medical and a bit more on Amazon -- but they're the only product of their type I've found. Replacement hoses are available for about $7 or $8, which is good, because we rinse the hose every day but don't want to wash it with soap as we'll never get it completely rinsed out.

Skip was resistant to it at first as she hates change and hated how it demonstrated growing weakness in her hands. Now she is totally comfortable with it and uses it both in bed, hanging from a rail, and in her chair, hanging from the back, similar to the second picture, above.

Change

Change is hard. At least, that's what Skip says. And she's right, it is hard. I need something to push me to make a change, otherwise I'll maintain the status quo.

Well, I've got my catalyst. I went to the orthopedist on Monday about my knee and found out a few things. The bony tumor is a non-event. Apparently, these bone growths can happen in your youth when you're growing. Unless the tumor starts to change, indicating it might be cancerous, it's nothing to worry about. But, I do have arthritis in my knee. The doc suggested physical therapy, especially to strengthen the muscles around my knee. He also said I could get a cortisone shot, but I will wait to see how exercising and such helps to reduce the discomfort. If the discomfort continues, I'll think about the shot.

So, it's time to get serious about losing weight to take some pressure off the knee and exercising for general health and strengthening. I joined Weight Watchers Monday evening and went back to the gym on Tuesday. I met with the trainer and got a set of exercises for upper body and core strengthening. She also showed me how to use the quadriceps machine, for leg strengthening.

Weight Watchers has changed their program quite a bit, which is good news for me. It means I can't just assume I know everything about it and be a bit complacent. Along with that, there are some great apps I am using on my smartphone for tracking my eating. It even has a tool for scanning barcodes and determining the Weight Watchers point values per serving. It's good to feel like I am taking control of my eating.

It's also good to be back to the gym. When I was going regularly January - May, I overdid it a bit -- at least for a late 50s, fat gal who's never been a gym-goer before. This time, I'm going to be careful to only go 3-4 times a week and not exercise for more than 30 minutes each time. Also, I'll be keeping close tabs on my knees and how they feel. If either of them hurts while on the stationary bike, I'll either cut back on the effort or stop altogether.

I'm looking forward to feeling stronger and having my clothes start to get looser ....

My Feelings About Caregiving

The way I feel about caregiving is similar to the way New Englanders talk about the weather. We say "if you don't like the weather, wait 5 minutes, it'll change." Sometimes I feel that caregiving is a crushing burden that has overtaken my life making me bitter and angry. Other times, I feel that caring for Skip is a wonderful expression of love and it's great knowing how good she feels when she's lovingly well-cared for. I can experience variations of these 2 perspectives in the space of one conversation.

Lately, I've been mostly on the positive end of the pendulum. I do have a cranky moment at least once a day, typically when I'm tired at the end of the day, but primarily I'm in good spirits and upbeat. This is a welcome change for both Skip and me, since I was feeling darkly, negative and angry for months. (Is darkly a word?)

Another thing I feel as a caregiver is guilt .... What I do feels like it is never enough. I get angry. I sit on the couch playing games on my computer while other people (PCAs) take care of Skip. I'm not disabled and Skip is profoundly so. Of course, guilt isn't a very productive feeling and it can tend to turn me to the dark side. I try to psych myself out of it with a rational, internal conversation. Unfortunately, though, that niggling feeling of guilt manages eventually to pop up again. From what I've read from other caregivers, I think feelings of guilt go with the territory.

I wonder what other people think of caregiving and how I'm doing ...

My Right Knee Hurts

I'm concerned about my right knee. An X-ray showed a "bony lump" on it, so my primary care physician recommended an MRI. Got the MRI on Saturday. (Just as an aside - the term "open MRI" is a misnomer. The machine is not open, it's still a donut where your body goes into the hole; it's just that the hole is bigger than a non-open MRI machine.)

On Tuesday, my doc's nurse called to say my doc recommended I see an orthopedist in the next few months to have the probably benign bony lump looked at. That afternoon, I called the UMass Medical center's orthopedics group and got an appointment for this Monday. Surprisingly quick, I thought.

Yesterday, I got in the mail a copy of the MRI write-up. Well, yeah, the bony lump is mentioned, but there's other stuff, too that is bumming me out. Like some issues with the posterior cruciate ligament and a condition called patellar chondromalacia, which is an inflammation behind the knee, with complete or near-complete cartilage loss.

I thought cartilage loss was only for football players and others who played sports for years on end. Apparently, what I've got can happen to older folks who overdo it. Well, also probably to older folks who have been quite fat for most of their lives.

Why did I join a gym? And, when I did, why did I sign up for a trainer who really pushed me? Guess I should have stuck to the treadmill and the stationary bike.

I've read that every pound lost reduces 4 pounds of pressure on your joints. I'm going back to Weight Watchers on Monday evening. There's a WW storefront about a mile from our condo. I'll go to live meetings to help with motivation and accountability.

I'll talk to the orthopedist about safe exercises for now. Guess it'll be upper body, stationary bike and some core strengthening only.

Whine over.

To Do Lists and Calendars

To do lists were a standard part of my day when I had a career. They were a good news/bad news kind of document. On the one hand, I would feel good when I got to cross things off and on the other, there were always a few tasks that I was putting off that would show up day after day, mocking me.

My calendar was virtual, part of Outlook, and 99% of it tracked the endless meetings that comprised the lion's share of my work day. Sometimes, I'd block out chunks of time in an attempt to get some items crossed off that to do list. Occasionally, there'd be a reminder for a personal thing like a dentist appointment. Other than that, mind-numbing meetings ad nauseum.

You know, I never thought deeply about what my day-to-day existence would be like when I retired, but I never thought I'd need a to do list or a regularly updated calendar. I suspect I fancied it would be more carefree and relaxed than the reality of retirement. I have a hardcopy calendar for the year and a pad entitled "Crap" that tracks my to do items. I'd be lost without these two things.

And, honestly, these tools help de-stress my life. If it's on the calendar, I don't have to remember it. Same for the to do list. I'm tracking doctor's appointments, meals out with my family and calls I need to make. Not client presentations and boring meetings. There's only one thing on my to do list right now that I'm procrastinating about. It's for my mother ... I really should get it done.

Fun Continues ...

Yesterday was a wonderful day, though I ended up overdoing eating and drinking, so was pretty much "done" for the day about 8pm.

While the aide was bathing and dressing Skip, I went down for a session of craps, with the agreement I'd be back up in about an hour to help with the wheelchair transfer. Well, it was one of those sessions when someone has an incredible roll and lots of money is won in a very short time. Yay! I was a little late getting back to the room since I had to stay until the hot roller was finished. No one minded too much when I got up to the room $1050 richer than when I'd left an hour earlier! That was fun, to say the least.

When Skip was ready, we headed downstairs and played a bit of slots and roulette for her. Shockingly, we won small amounts at each. Then we headed out for a short walk down the boardwalk. It was breezy, sunny and not too warm, so the walk was quite enjoyable. Great people watching on the boardwalk. Beyond the dunes, we could hear a live band playing reggae. I was inexplicably and ridiculously happy enjoying the wonderful moment.

We had hot dogs wrapped in pretzel dough along with a Ben and Jerry's milkshake for Skip and a smoothie for me. Skip was getting a bit hot, so we sauntered back to Caesar's (our hotel). Once inside, we played some more on a slot machine Skip really likes. Then, I took her up to the room to rest for a while before our 6pm dinner reservation. Second try for her renting The Guilt Trip with Barbra Streisand. Second time she fell asleep watching it. (To me, this suggests that the movie is as unentertaining as I thought.) I tried craps again while she rested. Not so successful this time, though.

We went off to dinner at The Atlantic Grill in Caesar's, which features a great view of the shore and ocean beyond. I had received an email from a casino host offering me some comps (complimentaries) at Caesar's for my birthday, so we chose a credit from him towards dinner at this restaurant. I had had a few drinks at the craps table and another at dinner. We both ate quite a bit, so by the end of dinner, the richness of the food had both of us feeling a bit uncomfortable. Instead of gambling for a while before the aide came to put Skip to bed at 9, we decided to buy some Tums and go up to the room and relax. I immediately feel asleep and woke up only long enough to help get Skip to bed then back under the covers I went. At 57, I guess I just can't go without enough sleep for a few nights then have a heavy meal and a few drinks. It just knocks me out.

Today is our last full day in AC. The weather is hotter than yesterday, so Skip doesn't want to spend much time outside.  She really wants a chance to shop!  Fortunately for her, there is a shopping mall attached to Caesar's called the Pier. It extends out over the ocean, so at least I'll get to look at the view while I wait impatiently for her to do her shopping. Not sure what we'll be doing for dinner, but I hope it's something a bit lighter tonight. Looks like coffee and water while I'm gambling ... no more black russians!

I'm sure we'll finish our last full day with the usual routine .... after Skip is in bed, I'll head downstairs to gamble at craps, blackjack and maybe poker, for quite a few hours. On our getaway day, we don't typically get in any gambling, because we'll want to get on the road in the early afternoon.

Just checked in with the intrepid MW, who is staying at our condo with the 3 pups. All are well. We always feel so comfortable that everything is good at home when she's there keeping our pups well cared for and safe.

They Say It's Your Birthday

I'm sitting here in our hotel room in Atlantic City. It's my birthday. A great day with my Skip is planned. Gonna gamble, eat and wander the boardwalk ... woo hoo!

We drove down to AC on Sunday afternoon. With some traffic and a short stop to gas up and such, it took about 6-1/2 hours door to door. We got underway at 1:15pm so it wasn't quite dark when we rolled into AC. Much easier and more pleasant driving in daylight over such a long distance.

When we checked into our room, we found that the bed sits on a base, presumably to keep it cleaner underneath, so the Hoyer lift wasn't going to work as designed. To transfer Skip from wheelchair to bed using the Hoyer, you put the long legs under the bed and this places Skip's body directly over the bed. Sunday night, I had to improvise and it was successful, but not easy and Skip admitted it was scary.

We had arranged with a local home health agency to send an aide for 2 hours each morning to bathe and dress Skip and help to get her up. She and I transferred Skip without using the Hoyer. Skip's wheelchair can rise up and down, tilt and recline, so it's easy to position it for a transfer. I didn't want to repeat the scary transfer from Sunday night, so I asked the aide if she could come last night (and the next 2) to help with the transfer and put Skip to bed. She agreed! Last night's bedtime was a breeze.

At home, ever since Skip had to start using a hospital bed with special mattress to help avoid pressure sores, we haven't slept in the same bed. Bah! Well, at least here, we can share a bed together for 4 nights. And, I must say this is a hugely comfortable bed. The last 2 nights I've slept through the night without waking, something I never do at home.

Well, I'm off to meet the aide at the elevator to bring her up to the room. Have a great day, everyone!

Yes, It Has Been a Long Time

Yep, over 8 months since my last post. I've been thinking about starting back up for a while, and am finally getting down to it today. I guess there are some things on my to do list that I really want to put off!

Some updates I'm sure you've all been waiting for with baited (or is that bated?) breath:

• We've now lived in Worcester for a year. We are really settled in here. We know the dog owners in the building and many of the other residents. The owners have taken over the condo association from the developer and I'm on the board. I'm only committed to the board for one year. It's been fun and interesting to help with the transition from the developer. 
• I joined a gym a block from here in January. Was going 3 or 4 times a week, working with a trainer, and really feeling good. Then, ping!, one day on the treadmill my knee felt a tweak. It never fully recovered, with the tweak recurring regularly. In fact, it got worse as time went on. I've got issues with every joint on my right leg now. Knee X-ray showed arthritis and an unidentified "bony lump." MRI coming up next. Oh, and the podiatrist after that for the pain in my arch on that leg. Can you say I was "overdoing it?"
• Skip was approved for personal care attendants (PCA's) through the state's Medicaid program, MassHealth. We have them for 29-1/2 hours per week. It's our responsibility to hire, train, fire and manage the PCA's and the state pays them based on the timesheets I fax in. We had pretty significant issues with 1 of the first aides we hired. She was unreliable and we were clearly at the bottom of her priority list. She's gone now (yay!). We had an aide that Skip loved to pieces quit because she got a job as a bookkeeper. Now we split the hours across 3 women who are all related -- a mother, daughter and stepdaughter -- which is working out beautifully. When one of them can't come for some reason, they find a replacement from one of the other aides and just let us know who's coming. This is such an advantage for me. Before when the unreliable aide would cancel, which occurred at least once a week, I was responsible for finding a replacement. Sometimes the other PCA was available and sometimes not. When not, I was the fill-in, which really pissed me off. 
• I am still cranky at times. In fact, for a while it was pretty ugly. I tried going to a therapist to deal with it, but I ended up not liking her style at all and after the third session, I stopped going to see her. Not sure what I'll do next. My spirits have been better of late, though I can still find my inner dark side. I think I'll reevaluate using outside help after I'm done with doctors and such concerning my right leg's many issues. 
• Skip is getting weaker, but her hands still function a bit. She needs help with eating most meals, especially dinner, when she's at her weakest. She's been a bit blue lately, but then wouldn't you be when almost nothing in your body works anymore? Really, she's a tiger, and has weathered the storms of MS far better than I think I would have in her shoes. 
• Skip has had no recurrences of pressure sores since her flap surgery to remove scar tissue in January 2011. Yay!
• We tried out a bit of traveling in April. First trip since early 2008. We drove down to Atlantic City for a bit of gambling, eating and shopping. We brought along the unreliable aide, so she could help with Skip's care and take her around shopping and help her play slot machines. Turned out to be a big mistake. Her younger son, almost 13, stayed with a sister back in Worcester and acted up pretty much from the moment we left. It got so bad, she was going to take a bus home one day early. She was miserable and distracted, casting a pall over the trip. So, we decided to leave a day early and drive her back. Did I say how happy I am that she's gone?
• We've decided to try another trip. Leaving for Atlantic City on Sunday. Four nights of fun await us there! We're not taking anyone else. It'll be just us chickens, with one exception. I've found a home health aide agency that will send us someone to bathe and dress Skip each day. I'll still take care of putting Skip to bed and I'll have to spend some time at the slot machines with her. But, we'll have some time just to ourselves, which will be great. Oh, and I'll get to escape into some degenerate gambling!
• We have a third dog. My sister's Shih Tzu, Dakini, has joined the household. My sister has had many changes in her life due to mold in her house and is dealing with chronic health issues triggered from the mold. She and her husband are now living in an apartment and in the process of building a new house. We love Dakini and are happy to have her here with us. All 3 of the dogs are sitting here with me on the couch right now.

Well, it's time to take the pups out for their noontime constitutional. Hope everyone is doing great! I'll send out some updates from Atlantic City.

"Just Us Chickens"

"Just us Chickens" .... that's what Skip and I call a day when no one is coming to the house. No aids, no nurses, no other people invading our space. Honestly, the people who do come are helping both of us immensely. Everything they do for me or Skip is something I don't have to do. And, Skip gets a change of company, someone to visit and chat with other than me while having her wants and needs met.

I wouldn't want to go more than one day in a row without assistance, but for that one, it's a real pleasure. Nine out of 10 Mondays are "just us chickens" days. Almost always, it's a peaceful and loving day, where we're both in excellent moods and spend our time together quite companionably. For some reason, even with the extra work, I rarely get angry on Mondays.

Skip is in the process of gaining approval for a state-funded Personal Care Attendant (PCA) program. This will give her a certain number of hours each week to allocate to her care and we get to hire and schedule the folks who do the work. We're still planning on leaving Mondays just as they are -- with just the two of us together at home.

Pics of the Place

Found my camera and took some pics of our condo the other day. I've omitted the 2 bedrooms. One is still filled with junk in boxes that I am slowly but surely selling off. The other had unmade beds in it.

This is a view of our front door. Our chalkboard is a wonderful device. I add appts there,  have a spot to record random items we need to buy so I don't forget them when making a list, and our punch list of things to do around the house. For Thanksgiving, it was a big help tracking menu items and task lists.

When you come down the hall from the front door, this is the view to the left or our LR/DR/kitchen. You can see our 2 dachshunds relaxing along with my sister's Shih Tzu Dakini who is visiting us. She probably spends about half her time with us and half with my sister. She's much better behaved than our dogs, because my sister actually trained her, though she is prone to bouts of anxiety, especially when there's heavy weather outside.

Take a right past the chalkboard and you enter the large hallway leading to our bedroom. To the left is a little alcove that we've set up with bookshelves on one side and an immense Ikea wardrobe on the other.

The aforementioned wardrobe. This is where we store Skip's chair when she's in bed.

Turning back down the hallway, you can see our main room.

The view of the main room standing at the other end. 

Fun, But a Lot of Work

The title, in a nutshell, describes Thanksgiving day (and the day after, when the cleanup was completed).

I was happy to provide a place for my whole family to celebrate the holiday together. We had 3 generations present and only one person from the youngest generation was missing (one of the older twins of my sister - who has 2 sets of twins - is enjoying a semester at sea, so couldn't join us). Everything I cooked was pretty straightforward to prepare, so the challenges of the day were primarily about timing - which task to do when.

It certainly is different having a party here in our condo than in our old house. For one thing, we were all in the same room rather than split up with some in the kitchen, some in the living room. Here, it's all one big room, so I was never by myself in the kitchen prepping or cleaning up. Also, we lived in our house for 23 years, so I knew where everything was, had routines established for parties and had lots of storage so we had tons of serving dishes and such. I gave away or sold a lot of things when we moved, so I wasn't quite sure what serving pieces we had. Fortunately, the huge platter, big enough for a 24 lb turkey, was still around. And, I found enough pieces we'd kept to put out hors d'oeuvres and serve the myriad of dishes I prepared. And now, we've made it through the first big shindig so it'll be that much easier the next time.

Thanksgiving

We're hosting Thanksgiving at our condo. By this, I mean, we'll be joined by my immediate family that day. There'll be 14 of us. It will be a good chance to show off our new home, especially to my mom, who hasn't seen it yet. I do actually enjoy hosting parties, and we haven't had a party in our home for years. I plan to enjoy myself a lot. It's always energizing to host a party.

I had a vision of a party that would include an easy clean-up. You know, paper plates and plastic silverware. Only because, honestly, our regular dishes have place settings for 12 and our flatware the same, so there wouldn't be enough for 14 folks.

Well, when I was driving my mother down to Connecticut on Friday to see her 92-year old sister, she took the long drive as an opportunity to quiz me concerning dishes, flatware, tablecloths, tables, napkins, etc. that we'd use for the meal. Too funny! When I made noises about paper plates and plastic silverware, it was quite clear that wouldn't do! She reminded me that she'd given me a set of sterling silver flatware when she moved out of her house, so we could combine them with our stainless. And, I have other one-off dinner plates packed away somewhere that we can use.

So, now I realize we've signed on for a fancy shindig. And suddenly it occurred to me that I don't know where many of the rarely used serving pieces and such are. Where did they get put away in the new kitchen? Did I actually give away all our platters before we moved or do I still have one somewhere to hold that 24 pound turkey I'm cooking? And, shades of my youth when my mother had me polish silver before any big party, tomorrow MW and I will be doing a bit of polishing ourselves, assuming I can find the serving pieces. 

Regardless of what pieces we mix and match to make up the place settings, I know we'll all have a lot of fun on Thursday. I'm really looking forward to it, and especially to showing off our new place. 

Caregiver Aids #17: Combination Door Lock

So you're a caregiver. So you have people coming to your home to help your loved one. Sometimes you're not there when they arrive and your loved one can't answer the door. Do you leave your door unlocked for all to enter, whether wanted or not? Do you hide a key somewhere, like under the doormat?

This handy little deadbolt with a combination lock can be the answer to all your troubles.

You can assign up to 19 4-digit codes to unlock the door. This way, each person that comes to the house can have his/her own code. When that person is no longer a part of the "caregiving team" you can delete the code. 

In our case, during those rare times when we're both out of the house, we can lock the doorknob and that will stop access by those who have a combination to open the deadbolt. 

There are lots of other relatively inexpensive home access options, including locks that can be wirelessly controlled. I didn't entertain using those for Skip because she has so much trouble with her hands, operating a remote entry system wouldn't have worked for her. This gives us what we need without Skip's hands having to be part of the solution.

Hunkered Down in The Woo

Yep, we're hunkered down in Worcester, affectionately known as "The Woo" to many. We've been buffeted with much rain and wind today as we sit on the outer edge of Hurricane Sandy's reach. Fortunately, we haven't lost power nor seen much impact from Sandy. 

Many of you will recall that last year, just about this time, we had an October Nor'easter that dropped a lot of snow in these parts. We lost power for more than 3 days and ended up spending 2 nights in a hotel and 2 nights at my mother's home on Cape Cod. 

Although widespread power outages were expected, I was cautiously optimistic we'd avoid last year's fate. First off, no snow was forecast here. It was the heavy, wet snow on trees still full of leaves that brought down so many power lines last year. Second, the utility companies must have figured out it cost more to go around repairing lines after storms like last year's than policing the limbs and trees overhanging their wires, so much pruning has occurred since last year, reducing the likelihood of power outages from limbs and trees falling on lines. Lastly, we live on a street with no power lines or telephone poles, so no falling trees would impact this neighborhood, power-wise.

"Expect the unexpected and unexpected never happens," said Norton Juster in The Phantom Tollbooth. Following his maxim, I spent most of yesterday preparing for a possible outage, even one severe enough to force us out of the house and into a hotel. Retrieved Skip's manual wheelchair from storage and cleaned it off. Charged up the power chair, the hoyer lift we'd need if we decamped and every other chargeable thing in the place. Gassed up the car, got cash, etc. etc. 

At first, I was mostly preparing for us to leave with an outage, as we had last year. But as time wore on, I realized we'd probably be able to stay at home if we lost power. The key difference between this year and last is: cold. Our house got down to about 60 degrees within hours of the outage, and then kept dropping, far too cold to comfortably stay there. Here, it's been in the 50s all day and now the temp is climbing with tomorrow projected to hit 70. I only heard the heat come on a time or two today it's been so mild. 

Happily, all the preparations were unnecessary as we've not lost power and the worst of the storm has passed. It rained all day. We experienced winds gusting up to 55mph. Now the winds are about 20mph with gusts up to the high 30s. We could still lose power ... MW just sent a text about 20 minutes ago saying that they'd just lost theirs ... but it becomes less likely with each passing minute. 

I'd say the biggest effect of the day has been caused by the low pressure. Apparently, the pressure is phenomenally low and it set some kind of record. The low pressure has given me a hellacious headache and caused all sorts of problems with my inner ears. I've been feeling a bit of vertigo and queasiness, so I took Zovran and Meclizine, my one-two punch of drugs to minimize the effects of my Meniere's disease. (Speaking of which, 2 weeks ago, I had a whopper Meniere's attack and had Skip call 911 to have an ambulance take me to the ER. I couldn't stand a 10-hour attack of vertigo and vomiting with the ground heaving like I was on a ship in a choppy sea. The EMT gave me Zovran and, voila, the nausea stopped! I'd never had Zovran before, but you better believe I got a prescription for it the day after my ER visit.)

So, the stress of pre-storm worry and today's waiting out the storm has taken its toll and I'm feeling pooped. Skip's already in bed. I just have to finish the dishes and take the dogs out then I, too, shall head to bed. When I wake up tomorrow, I hope for continued electricity and a return to normal air pressure. 

Hope you are all safe and snuggled in your homes tonight!

Where Do I Begin?

Greetings! Yes, it's been a long time since posting here. Almost 3 months. Lots of stuff to catch up on ...

• The new digs: we love our new place. We're 90%+ settled in. I still have clutter around because I'm always prepping stuff to sell, either on eBay or in one of my spots at multi-dealer shops. But, other than stuff to sell that's still boxed up, all the boxes are emptied. Paintings are up. Routines are established. It's all good. 
• Condo living: I love having neighbors in the building. I've gotten to know a number of dog owners as we often encounter each other when out with our pups. I'm a bit saddened by the coming cold weather as it'll have us all spending the minimum time outside with our dogs rather than hanging around in the outside warmth and giving the dogs more running time while we jibber jabber with one another. Sunday night, we had dinner in the unit of the woman who lives next door. It gave us a chance to get to know her better, eat her great food, visit with some other guests and just have an excellent time for ourselves. 
• City living: there is a downside to the city -- the noise. As the summer heat waned and the evenings grew cooler, I started opening one of the windows in the bedroom at night. The loud trucks and other street noise disturbed Skip's sleep (not mine, I'm a log-like sleeper), so we've stopped leaving it open at night. But, there are far more upsides. Everything is so close! Within a mile of our home, there are over 40 restaurants! Trader Joe's, CVS, Starbucks, the dry cleaners and jillions of other stores are all a hop skip and jump from here. There are cultural things to take advantage of in the city as well -- museums, theaters and such. We haven't taken any of them in yet, but I know we will eventually.
• The pups: Ruby adapted quickly to the new home. After all, she's pretty much of a couch potato and only wants to go outside to "do her business." Then, it's right back in for the closest couch or other soft spot for relaxing. She got used to being carried up/down the few stairs out to the dog spot very quickly. Addy, on the other, being more high-strung, found the change a bit distressing at first. In the beginning, I kept her on a leash most of the time outside because I didn't trust her to stay in the yard. She did not want to pee while on a leash and once went more than 24 hours without peeing. Searching online, I discovered this can happen with some dogs when there's a change or other stressor in their lives. She eventually built new routines, and now she's acclimated to the new way of life. One nice things is she's met a handful of dogs with whom she can play, so that's very good for her.
• Crankiness: I admit it, I still get cranky. Nighttime is an especially difficult time for me, and when putting Skip to bed, it is easy for me to find something trivial to trigger a crankiness attack. We often go out on Fridays for dinner with my family, who now live very close by, or on Sundays for little excursions out into the city, so those evenings were the most problematic. Because when Skip is fully dressed for going out, it requires the most effort to put her to bed. Through one of Skip's aides, we found a woman, JL, who used to work as an aide and isn't working while she goes to nursing school, who now comes on Friday and Saturday nights and handles putting Skip to bed. It takes her about 45 minutes ... 45 minutes that used to be my responsibility. We've been doing this now for about a month. Skip didn't like it at first; she's always most comfortable with me helping. But now she and JL get along famously and she enjoys having her come for the visit. I still get cranky, but not on Friday and Sunday nights!
• Work: I tried doing some sales work for a company owned by an old boss, whom I worked with successfully for 11 years. I have now found that pure sales work is not my cup of tea. I did a lot of sales work as a consultant -- getting new business was a key part of the job -- but it was only a portion of the work, not the whole magilla. The door is open if I want to go back and give it another try. For now, I'm going to put my focus, such as it is, into buying and selling antiques and collectables. Rather than buying abandoned storage units to get inventory, I'll concentrate on auctions, estate sales and garage sales. This way, I can ensure I buy only what I want rather than have to deal with the randomness and volume of a storage unit. This is something I enjoy very much, so that's half the battle, isn't it? It'll be a lot easier to maintain motivation when I like what I'm doing.
• Gary: I met Gary, the Crafty Southpaw, and Josie through their respective blogs. We met in person at Foxwoods to play poker a few times and also went to a Red Sox game together in the spring. On October 2nd, Gary had a stroke! He's so young, far too young to have such a thing befall him. Josie doesn't drive and lives more than an hour from Gary's rehab hospital. I offered to give her a ride down to see him, giving me a chance to visit and do a good deed at the same time. We set last Wednesday as the date. JL came over to stay with Skip and I headed into Boston to pick up Josie. We slogged through the rush hour traffic and eventually got to Gary's about 5:30. What a brat! He pretended to be "strokey boy," slurring his speech, showing little affect and basically trying to freak me out. I admit I was surprised at his demeanor as I'd thought he was in better shape. Fortunately, he could only fake it for a minute or two, then he reverted to his Gary-ness and we joked and laughed for 2 or 3 hours. I got to meet Gary's wife, and, like Gary, she is smart and funny. It seems she also has a strong personality, which one needs when living with someone with as big a personality as Gary's. The best news of all about Gary is that he's steadily improving, regaining lost functionality and is strongly motivated to work hard to get the rest of it back. 

Well, that's about it for now. Two of Skip's brothers and one sister-in-law are coming over to see our new place at the end of next week. So, I'll have to spruce up the place and get better control of my stuff sale that's scattered around. That'll be a good time to take pics and, if I get my act together, I'll post some of them to record our new home's beauteousness.

Caregiver Aids #16: DayLite Sling



When I was perusing the Surehands site (I believe it's called Handimove) in advance of purchasing our newest lift system, I noticed they had a new kind of sling which they call the DayLite Sling. It's specifically designed for people who spend a lot of time sitting on their sling, which admittedly happens to Skip. Her regular sling that she uses day in and day out cannot be removed once she's seated in her chair. I've always suspected sitting on the mesh sling reduces the effectiveness of the uber-fancy Roho cushion she has. Roho cushions are filled with little air bladders that give more pressure relief than your average wheelchair cushion.
I was intrigued by the DayLite sling and the salesguy who came to check out our new place brought one with him for me to look at. The key differences between this sling and conventional slings are:

• It uses parachute fabric which is light and smooth. Also wicks away sweat from the skin. Typical slings are made with a none-too-soft mesh or a sueded fabric.
• The sling has extremely flat seams so there's less possibility that a sore could develop where a seam meets the skin.
• It's made in a split leg design so it can be easily removed from under the patient if desired.
• The sling features batting in the legs so there's less likelihood of bunching when placed under the patient's thighs.

Let me just say I was taken aback by the cost of this item -- $450! However, if it delivered on its promise, I figured it would be much better for Skip to use it day in and day out.
Amazingly, it delivers! It is the best sling I've ever used by far. By a mile. I've always hated using split leg slings. Skip has only used them in the past when she was going out and wanted to be sling-free in her chair. Putting the sling back under her before transferring from wheelchair to bed was somewhat of an ordeal and often resulted in less than smooth transfers. In fact, once the transfer went so wrong, I had to call the fire department to come over and help me get Skip from the half-in, half-out position she once got caught in with a split leg transfer gone wrong. With the DayLite Sling, the legs easily slide under Skip for correct placement due to the slippery fabric. The sling legs do not bunch and provide good support under her thighs.
I still can't believe how much it cost but I rationalize the expense by reminding myself how much better this design is for Skip and how long it's expected to last. I expect we'll still be using this particular sling when we see 2022.

Surehands Installation

My very first Caregiver Aids post was about the Surehands lift we had installed in our old home. It served us very well and proved a safe and convenient transfer method for the last 4 or 5 years. When we moved to our new home, I knew we'd want to get a new one installed as quickly as possible.

I set up a time for the salesperson from the Surehands distributor/installer to come to the condo even before we were fully moved in. He took measurements, reviewed options, discussed equipment we had that could be reused and/or traded in. Within a couple days, he sent us quotes for 3 different installation options. In one case, we could use our old motor and track and pay only for installation. In the other 2 options, we'd upgrade to the new motor. We decided to get a new motor since the one we were using we'd purchased used and was getting a bit old.

As it turned out, the ceiling in our bedroom is almost 12' high. A bit lower and they'd have installed the Surehands track directly onto the ceiling. At that height, though, they needed to install sturdy bars, like rebar, that hang down about 2' and then suspend the track from these bars.

We set up a 10am appointment for last Wednesday. The installers showed up right on schedule and got to work. It took the installer quite a while to find joists in the ceiling. His last ditch effort was to cut a hole in the ceiling to find them. If he hadn't been able to find them, we'd have had to go to Plan B - with a wall-installed motor or a bridge going up the walls and across the ceiling to hold the motor and track. Neither had appeal (certainly, the bridge is more expensive) and would have delayed the installation by quite a bit. Fortunately, he found what he needed after cutting the hole and they were finally underway.

Well, the whole thing took a long time -- 9 hours! They occasionally grumbled to the effect ... "they told us it was an easy job -- only 2 or 3 hours," but managed to soldier on and get the whole thing completely installed for us.

You can see in the ceiling where the hole was replaced and mudded, along with filling the many test holes drilled before the hole was cut. In reality, they hardly show and I don't see any point in repainting them.

If you look at the photo from our last home, Skip used a body support for lifting when it was first installed. She switched to a sling a few years ago. The spreader bar that hangs from the motor has 4 spots to hold the 4 straps for lifting the sling.

Here's a photo of a sling in action from the Surehands site. Skip does not smile like this when being transferred!

Soon after the installers left, we gave the lift its first run. Worked like a charm! All around, the system is working beautifully. I would prefer a wireless remote for operating the motor, but that would have added over $1000 to the system and I just couldn't rationalize the cost.

Happily, this was the only modification we needed to make to the condo due to Skip's disability.

Post Move Pics

We've been in our new home since 7/3. Lots of progress in the unpacking, but still far to go ...

Looking at the main room as you first see it when you enter from the front hall

On Wednesday, we got all the stereo components hooked up so we can now fill the shelves in the entertainment center. The glass front cabinet is new. We bought it at a teak place that's going out of business.

My office has become a box dumping ground. The office chair arm was a casualty of the move. Can't use a rolling chair, though, at my desk. The floor is sloped so the chair rolls away from the desk when you sit down!

This room was once the main entrance to the school. The gray wall covers the double doors that were once there. It's home to paintings for now. We're getting an IKEA wardrobe for the right-hand wall. I picked up that teak wall unit off of Craigs list just before we moved.

The Hoyer lift we used for transferring Skip until we had the lift installed on Wednesday (yay!).

Long, skinny storage room. We're going to put 2 more courses of shelves above these for things we hardly ever use.



Skip's spot in the living room. She can back her chair in. It's a great spot, at the intersection of the two a/c vents blowing air into the room from about 10' up. The dogs can get up on the bed on the table to the right. There's a ramp going up to it from behind.

There's Unpacking to Do!

The main room (LR/DR/Kitchen combo) from our new condo looked at it from 2 different perspectives. You can't tell much about it except we've got lots of windows and lots of boxes.

The move went very smoothly. It was beastly hot, but we had no rain, which is key for a successful move.

Our new washer and dryer is coming in the morning; cable guy arrives in the afternoon. Also, the Surehands representative is coming in the afternoon to assess the possibility of installing the lift in our bedroom ceiling. We should be able to use the equipment we have here in the bedroom today, which will save us mucho dinero, versus having to buy a new motor and track.

I'm hoping to get a fair amount of unpacking done tomorrow afternoon. I need to clear some space in the main room for Skip's wheelchair so she can get around.

And what the hell are we going to call the main room?

It's Really Here

In the morning, my brother, BW and 2 other strong guys are arriving at 9. Bro and BW are coming in a 24' UHaul truck. They're going to load up almost everything in the house, except for things we need to live here for 2 more days. After we load up, it's off to Worcester for the unloading and initial setup.

All the boxes going tomorrow are staged in the living room upstairs (shown here) and the playroom downstairs

This house has an incredible amount of storage. These built-in pine shelves are in the playroom. The paneling in the room was milled from trees we cut down to clear the lot for the house.

We better not forget the few wine bottles in the cellar. We bought those bottle on a trip to Northern California with my parents 10 years ago. We don't drink much!

Skip and I will sleep in our new home on Tuesday night, just in time to see the Worcester fireworks. Apparently, we'll be able to see them from our condo. We're using Monday to do more prep both in Worcester and here so the place is a bit more settled when Skip and the pups roll into town.

Let the moving begin!