Thursday, April 30, 2009

Calming Force (CF)

I write a lot about the cranky side of caregiving, but there's a bigger, loving side to it that deserves mention here and there. After all, if I didn't love Skip and she didn't love me, why would we be in this caregiving/caregivee situation?

One of the loving things I can do for Skip is help to calm her nerves. She does tend to get nervous about things and looks to me to help be her Calming Force. In fact, it happens frequently enough, that we have a shorthand term, "CF." Often, when we're going to be heading out Skip gets nervous, worrying about the bad things that might happen. MS is such a terrible disease. All the things it screws up in your body just help to sap your confidence and feelings of security when you leave the safe confines of your home.

How do I calm her down? Basically, I'm certain we can deal with whatever happens, and can assure her of this with confidence. It might suck if whatever's she's worried about happens, but if it does, we'll just deal with it, and we have.

It makes me feel great when I know that I can care for not just her physical needs, but her mental needs, too. After I've helped her calm down about whatever's got her nerved up, and she calls me her "CF," I'm happy.

It helps to make up for some of that crankiness she has to put up with.

Note: just read this post to Skip and it gets her seal of approval!

Wednesday, April 29, 2009

Is it Friday Yet?

By all rights, from my brain's perspective, it should be Friday today. I've already had a more than full week, with plenty of crankiness to boot, and the brain is ready for the weekend.

I think it's due to two things: crappy sleep and my brain is "full."

It's been difficult this week to sleep well once into bed for the night. Falling asleep on the couch for an hour or two before going to bed has worked just fine. But, once in bed, I haven't been sleeping easily or staying asleep for long. I think this is due to my shoulders making me uncomfortable and sleeping a bit on the couch before bedtime. So, we're looking at buying a more comfortable mattress and I'm thinking about making an MD appointment to have the shoulders looked at again (this is a big step for me). I'm going to try and not go to sleep until we go to bed so I am more tired when my head actually hits the pillow.

On the brain being "full" ... I have had just about enough for my brain to handle this week so I don't have much capacity to handle anything new. New stuff, then, isn't absorbed easily, which is what helps to prompt cranky reactions. This can be as simple as a schedule change for one of our aides. Or, as major as trying to cram one more thing into an already jam-packed morning with tight deadlines looming. Just looking for a chance to "chill" so I can feel less at capacity. I suspect a weekend of mindless stuff - knocking off items on the to do list - will help me regain some capacity and get me feeling more organized, to boot.

On a slightly different subject, it's been a lovely, cool day here. With the work day almost over, I'll be heading out with the pups to give the 3 of us a short walk before dinner. Can't wait!

Sunday, April 26, 2009

Caregiver Aids #4: Honda Element XWav (Parts 3 and 4)

Part 3 - Living with the XWav

We concluded the purchase of the X-Wav shortly after Memorial Day and it arrived at our home on the back of a flatbed truck in August. I didn't have too do much with it except register it and attach the Q-straints (tie downs) to the anchors in the floor. First time in, we adjusted the tie downs to the right lengths for Skip's chair. And we were in business!

Since Skip doesn't drive and wouldn't need to ever raise or lower the ramp on her own, we ordered the half cut (lowered floor) on the passenger side with a manual ramp. This resulted in the modifications costing $17,000 rather than $23,000. (Trust me, those are not typos.) In other words, it meant the mods cost less than the base car rather than more!

Both her manual and power wheelchairs are rear-wheel drive models. She backs up the ramp to enter the X-Wav and pulls forward to exit. The ramp angle is not terribly steep so the forward exit isn't a problem. For front wheel or center drive wheelchairs, I assume entrances and exists would be the opposite - pull in and back off. When parking in the city, the ground clearance is sufficient to park on the street and lower the ramp onto the curb. The ground clearance is much better than in the modified van we used in New Mexico. I'd rate it comparable to a passenger car.

Three and a half years after buying it, I still get a rush when we park at a handicapped space and I walk around to the passenger side, open the door and lower the ramp. I mean, how cool is it to have this hidden ramp that just pops down for wheelchair access?

We did have some issues with the X-Wav that resulted in it going back to Battle Creek for remediation. There was insufficient protection to the body where it was cut to put in the ramp, resulting in spray from the front tire wearing away the paint and causing body rust the first winter we owned it. And, the ramp was not staying extended its entire length when lowered but only to the point of the hinge, allowing the trim under the ramp to get damaged. Finally, the paint on the lowered floor that is below the body trim was peeling off. This all occurred within 6 months of purchase and caused great consternation for me. I had purchased a vehicle I anticipated would give us 10+ years of service and it was showing significant problems with the modification in 1/20th of that time.

I had spoken with someone at Freedom Motors a number of times about the issues as they started to emerge. Their response was that the modification was still under warranty so I should take it to a local body shop and have it repaired and they'd reimburse me for the work. I didn't view this as just a garden variety body shop repair, such as a fender bender, so I wanted some guidance as to a body shop I could work with where they'd understand the special requirements of a handicapped vehicle. They could not suggest any vendor nor provide guidance as to the best way to pick one.

I figured why not go to a local Honda dealer with a body shop and have them do the work? Once they saw the modification, they refused to quote on the work. I wrestled with this problem a bit longer and finally, in frustration, called Freedom Motors and asked to speak to the president (it's a small company). I was connected to the head of sales. I described my problems. He heard me out. I sent photos of the problems. He got back to me with a great offer: they'd pay to have the XWav shipped back, make the corrections and then ship it back to me. This exceeded my expectations!

This was back in the early days of the X-Wav and I suspect they'd discovered some issues with the original design that didn't come to light until folks like us were using it day to day. I have to believe it was far preferable for them to bring it back in the shop and retrofit our Element with the corrections they'd made to the exterior paint, body protections and ramp strength. Fortunately for us, we have some dear and generous friends with an extra car that they loaned us while the X-Wav was out for repairs. It was back to the old style of transfers for Skip for a few months, but well worth it while the problems were being addressed.

I do see some rust around the ramp hinge and some other spots in the modifcation that have emerged since the Freedom Motors retrofit. I know we'll have to have this corrected. I took it to a local Maaco for a quote and had a strong negative reaction to the guy who gave me the quote. I have a body shop recommendation from a friend and will eventually have them give me an estimate for the work.

Part 4 - Pros and Cons


  1. Overwhelmingly, the mobility the X-Wav affords Skip is the biggest upside of all. This outweighs just about any con I can list
  2. The safety of transfers in and out of the vehicle
  3. The cost savings over a brand-new modified mini-van
  4. The expected reliability of a Honda
  5. The interior space of the Element - it's a huge box inside, so can carry a lot of stuff in addition to us
  6. Front-wheel drive
  7. It has XM Radio and the car stereo can play music from your iPod


  1. The unexpected cost of maintaining the modification, such as having the new rust corrected
  2. The cost of replacing the customized exhaust system, which was needed recently when I trashed it after running over a very large piece of ice on the road (I didn't see it until I was upon it as I was in traffic.)
  3. Inconvenience of the modification with non-handicapped passengers. Not a big issue for us, but if you wanted to use the X-Wav regularly with more than one able-bodied passenger, you'd find the design a pain. The original equipment passenger seat can be placed into the modification space, taking about 5 minutes to do so. The passenger cannot open or close the passenger door though, as the ramp is in the way. To exit or enter, sufficient space to lower the ramp is required. In 3-1/2 years of use, I have only inserted the passenger seat once, so this isn't an issue for us, but might be for someone else. I don't believe this would exist as an issue in a modified minivan.
  4. The way the Element is tossed about in the wind on the highway, since it's a big box
  5. Lack of a center console. Presumably, this had to be removed to provide adequate space for the modification. If you look at the 4th photo below, there's an off-white blob below the driver's seat. This is a trash bag that is hanging from the gear shift. And, no console means no cup holders or additional storage room.

Pro or Con - depending upon your perspective

  1. 4-cylinder engine. To me, this is a plus because it gives better gas mileage than a 6-cylinder. I find the acceleration fine but Skip's aide, MW, who drives a big, 8-cylinder behemoth, finds it pokey.
  2. The Element comes in 4WD but the X-Wav modification is only available in the 2WD version. Not an issue for me. I don't drive much in snow and the little I do is okay with just the front wheel drive. Those in warmer climes probably wouldn't need it at all.


Our little Element ("The Toaster") is not perfect. But, I love it and would recommend you look into it as an option if you're thinking about a modified vehicle. It's been almost 4 years since we purchased ours and, based on what I saw with our issues, I suspect Freedom Motors has made ongoing improvements as they've learned from experience. I'd hate to think how much more housebound Skip would be if we still employed the problematic transfer board solution. The X-Wav gives us a safe solution in a car that, to me, has a high "cool" factor.

If you've made it this far, thanks for reading!

Caregiver Aids #4: Honda Element XWav (Photos)

Saturday, April 25, 2009

Caregiver Aids #4: Honda Element XWav (Parts 1 and 2)

Part 1 - the Revelation

In May 2005, we took a trip to Santa Fe and Taos NM with another couple (the folks that were in the story from Cranky Reasons #10). Since we were going to be doing a lot of driving, I arranged for a handicapped accessible minivan rental to use throughout the trip.

Despite the fact that Skip had been wheelchair-bound for a number of years, we'd never purchased a modified vehicle that could accommodate her wheelchair without transferring from the wheelchair into the car. In the year or so before this trip, she was no longer able to stand and pivot for transferring, so we'd taken to using a long transfer board to get her from her chair into the front seat of our Toyota Camry station wagon. Her power chair was foldable. In order to get it into the back of the wagon, I'd remove both 25-lb batteries, fold the chair and heave its 86-lb body in, along with the batteries and seat cushion. It's lucky I'm strong!

I figured if we didn't have a wheelchair accessible van in New Mexico, Skip would be far more constrained to get out and about. It was such a hassle to get the wheelchair in and out of the car, it would really limit the likelihood of her getting out for sightseeing and shopping whenever the mood struck us.

When we landed in Albuquerque, the Wheelchair Getaways van was there with someone to show us how to anchor the wheelchair, adjust the tie-downs and make sure we were all set. We received warnings about the van's low ground clearance, which was quite warranted as we scraped bottom whenever we went over a speed bump.

This van was an absolute revelation! Never had it been so easy to get Skip in and out of a vehicle. And, without the occasional transfers gone bad at home. The front passenger seat had been removed, so Skip was right up front for the best possible sightseeing view. Tie downs were relatively simple and straightforward.

Part 2 - the Search
Almost from the first moment in the van, I knew we'd be looking for a handicapped-accessible vehicle when we got home.

I really had little clue what our options were. We'd experienced the side-entry ramp van in NM. We'd used three varieties of wheelchair van cabs in Las Vegas - full-size van with lift, minivan with rear entry ramp and minivan with side entry ramp. I started prowling the internet to see what was available.

A lift van looked to be the cheapest option but was not a good choice for a number of reasons: the high roof and full sized van would not fit in our garage, the unlowered floor placed the wheelchair passenger's head above the vehicle's windows making visibility very poor, the vehicle was just too large for my tastes and the lift process was very slow and tedious compared to the speed and ease of a ramp. Minivans with rear-entry ramps seemed that the modification took over the entire back of the van and the wheelchair rider was exiled to the back like a second-class citizen. I wanted Skip sitting beside me when we were out on the road. Side ramp vans like the one we'd used on the NM trip seemed the most attractive. The vehicle would fit in the garage. Since we had a two car garage with only one car, the ramp could come right out into the middle of the garage for easy access no matter what the weather.

We found a handicapped van dealer about 45 minutes from home. One Saturday, we drove over to see what they had. Sticker shock cannot begin to describe my reaction! A new Toyota Sienna modified van was $45,000! A used one with 55,000 miles was still about $35k. We were told that Toyota would finance modified vans with a 10-year car loan to make the monthly payment more affordable. I just couldn't envision a big car payment for 10 years.

So, I spent some more time prowling around the internet looking at new and used Chrysler Town and Country modified vans. It seems that most accessible vans are Chryslers. I really didn't want to buy a Chrysler. But, the prices seemed less stratospheric.

Around this time, I found a classified ad at the back of the NMSS magazine showing an accessible Honda Element. This seemed far more attractive an option than a minivan. Smaller than a minivan with Honda reliability. I went out to the website of Freedom Motors ( to check out the Element and liked what I saw. So, I got in touch with them.

Soon thereafter, I heard from their salesman assigned to the northeast. Freedom Motors is based in Battle Creek MI and apparently they had salespeople travel around with sample vehicles to demonstrate them to potential buyers. During our initial phone call, he described the options available and their costs. You could get a half-cut, with the floor only lowered on one side, a full-cut with it fully lowered side to side, the ramp on either side and a power or manual ramp. We were interested. We set up an appointment for his next trip to New England. He pulled the Element into the garage. He showed us some of the features, we got Skip into it with her chair and took it out for a spin. Wow! We were sold. We got the ball rolling to buy one right then and there.

At the time, the process for purchasing an XWav was to buy the Honda Element from Battle Creek Honda and the modification from Freedom Motors. Looking at their website today, it appears they typically sell the entire vehicle now. We had to wait about 12 weeks from point of purchase to delivery as they didn't begin the modifications until we bought the Element.

To come - Part 3 - Life with the XWav and Part 4 - Pros and Cons

Friday, April 24, 2009

Cranky Reason #10: Don't Tell Me What to Do!

Cranky Reason #10: being told what to do. Oh yeah, I do not like being told what to do. I came of age in the '70s, so that might have something to do with it. I learned very young to question authority, and I've been doing it ever since. And, I've noticed that my mother chafes at being told what to do. The apple didn't fall far from the tree on that score. This isn't just a problem when Skip tells me what to do, it's an issue in all parts of my life. I'd hate to be the boss of me!

A reminisence from 15 years ago ... Before Skip had to retire due to her MS, she was a chef, and a very good one. We have some 4 x 6 recipe cards documenting her signature dishes. One time, we were having over for the first time a lesbian couple we'd met just recently at church. By this time, Skip was no longer able to stand at a hot stove and cook. We decided I'd make one of these signature recipes, a chicken dish, as the main course. True, she'd probably cooked that dish a hundred times and it was my first try, but I heartily resented her sitting at the kitchen table trying to pass on her knowledge of the dish's preparation. I took it as "telling me what to do." Fortunately, we patched things up before the couple showed up and the dish came out great. That dinner was the beginning of a great friendship!

De-Crank Strategy: Really, what's the harm in someone telling me what to do? Does this compromise my personhood and integrity if I follow their instructions? You might suspect from my reaction that these will be the consequences. Take a breath, Crank, and choose a different reaction; it won't kill you. If that fails, why not try and turn it into a collaboration so you end up feeling like you're a partner in the endeavor rather than just someone being delegated to?

Thursday, April 23, 2009

Yep, I Still Get Cranky

Yesterday was a classic example of how things build up for me, resulting in a cranky outburst.

I had planned to get up around 6:30 or 7 but rose much earlier, at 4:30, because my aching shoulders kept me from finding a pain-free position. I puttered around on the computer for a few hours, tried to sleep again without success and just got back up for good.

Logged in on the work PC, checked my calendar to get a feel for the day and started going through emails. Pretty typical start to the day. Had a couple of things percolating, but knew they'd be manageable within the day. Not to be the case, though, as an issue emerged from left field that needed my involvement to help resolve. Suddenly, the orderly day became anything but.

The morning with Skip was proceeding in its normal way, so I was able to balance that with work demands. We have good routines for this, which is a huge help. Since I am in conference calls much of the day, we work through my availability based on my role in the call. If I'm driving the call or need to look at my computer screen during the call, then I can't really help her at that time. If I'm just a participant, then I am able to help. Thankfully, we haven't progressed to video conferencing, otherwise my flexibility would be seriously cramped! If only the other folks on the call knew what I was doing sometimes. Only one time in the last 2 years have I been unmuted when I thought I was muted, which prompted some funny questions from my colleagues on the call.

By late morning, the demands of work, including the issue making my day more stressful ... combined with Skip's needs ... the imminent arrival of an aide requiring that Skip be dressed and ready for her leg massage ... and the need to follow along with a presentation during a call tethering me to my PC ... crashed my balance of work and life demands, sending me skittering off to Cranky-land.

Soon, though, things were recovering a bit. The "tethering" call had concluded and I was onto a new one which I wasn't running and no need to sit at my PC to follow along on a presentation, allowing me to be anywhere in the house. We were progressing well getting Skip dressed and up, but running out of time relative to when the aide would arrive. I was still in my PJ's. I do prefer to be in a semblance of "day" attire before aides or nurses arrive and that was looking like it was going to be a challenge to complete before she came through the door. Then, Ruby (older of our 2 dogs) decided to start throwing up for some reason. How was I going to 1) feed Skip, 2) clean up puke, 3) contribute on the conference call and 4) brush my teeth and hair, dress and be ready for the aide's arrival SIMULTANEOUSLY? It just wasn't going to happen. Cranky-land, here I come again.

So, I did something I hadn't done before, I asked Skip to cancel the aide. This woman comes twice a week for less than an hour, paid for by Medicare because Skip is under a nurse's care for a wound that needs monitoring. She is not the aide who comes about 3 times a week that we pay for (who had called in sick earlier in the morning). Skip called, made an excuse, and cancelled her. Suddenly, with the removal of that pressure, I was able to get it all in perspective. With one less "ball" to juggle, I was able to handle those that were in the air. Got Skip fed, cleaned up the puke, continued on with my call. I did eventually get dressed and cleaned up, too.

Oops, I see that it's almost 9am and my first conference call of the day is about to commence. Fortunately, after I give some background in the first 10 minutes, I'll be untethered from my laptop and able to help Skip, so we'll be into our usual routines.

Have a great, un-Cranky day, everyone!

Tuesday, April 21, 2009

The Pups We're Crazy About

At play and at rest.

Civil Union Anniversary

Today is the 8th anniversary of our civil union in Vermont in 2001, one of 3 anniversaries we celebrate.

I never invested much thought in getting married once I realized I was gay, but the passage of Civil Unions in Vermont gave me hope. Soon after they were legalized, I started asking Skip to "civil union" me and, amazingly, she eventually said yes!

So began the search for a suitable spot for the event. Back in the day when Skip was ambulatory, we used to spend a fair number of weekends at a lovely inn in Vermont, and wanted to find a similar spot for our union; of course, now it would need to have a handicapped-accessible room for us.

I'm not quite sure how we found the place, but after much searching on the Internet and calling around, we found an inn with about 14 rooms, one accessible, that was near Brattleboro, VT and 3 hours from our home. In November 2000, we spent a night there to ensure the room would really meet Skip's needs and to check out the place overall, to make sure we could host our civil union there.

For the civil union, we took over the place for the entire weekend. We were joined by my parents, siblings and some of their kids, 2 of Skip's 4 brothers (her parents are dead) and some of their kids and grandkids, our closest friends and our minister from home and her husband. Maybe 25 folks all told.

The weather was beautiful all weekend. Unseasonably warm and comfortable for Vermont in April. Sunny and lovely as well. I had anticipated a "mud season" mixed bag of weather, but we got a beauty.

When I first contemplated getting civilly unioned, I'm not quite sure why I wanted to do it. One rationale was a desire to have as much legal connectedness with Skip as possible; I worried someday we might have some kind of hospital visitation/decision-making issues and looked for any kind of legal legitimacy I could find. Granted, our legal status in VT ended the moment we crossed the state line.

Maybe I was looking for a public declaration of our love. And that is what we most definitely got.

It was an absolute outpouring of love and support that we got from family and friends. The weekend, and especially the civil union ceremony, were so affirming for us. My father read "The Road Less Traveled" during the ceremony, getting quite choked up. Skip's brother, a Deacon in the Catholic church, spoke movingly of the love he had for us and the appreciation Skip's family has for me and all I do for her. (He is permanently cemented in my mother's affections as a result.)

The ceremony and the weekend went off without a hitch. I felt like one of the luckiest people on earth. It was a highlight of my life.

In May, I'll write a post about our wedding in 2004 ... 3 days after it became legal.

Monday, April 20, 2009

Cranky Reason #9: This Freakin' Disease!

Cranky Reason #9: MS! So how did I miss this one, plain as the nose on my face? I'd guess I didn't think of it before because MS isn't the thing that triggers crankiness, but instead makes my reactions to other events turn to crankiness more easily.
It takes a while for crankiness to build enough for me to verbalize it. In my mind, when I think of the impact that MS has on my mood, my anger/resentment/
bitterness about MS has already got the crank reservoir half-full. So, I get cranky more quickly than I did pre-MS (back in the dawn of time). The image here is intended to depict my view of this ... the crank reservoir that would be empty without MS is already halfway to cranky without any of the Cranky Reasons I've already discussed coming into play. This means I'm faster to anger. My cranky reaction is also more exaggerated than in the past ... though I can't think of an analogy to help explain that.
De-Crank Strategy: If I can remember it's the #&*%$ disease that's the problem here, that might slow down the crankiness. Hard to get cranky with Skip if we're in this situation because of MS. It may help from time to time to acknowledge how terrible the impact of this disease has been on our lives. I think it's just horrific that this disease has robbed so much from us and is also able to help drive a wedge between us due to its emotional effects on me (and Skip, too). Damned disease!

Sunday, April 19, 2009

A Visit to See My Parents

Just about every other Saturday, I visit my parents. They live on Cape Cod, a two-hour drive from our house. I've been in this routine for a year, since shortly after my father got in a car accident that landed him in the hospital and rehab for four months. (The accident wasn't too bad, but the pneumonia and C-diff he caught in the hospital were a completely different story.) My visits started as a chance to see my dad, help my mom with the bills and balancing the check book, followed by dinner with my mom.

Now, my dad is back to handling all the finances, but I help out with the checkbook balancing (sort of ironic, since I haven't balanced ours ever since online banking became available), tax prep and as a sounding board on other financial stuff. Mostly, though, the trip is a chance to visit with them.

Despite the fact that the trip kills most of a precious weekend day, I really enjoy it. I like having the chance to help them out, even modestly, since they have done so much and been so supportive of me over the years (well, we had a pretty rocky relationship in my teens and the first half of my 20s, but really great since then). But there are other positive outcomes to this that have nothing to do with my parents.

For me, it gives me time alone, which I rarely have. And a bit of a break from caregiving. Driving down, I usually play my iPod (you can play it through the car stereo in our Honda Element). Skip's taste in music doesn't overlap with mine all that much, so I can listen to anything I want, at high volume, and completely get lost in it. I know it's said that smells are the best trigger of memories, but for me there's nothing like an old song to bring them back. Two hours of music in the car is like a trip down memory lane ... both happy and melancholy. The music also tends to trigger introspection, something I'm not normally prone to, so it's a good opportunity to actually think some things through.

For Skip, she spends most of the day with her aide, MW. If the weather is nice, like yesterday, they'll sit out on the patio and smoke cigars (Skip got into cigars during our last Las Vegas trip.) Then, they'll have dinner of something I'd prefer not to eat. Yesterday, it was Italian sausage and peppers on the grill. I know Skip feels safest when she's with me, but MW is a good stand-in. MW takes great care of Skip, and spoils her a bit in the bargain (well, we all spoil Skip; her personality is such that it's very easy to spoil her!).

I leave home in the early afternoon and return about 10pm. The dogs greet me at the door, Sally is especially delighted to see me, hopping and dancing on her back legs. Everyone is settled in the living room ... apparently toggling between Red Sox and Bruins games. The kitchen is all cleaned up, the dishwasher has been run and dishes put away. Oh, and the laundry in the dryer has been folded and the sheets changed! Apparently, I've been a bit spoiled too!

Friday, April 17, 2009

Caregiver Aids #3: UPS (not the shipper)

Back in the time when I worked at the office rather than at home, Skip spent ~10 hours a day at home alone. At some point, her MS progressed enough that she spent most of her day in a power recliner that could lift her up to aide her transfer off. On the end table beside her recliner were a lot of things she used every day, including a cordless phone.

On the infrequent occasions when the power would go out, she was pretty stuck in the recliner. It did include a couple of 9-volt batteries for one lift up when there was no electricity, but at times she found the batteries were dead so no lift was possible. More impactful, though, was the lack of a phone. A cordless phone doesn't work when the power goes out. The only corded phone in the house was on the wall in the kitchen, well out of reach for her.

One time we lost power at home for hours while I was blissfully unaware of any problems at work where we had power aplenty. She was trapped on the recliner with no means to call anyone, no tv, no laptop, no internet, etc. until I got home from work.

So, soon thereafter, we went to Best Buy and bought a small Uninterruptible Power Supply (UPS). It's essentially a really big battery. They're rated according to the approximate number of minutes/hours they can power your computer in the case of a power outage. We have everything around Skip's setup in the living room plugged into it ... phone, lamp, computer, and (before we gave it away) the recliner. So, even with an outage, Skip was no longer marooned in the gloom waiting for me to come home and rescue her. (Or at least provide company until the power came back on.)

Thursday, April 16, 2009

Belt + Suspenders + Belt

Skip isn't often alone in the house, but occasionally she is when I'm out running errands on the weekend or there's a 1-2 hour gap between the time I leave for a trip to see my parents and her aide comes. Last Saturday, I went off on some errands. As I left the last stop, I gave her a call so she could call in a take-out order for me to pick up on the way home (we often do this, I'm not much for cooking, I must confess).

When I got to the Cheesecake Factory 15 minutes later, there was no order for me to pick up. I called home a few times and just got a busy signal. Since we have call waiting, this could only mean the phone was off the hook. I realized Skip must have dropped the phone and then had no way to retrieve it. So, I placed the order, waited a bit for it to be filled then headed home. I knew just what had happened, so decided there wasn't anything to worry about.

Things were about as I had imagined when I got home. Phone on floor. Grabber that could have picked up phone also on floor. Frustrated Skip. One thing I realized with concern was her spanky new wheelchair has one key flaw ... the manual leg lifting apparatus. Medicare was willing to pay for two power functions: tilt and recline. The other 2 power functions available in the chair, power leg lift and the ability to raise the seat about 8", have to be paid for by us if we want them. Since both features cost about $2,200 each, we haven't purchased them. But Skip was sitting in her chair with her legs fully extended so really couldn't navigate anywhere. She couldn't get from her spot in the living room to anyplace else to grab another phone. (Or, more dramatically, get to a door and out of the house in a fire.)

So, time for some suspenders to back up that belt. And another belt, too. She has a pay-as-you-go cell phone that's permanently hanging off the manual chair she uses in the morning before getting dressed. Now, that moves to the power chair every day after she's dressed. Also, we had our home security system upgraded a while back to include a panic pendant ("help me, I've fallen and I can't get up" kind of thing) but she refused to wear it. I think it made her psychologically feel more disabled. Now she's got it on all day. So, she's got some options if the phone falls again. I think it's warranted with the weakness she now has in her hands ... lots of stuff falls out of them.

I just realized while I was writing this that the bedroom phone is on the headboard on my side of the bed. I think we'll have to move that within arm's reach for her...

Tuesday, April 14, 2009

Bird Poison for Fatigue?

Skip takes a compounded drug called 4 aminopyridine. It is a bird poison, but apparently can help humans with fatigue in the right dosages. Because it's not a patented drug, it needs to be purchased from a compounding pharmacy and it isn't reimbursed by her drug coverage.

When her neurologist first suggested it, I did a bit of research online about it. Interestingly, it seems to work better on MS folks who have the chronic progressive variety (not sure if Skip is chronic progressive or secondary progressive), are temperature sensitive and have had MS for more than 3 years. (I say "interestingly" because it seems most MS drugs are for those with the relapsing remitting variety.) It can help with fatigue and some other MS-related symptoms. I just found this great write-up from a site called The complete post can be found here, but here's the content I found to be most interesting:

Probably the most common problems people who suffer from Multiple Sclerosis (MS) face on a daily basis are weakness and fatigue. Also. many patients are faced with visual problems and with cognitive or concentration effects. Very few of the standard treatments have much effect on these situations. However, clinical research has shown that many patients can benefit from a little-known medication, 4-Aminopyridine (4AP).

What is 4-aminopyridine?
4-Aminopyridine (4-AP) is known as a “potassium channel blocker”. This means that it can block the flow of potassium ions in nerve cells, which results in a more effective nerve impulse traveling down toward the muscles. As you probably know, the poor nerve impulses in patients with MS is (sic) the cause of most of the symptoms of the disease. The improved nerve conduction provided by the 4-AP means that the muscles have a "louder signal” to tell them when to work and the stronger muscle contractions improve strength and fatigue in many patients. However for reasons not fully understood, the 4AP does not work in all patients. One study indicates that 75% of patients with MS report a significant clinical response, and that 80% to 90% of these people will benefit from long-term administration of the medication. Other studies report a lower response rate, around 30% to 50%.

Before using aminopyridine, Skip tried a number of things for her fatigue, most recently Adderall. She prefers the aminopyridine because, as she says, "I know how I feel when I don't take it .... weak." The other day we went to a baby shower (on Easter!) and we realized partway through the shower that she'd forgotten to take her noontime pills and they were sitting at home. She was quite the limp ragamuffin by the time we headed home.

Monday, April 13, 2009

Caregiver Aids #2: Suitcase Ramp

After I posted the Surehands lift piece the other day, Skip and I were talking about it and I decided there were a ton of things in our lives that could qualify as "caregiver aids." So, I thought a series of posts about them would be good. And as I thought about this further, I realized the posts could have value for others even when the MSer wasn't as disabled as Skip, since some of our aids have morphed over time, and I can discuss both the past and the present. For instance, the shower set up has gone through 3 distinct phases over the last 15 years, each of which might give some insight into someone with MS trying to decide how to handle shower access.

So, for the second caregiver aid, I thought I'd talk about our trusty suitcase ramp.

Only one of our friends/family members has a house that can be entered by getting up only 1 step, which I can easily navigate with Skip's manual chair. Everyone else has multiple steps or even a full flight of stairs to get into their home. So, when a wheelchair became the method of mobility outside the house, we bought a suitcase ramp. It's probably about 5' long, folds in half, is made of aluminum, and has a handle for easy carrying. Not heavy at all ... about 10 lbs. It has a slight lip on either side to keep from rolling off and the base is corrugated for traction (though I am still paranoid of slipping when using it in the rain). Before buying our Honda Element, we used to own a Toyota Camry station wagon. It fit in both vehicles, though not so well in the wagon.

It's ideal for just a few steps but, in a pinch, it can handle up to 5. For steeper inclines, I always use a spotter or 2, particularly going downhill. Going uphill, Skip faces forward. Downhill, she faces the same way and goes backward.

It has given us continued access to others' homes. And even a few restaurants and businesses. Typically, we boycott places that are not accessible, but occasionally need to get into a place that hasn't modified for access (in New England, there are a LOT of old buildings), and have found this gets us in the door.

We bought this over 10 years ago and it's still in great shape. If we were to make this purchase today, I'd look into the suitcase ramps that fold both in half and lengthwise. These can fold out to a longer ramp, which effectively reduces the incline to manage. I would be much more comfortable using it when there's 5 steps to navigate.

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.

Saturday, April 11, 2009

Caregiver Aids #1: Surehands Lift

Back before the Surehands lift came into our lives, I did a lot of manual transferring of Skip. She did use a transfer board when I wasn't home, but I'm an impatient sort and, when I was around, I'd often do the transfer myself rather than cool my heels while she transferred.

The transfer process involved ...
  1. positioning Skip's wheelchair next to the bed or recliner or toilet
  2. bending over and grabbing her upper arms about midway between shoulder and elbow
  3. pick her up into a standing position
  4. quickly pivot and plop her onto the wheelchair/bed/recliner/toiler
As I had recently turned 50, I knew this pick and plop method wasn't going to get us much farther. My back hurt most of the time. And, Skip's self-transfers were sometimes scary to watch and occasionally resulted in falls.

But, I really had no clue what was out there in the way of transferring aids. I'd always heard about Hoyer lifts and looked at them on various disabled products websites and eBay, but thought they looked like a real hassle. The main concern I had was, how will we get Skip into the hammock to do the transfer? That seemed like it would be as much work as an unassisted transfer. One day, someone in my MS Caregivers group mentioned her daughter used a Surehands lift. I checked it out online when I got home. The lift device made a lot more sense to me than the hammocky-Hoyer and it showed the option of installing the lift in the ceiling. We have a small bathroom, so the rollable Hoyer would never have worked there.

The rest, as they say is history. Found a local Surehands installer. Owner came out with a rollable version to try it out on Skip. It worked fine for her. He checked out the bathroom and bedroom and we discussed various options for installation. We settled on two separate rails and motors (pic shows the bedroom version), one for each room. The body support, as shown in the picture, has two grey supports that go under each armpit. Then a curved hanger goes under each thigh to complete the support for the transfer. The hangers come in different styles, depending upon the situation of the individual it's set up to transfer.

Mr. Surehands priced out the work using new and used equipment. It wasn't cheap, but it was very worth it! We went with the used equipment, where possible. The installation took about a day. They came and trained us on the use of it and we've been happily taking advantage of it ever since.

In the infrequent occasions I have cause to transfer Skip today, I'm struck by how difficult it is. Her leg strength is essentially 100% gone, so is pretty much a dead weight during the transfer. I can't imagine how we'd be handling the everyday transfers without the Surehands. I feel she and I are infinitely safer today with this tool than we were before.

Tuesday, April 7, 2009

Cranky Reason #7: Lack of Appreciation

Cranky Reason #7: I don't feel appreciated. Thanks to Tricia of Middle-Aged Mania (see blog link to the side, I have no idea how to imbed a link into my posts) for reminding me about this cranky cause. I have to say this one is a frequent cranky reason, but I am very conflicted about the whole need for "appreciation" as a caregiver.

After all, I'm going to be doing more around the house overall because of my physical capabilities in comparison to Skip's. She can't even get dressed without my assistance; it's not too likely that she'll be taking out the trash or folding the laundry. So more is expected of me. I'm doing stuff for Skip all throughout the day along with household activities and work. Do I expect her to say "thank you" every time I do something for her or around the house? Well ... no. But, maybe every other time. :-) And, Skip expresses her appreciation with "thank you's" a lot.

But seriously, appreciation is acknowledgment to me. When Skip lets me know that she notices and acknowledges the work I'm doing for her and around the house, that makes me feel great.

When I get cranky is when I'm feeling like it's been a while since the last acknowledgment. Or, what can make me feel most cranky is feeling taken for granted. I am really good at caregiving tasks and a lot of things are just taken care of seamlessly and easily throughout the day. It'll really get my goat when I've been taking care of all the usual stuff and Skip focuses in on the one item I neglected to take care of. That's when I say something like, "I took care of 99 of 100 things and you only noticed the one that wasn't done! " Crankiness quickly ensues.

De-crank strategy: Let Skip know with humor when I'm not feeling the love and acknowledgment. If I can use a joke, I can keep from getting mad. I also sometimes point out all the great things I've done for her so she can tell me how great I am. Anything to be made to feel special and not taken for granted will go a long way towards keeping the crankiness at bay.

Monday, April 6, 2009

Well ... Not Quite Opening Day

We've got a good steady rain going here, in the greater Boston area. So, the Red Sox have postponed opening day's game until tomorrow at 4pm. Guess I'll just have to be patient until then.

Opening Day

At last, today is opening day for the Red Sox (and most of baseball, for that matter). For the next six months, hardly a day will go by without a baseball game on.

I know this has nothing to do with being a caregiver, but I have been waiting since last October for today, so thought it worth a mention.

I'm not quite sure why I'm an avid baseball fan (also very interested in professional football). As a kid, we didn't participate much in organized sports in school nor watch/attend sporting events of any kind. Family activities usually centered around all the work outside that needed doing, such as working my father's huge garden or planting Christmas trees or forest maintenance (you get the picture).

Like all of New England (I suspect), I did pay attention to the Red Sox in the post-season of 1967 when they lost the World Series in 7. I can remember us stopping class (I was in the 7th grade) to listen to parts of the game on the transistor radio one of the boys in class had brought in. So, I learned early how much the Red Sox can crush your spirit! :-)

The next time I really paid any attention to professional sports was in 1981 when the Celtics ended up winning the championship. Somehow, I came upon the epic series against the 76ers that preceded the finals (as I recall) and I got hooked. Watched the Celtics religiously all through the Bird/McHale/Parish/Johnson/Ainge era. Especially loved the seasons where Bill Walton played with them. Guess I was a fair-weather fan as I stopped watching them when the team really started to stink.

Had always been aware of the Red Sox. Went to my first game at Fenway in 1967. Went to college a few blocks from Fenway Park but only went to one game during my college years and didn't watch the World Series in 1975 that occurred during that time. Got back into them in 1986 in the run up to the World Series, so suffered enormously with all other Red Sox fans when the ball rolled between Bill Buckner's feet and they gave away the Series. I blame that game not on him though. Instead, I blame Roger Clemens, Calvin Schiraldi and the manager (what was Buckner doing in the game at that point? They needed some defense).

In 2004, we decided to try out some of the handicapped-accessible seating at Fenway and discovered the pleasures of sunny Sunday afternoons at the ball park. We try to go a few times a year, though tickets are very expensive. And, due to the heat, we only go early or late in the season. There is a lot of seating around the park for wheelchair users, some of it great. In 2004, we sat in the monster seats (sub-optimal for wheelchairs, oh well), in the front row on the first base side next to the ball boy (these are the ultimate wheelchair seats IMO), and some terrible seats down by the Pesky pole where visbility is continuously obscured by those walking to and fro and whenever folks stand up. Since then, we've also tried the right field roof box, where you can get a table that seats 5 with waitress service, and also high up in the grandstand along the first base side, where you can buy more than only the wheelchair + companion tickets. For opening day 2005, when they gave out the World Series rings, we had seats in the front row of the bleachers, just behind the two bullpens. The great thing about all these seats is that, except for Yankees games, you pretty much have availability all throughout the season.

All in all, I am really looking forward to this year's baseball season. At 2pm today, we get underway.

Play Ball!

Saturday, April 4, 2009

Thinking About Vacation and Travel

With the warm weather at last taking hold (here in Massachusetts), thoughts of vacation and travel worm their way into my brain more and more.

We used to travel quite a bit, even with Skip in a wheelchair. We went through a period of going to Las Vegas twice a year, often combined with another stop, like Tucson or San Francisco. Once we did half the vacation in Northern California wine country with my parents (who'd been many times before so could show us a great time) and then off to LV for the remainder.

Air travel has grown to be a bigger and bigger challenge for Skip due to a combination of her increasing disability and stress about all the bad things that could happen (we've had a few mishaps in the air over the years, one of which almost caused us to miss our flight home from Anchorage). After our last trip to Las Vegas in April 2008, we decided that was the end of the road for air travel.

But that wasn't to be the end of our traveling days. There are a zillion places within reasonable driving distance that I'd love to vacation to. We have a modified Honda Element with a lowered floor and ramp to take us where we'd like to go with ease (you gotta love the "toaster on wheels," as we affectionately call the box that is the Element). Skip recently got a swanky Permobil wheelchair that has tilt and recline functionality, so she can have extra comfort riding in the car, reclining to rest whenever needed.

A few months back, one of our dear friends called and asked if we'd like to vacation in northern New England this summer, renting a home with a small group of friends. Most of us have traveled on cruises together, so we know we can travel together in reasonable harmony. Soon thereafter, she found a recently built place on a lake, that can hold 8 and was handicapped accessible. How cool is that?

But what does handicapped accessible mean? Based on the description of the house, I know it will mean you can get in and out of the house and to all levels within (it has an elevator). I expect it'll have wider hallways and doors (at least I hope so, to minimize the dents and dings from the power chair). The bathroom will have railings all around. But, will it have a roll in shower or a tub? If the latter, this will make for a very tricky situation when it comes to bathing. Transfers from/to bed and toilet will also be interesting. Skip hasn't used a transfer board in about a year and a half, since we had SureHands lifts installed in the bedroom and bathroom. For that matter, I haven't had to lift her from chair to bed in all that time either.

"Vacation" can be an ironic term for the caregiver. Of course, there is no vacation from caregiving, only from work. And, when you travel on vacation, the caregiving can actually become more difficult because you're away from some of the modifications in your home that make life easier for both of you. Historically, I've looked at the greater caregiving work as a reasonable trade-off for the opportunity to go to all the great places we've visited, and see/do the things we'd never have been able to experience otherwise. But as Skip's disability has increased and I've aged, making do without our home accommodations seems more daunting.

So, as I think about our 2 weeks in Maine this summer with great friends, I know I have some preparation to do.
  • Data gathering - how is the bathroom set up? Is it a roll-in shower or a tub? Even though the house is a 3-hour drive from here, I'm seriously considering a day trip to go see it in advance, assuming the owners will be willing to go over and let me in.
  • Practice transferring - can Skip still use a transfer board herself (I suspect not)? Should we use a standard wooden board or will the fancy-dancy Beasey board be needed? Will transferring be dicey enough with a board that we just revert to me handling the transfer by picking her up (we call it the "pick and plop")? That was our primary transfer method in the period prior to installation of the lifts.
  • Swimming - apparently, there's handicapped-accessible access to the water. What will we need to get Skip in and out - her shower chair on wheels? Is there a flotation device that she could reasonably transfer onto/off of so she can while away some time floating on the water?

I look forward to a wonderful time this summer in Maine. But I know that wonderfulness will result, in part, from a good dose of forethought and planning. That's no burden. As any of my friends could tell you, I procrastinate about just about everything except for travel planning! So, the preparation will just increase my anticipation for the actual event.

Oh, in case you're wondering, I've already checked on black flies in that part of Maine in the summertime. Shouldn't be bad. Yay!

Wednesday, April 1, 2009

Things Are Going Well

I just posted a "cranky reason" post, a very embarassing one for me to own up to. I feel that it was possible to do because I've been in a good frame of mind of late. And, I think some of my earlier postings of cranky reasons have actually helped me.

One particularly challenging time of day, when I'm prone to be crabby, is at bedtime. Yesterday, I got up at 4:30am because I had a presentation to write and send out for review before the start of the business day. So, by evening I was whipped. I knew I'd be falling asleep on the couch, which I did before 9pm. Skip woke me around 11 so we could go to bed.

Back in the day, when Skip was more able, I'd have gone to bed at 9 and she'd have come in when she was ready. Even in the early days of wheelchair use, she could have transferred herself on to the bed and would have needed little assistance (if any) to get undressed and settled in. She even took the dog out before bed.

Now, when we go to bed, virtually all tasks fall to me, so I'm putting both of us to bed. This at a time when all I want to do is crawl under the covers and get warm (I'm always cold in the house ... Skip's temp comfort zone is lower than my comfort zone, so blankets and throws are needed year round to keep the chill away.). It's easy for me to get crabby, even without the slightest snag or issue.

Last night, when I woke up, I mentally noted to myself that I could get through this next 15 minutes or so without crankiness. I'd get us both settled and would be asleep again soon. Sure, enough, I maintained my reasonably good spirits and we got settled in with no crabbiness. I think it was the conscious thought ... you can do this without crankiness ... that helped make it manageable. Isn't that how new habits are built? You consciously think about the change you want to make in order to avoid the bad habit. Over time, the new pathway is burned in and you can move forward without the need for conscious thought.

I'm optimistic good changes are happening.

Cranky Reason #6: This Shouldn't Be Happening

Cranky Reason #: Denying reality. I like to say I'm "reality-based," but, in reality, that's more of a goal than fact. Because if I was truly reality-based, I wouldn't get so cranky when something happens to Skip that I wish had never occurred. The other day, Skip went through a series of being unable to right herself when bending over. So, about 6 times over the course of an hour while I was working, she called out for me to come and sit her up. I just felt so crabby about this ... if she just stopped bending over, this wouldn't be happening! Back in the days when she was semi-mobile, she fell with regularity, sometimes in situations that, in my opinion, were totally avoidable. Then I'd get cranky. I have a few particularly unpretty memories of yelling at Skip while she was lying on the floor, post-fall. I had to make sure and express my crankiness before helping her up.

De-cranky strategy: Honestly, I think this is a case of me trying to impose my able-bodied reality on Skip's situation. Things are different for her than me. So, maybe if I try to be a bit empathetic (not a strong suit for me), I can remember that how we got here is less important than just fixing the problem. Trying to think through different strategies to avoid the problem are best done in a less charged atmosphere after everything is set to right and I'm not approaching the issue with such aggravation.