Caregiver Aids #7: Shower Chairs

To ensure Skip's safety while showering, we've gone through a series of shower chairs, each better able to accomodate her increasing disability.

The first photo shows the kind of seat we started with when Skip merely needed something to sit on in the shower because of leg weakness and minor mobility problems. These are inexpensive and come with a variety of options, including handles, an extension for transferring into a tub and a seat back. During the period this was used, Skip could step into and out of the shower stall (~ 4 inch lip to step over) and hold herself upright with a strong trunk.

When something with more stable support (that is, immovable seating with back support) was required, we settled on the wall-mounted, folding seat shown next. It worked extremely well, giving Skip a very safe shower as long as she was able to get into the shower by walking into the bathroom with her walker or could stand and make a one-step transfer from a wheelchair. We also installed two grab bars in the shower stall and one on the wall beside it to aid in safe transferring.

As Skip's mobility capabilities decreased, she became unable to make the transfer between wheelchair and shower seat. The distance was too far to make via transfer board. So I became the means to transfer for a time. This transfer was quite awkward and sometimes resulted in a fall for Skip. Clearly, not a good solution for Skip (or me).

We started to look around for other options. We were hampered by the dimensions of the shower stall door opening. The ideal would be to find a wheelchair that could be used in the shower and would fit through the stall opening and over the low lip. All the different sites that specialized in wheelchairs we looked at did not have a chair that met these criteria.

Knowing we'd need a different shower chair eventually, even if it wouldn't fit the current shower, I purchased the chair shown in the last photo from SpinLife.com. Its measurements looked like it would be a bit too wide to get through the shower door. But, it was less than $200 with free shipping, so I figured it was a low risk purchase. The feature I liked best about it was the arms lowered so we could have Skip transfer into it with a board from the bed. I could then wheel her into the bedroom and get her over a lower lip into the shower stall. Unfortunately, as I suspected, it didn't fit width-wise through the stall door. For me, this sealed the deal that we'd need to look at reconfiguring the shower as there seemed to be no remaining options available.

We had the interior of the shower expanded, the front lip lowered to just a few inches and the door removed entirely. Now we had plenty of room to get Skip's shower chair in. The lip proved to be a bit of a strain for me to pull Skip and shower chair over, so we bought an inexpensive ramp made of airplane aluminum on eBay. I believe this kind of ramp is called a threshold ramp, since it's designed to get a wheelchair over a one-step threshold. Worked perfectly in this situation. We don't use either the commode bucket or the front pedals on the chair, as shown in the photo, both of which were easily removed.

Since the shower was redone about five years ago, we've been using the shower chair from SpinLife. Before purchasing the Sure Hands lift, I'd "pick and plop" Skip from the bed to the shower chair. (My hope of using the transfer didn't really pan out, as the seat of the shower chair is fairly slippery.) Once in place on the chair, I'd wheel her into the bathroom. Then, pulled the chair up the threshold ramp and into the shower. The wheels lock to ensure stability. Now, with the lift, we place the shower chair in the shower, then transfer her from wheelchair to shower chair.

Even as Skip's trunk muscles have weakened over the last few years, the shower chair has proven a safe tool for showering. Though it's the cheapest wheeled shower chair we found (some cost thousands), it has met our needs for Skip's current disability level. For someone with MS who can no longer walk but can sit upright without slumping over too often and can hold his/her head upright, I'd recommend taking a look at this option.

Cranky Analysis: Relaxation

As I mentioned yesterday, the American Psychological Association webpage concerning controlling anger contains six strategies to keep anger at bay. The first is relaxation.

Relaxation

Simple relaxation tools, such as deep breathing and relaxing imagery, can help calm down angry feelings. There are books and courses that can teach you relaxation techniques, and once you learn the techniques, you can call upon them in any situation. If you are involved in a relationship where both partners are hot-tempered, it might be a good idea for both of you to learn these techniques.

Some simple steps you can try:

• Breathe deeply, from your diaphragm; breathing from your chest won't relax you. Picture your breath coming up from your "gut."
• Slowly repeat a calm word or phrase such as "relax," "take it easy." Repeat it to yourself while breathing deeply.
• Use imagery; visualize a relaxing experience, from either your memory or your imagination.
• Nonstrenuous, slow yoga-like exercises can relax your muscles and make you feel much calmer.

Practice these techniques daily. Learn to use them automatically when you're in a tense situation.

I have to admit that, of all the strategies described by the APA, this one struck me as the least usable for me. However, I finally just hooked up our Wii, including Wii Fit, which includes a yoga section, so there might be some synergy here between use of the Wii Fit and this strategy for crankiness control. (Oh, and in the interests of full disclosure, I must confess the Wii was really hooked up by one of our Canadian guests. Another item on the to do list taken care of by them!)

So, two things I'll take from these recommendations: trying the use of a calming word when cranky and using yoga (with Wii Fit) as a means, in general, to build feelings of well-being and reduce stress. When I get cranky, I often jump to extreme words such as "never." I'm thinking a calming word such as "relax," or "take it easy," as suggested above, could be a replacement for that language to help bring me up short to see how I've wired my reaction to be extreme.

Skip, the pups and I are going to Cape Cod today to visit my parents (and eat lobster), so we'll be in the car together for two hours each way. I can believe there will be an opportunity for me to try out the calming word strategy.

Back to Cranky Analysis

Following a recap of my de-crank strategies, I came to the conclusion that communicating and thinking (before I responded crankily) were the top two strategies I could use to cut back on my crankiness. Employing these approaches has met with limited success. I am often still reacting too quickly and going straight to cranky rather than stopping to think and react in a more productive way.

I thought a review of what's available on the web around "anger management" would be worthwhile. Not surprisingly, I found a lot of attempts to sell me solutions, such as seminars. I also found a whole new arena of "Wiki" things ... wikihow. Wikihow is subtitled as "the how-to manual that you can edit." The Anger Management category has 34 articles that range from silly to good. Primarily, they contain a laundry list of techniques to use to control anger. A lot of the content had merit, but I didn't find it any one article that really felt "sticky" for me. There were good ideas, but mostly just lists of tips without much meat. Then, I found a webpage that really resonated with me. It's a page from the American Psychological Association's site, called Controlling Anger Before it Controls You. It discusses strategies for keeping anger at bay. They are:

• Relaxation
• Cognitive Restructuring
• Problem Solving
• Better Communication
• Using Humor
• Changing Your Environment

I thought I'd look at each in their usefulness for me and my particular situation. I'll look at each in a future postings.

Before I get to that, though, one paragraph in particular caught my attention:

People who are easily angered generally have what some psychologists call a low tolerance for frustration, meaning simply that they feel that they should not have to be subjected to frustration, inconvenience, or annoyance. They can't take things in stride, and they're particularly infuriated if the situation seems somehow unjust: for example, being corrected for a minor mistake.

I have often thought about my cranky reactions in the present day compared to my temperament in the past. I am definitely more prone to react angrily today than I was, say, 10 years ago. I think my life situation, very demanding and stressful that it is on so many fronts, has taken away much of my resilience and flexibility, making it harder to "go with the flow" when I am subjected to a "frustration, inconvenience, or annoyance." One thing that can make for a bad cranky cycle is that I get angry with myself for being so quick to react crankily. This just amplifies the bad feelings.

Maybe I should cut myself some slack. Skip and I are doing a great job dealing with the hand we've been dealt. It's a situation tailor-made to include frustration, inconvenience and annoyance. Give yourself a break, Cranky!

A Lovely Weekend Was Had By All

Our friends from Ontario were here Friday through early Monday. It was thoroughly enjoyable. More than that, it was great!

On Saturday, we went into Boston with the intention of walking a bit of the Freedom Trail. Our first (and, as it turned out, last) stop was at the Public Gardens where these photos were taken. The weather had turned absolutely beautiful, sunny and warm but not hot. We cruised around in the "Gahdens" (using the local accent). Saw the swan boats. Stopped and fed ducks and geese.

In the Gardens, Skip encountered a couple of issues that prompted a change in plans. First, she was feeling quite weak and began slumping to one side in her chair. Then, her chair battery began showing very low on juice. This was quite odd, as it'd been fine before we left the house. (I have since developed a theory on this. If you drive around quite a bit with the tilt or recline at a fairly significant angle, you appear to chew up juice very quickly. Reduce the amount of tilt/recline and the battery situation instantly improves. Odd.)

We limped back to the "cah," pahked under the Boston Common, and headed back towards the suburbs and home. We thought with the battery problem, we'd pick up take out and head home, not wanting to risk losing all remaining juice while out. However, the battery seemed to recover while en route to Legal Seafoods, so we were able to eat in the restaurant.

Our friends also helped with my "to do" list! We purchased a gazebo on Saturday morning and they proceeded to set it up. In retrospect, with the number of parts and its complexity, had I been left to my own devices, this gazebo would have sat unassembled on the patio for the rest of the summer. Together, they set right to putting it together on Saturday morning whilst I was helping Skip and such. The job was finished on Sunday morning, even to the extent of stringing lights inside for an added touch. We enjoyed it with them on Sunday evening, Skip and one of our friends enjoying Cuban cigars brought from Canada for the occasion. The other two of us staying out of the smoke, enjoying a drink, the company and the lovely evening.

The other highlight of the weekend was a cookout at the home of another couple, whom we love dearly, who had introduced us to the couple that was visiting us. These folks are great hosts, put on a great meal featuring barbecued ribs. Post-barbecue we sat on their deck and laughed and visited.

It was a decidedly uncranky weekend. Lots of laughter, occasionally of the helpless nature. Can't wait for them to come back.

On a Short Vacation

Took Wednesday - Friday off this week and the US celebrates Memorial Day on Monday, so getting a nice stretch of time off without using too many vacation days.

Wednesday was a perfect day. The weather was absolutely perfect --sunny, low 70s F. MW, Skip's aide, took her out to get a hair cut and take a trip to Home Depot. While they were out, I started to make some headway on the home to do list. When they got back, they sat out on the patio for a bit to have cigars (Skip's number one vice). After a while, I sat and visited with Skip. No pressures, unbelievable weather, our anniversary. Just lovely.

Yesterday, friends from Ontario arrived. They'll be with us until Monday morning. It's great to see them; it's a drag they live so far away.

Today, we're heading into Boston to walk part of the Freedom Trail. The Freedom Trail is a path that links a dozen or so historic sites in the city together. It starts in the Boston Common (which is a large park in the center of the city), goes to the State House, on to some historic churches and so on. As a long-time resident of Boston and surrounding towns, I, of course, have never walked the Freedom Trail. I'm looking forward to it. I've never been inside most of the stops along the way but have driven or walked past most all of them hundreds of times.

Surprisingly, the Freedom Trail's website does not give mention to handicapped accessibility info on the buildings included. I am cautiously optimistic that these historic sites are accessible. (Of course, I remember on our trip to Washington, DC, the elevator at the Lincoln Memorial was broken and Skip couldn't get up to see the amazing Chester French statue of Lincoln.)

One fun thing we'll do at the start of the day is walk through the Public Gardens (which are next to the Common). It should be lovely this time of year. Skip especially loves spending time in the Public Gardens and Boston Common because the squirrels are very tame. If you have peanuts for them, they'll come right up to you for the treat.

We have a slight chance of showers forecast for today. We'll bring our umbrellas, but I'm cautiously optimistic we won't need them. Today should be quite a treat.

Hitched 5 Years Ago Today

Today is our 5th wedding anniversary. As I wrote in this post, Skip and I had a civil union ceremony in Vermont in 2001 which proved to be a wonderful time for us, with lots of love and support from family and friends. When we were finally able to marry in Massachusetts, we opted for something small and simple.

We had a few of my family here for the afternoon. My parents, both siblings (brother and sister) and my brother's son. It was nice that the son could attend since he was on a school trip to Europe when we had our civil union, so wasn't in Vermont with us. Also with us for the occasion was a photographer who had taken pictures of us in two prior sittings over the last 15 years. She had been trying to publish a book of photos of gay couples and we had agreed to be subjects way back in the early 90s. She'd come again about 10 years later to do follow-up shots. She hadn't managed to find a publisher and was now looking into switching the book's focus to same-sex marriages. She came and took lots of photos of the event ... it was like having a professional photographer for free! (Still no book, though.)

Our minister took the vows she wrote with us for the civil union and amended them slightly for the situation. We sat in a little cluster of 3 chairs in the living room, our small group of guests around us. My parents cried! I love how supportive they are of me. Actually, I think everyone cried. When we finished the ceremony, our minister signed the marriage license and it was done. This was the first marriage license she'd signed in over a year as she stopped signing them for heterosexual couples until gay couples could legally marry. We felt quite honored that she ended her boycott with us. (She still performed weddings but the couples had to have another party sign the marriage license.)

We had a bit of cake and enjoyed the company of our small group. Opened a bottle of champagne as well. Our relationship the day before was just as committed and binding in our hearts and minds as it was following our marriage on May 20th. But, we were happy and excited that our state had chosen to give our relationship full legal recognition.

Oh, and I was able to add Skip to my dental plan at work, too. My employer did not offer domestic partner coverage, but with the change in the law here in Massachusetts, they opened up medical and dental coverage for same sex spouses.

Caregiver Aids #6: Friends

Friends are there for us to help in a pinch, when an emergency hits. In the years when I worked at an office and traveled quite a bit on business, we needed them in a pinch quite a lot and worried we might be imposing too much on some of our friends. Sometimes all we needed was someone to check in on Skip because I couldn't reach her and I was out of town. Sometimes I'd be delayed getting home and a quick meal delivery was needed. And, occasionally, Skip was rescued from some bad situations by the assistance of some wonderful folks.

For example, one time, I tried Skip a number of times from the Philadelphia airport to give her an update on the timing of my arrival home. Phone rang and rang and rang. I called our friends who lived nearby and they went over to find the phone was out of order. They were able to check in on Skip, confirm all else was well and I knew she'd be in good hands as I got on my flight home (this was pre cell phones, so no way to get in touch again until I touched down in Boston).

Driving to the San Francisco airport one Friday afternoon in 2001, I called home to check in on Skip and heard a horrifying story. She had gone out onto the patio earlier, which required rolling down a short ramp. Going back up the ramp, she managed to somehow flip herself backwards, fell out of the chair and hit the patio cement with her head! She crawled back into the house, got to the nearest phone and called a friend who was home during the day. The friend and her sister came over and got Skip back into her chair, cleaned her up and tended to the egg-sized bump on her head.

When we traveled on vacations quite frequently, we often went with friends, who helped us out in innumerable ways. When Skip used a manual chair, there would often be volunteers to take a turn pushing her. I'm not much of a shopper, so there'd frequently be someone to step in and go with Skip to the next store when I had hit my limit (I don't think Skip has a shopping limit :-) ). If we were on a cruise and Skip wanted to go to the evening's entertainment but I wanted to shoot craps in the casino, there was always a group going to the show and Skip could go with them. Since caregiving doesn't go on vacation, it was always great to have a short respite, provided by our dear friends.

Oddly, the most recent emergency came about because of something that happened to me. In November last year, I went through two bouts of vertigo that each lasted more then 10 hours. During these bouts, I couldn't move my head without inducing violent vomiting. The first time it happened, Skip's aide, MW, was coming to work that day and ended up putting in an extra long shift. First, she went to the emergency ward to be Skip's eyes and ears to see what was happening to me (I had been at an ENT's office to have my ears checked when the vertigo came on and they sent me to the ER). Then, she stayed with Skip all through the evening until I was okay to travel home. Finally, she picked me up and brought me home. The second time it happened, 2 weeks later, MW wasn't available. I was stuck in bed unable to move my head so was no help to Skip. Fortunately, a friend of ours came to the rescue. She brought in food, took care of Skip, checked in on me, and got us through the pinch. (Fortunately, the vertigo has not returned.)

Mostly, we look to our friends for love, support, fun, laughs and good times together. Occasionally, we impose on them for an extra measure of support. We are lucky to have them in our lives!

The Day We Applied for a Marriage License

Today in Massachusetts many are celebrating the day 5 years ago when same-sex marriages became legal. On a personal level, this is the 5th anniversary of when we applied for a marriage license. We married 3 days later, after the waiting period expired.

Six months before May 17th, the state supreme court handed down the decision that gays could legally marry here in Massachusetts and gave the state 180 days to get its act together and prepare for the change. Our Governor, Mitt Romney (whose wife, coincidentally, has MS), fought tooth and nail from thereon to halt this change. There were other attempts from other quarters to stop it. They all failed.

Since I'd convinced Skip to "civil union" me in 2001, it was a foregone conclusion that we'd marry. I tracked the developments closely, selfishly, glad the decision from the supreme court seemed impossible for the naysayers to overturn. As the day approached, it seemed more and more likely that we'd actually be able to marry. But, first, we needed to get a marriage license.

At the time, we were pretty active in the local Unitarian congregation. Unitarians are Protestants, way out on the left fringe and typically have congregations filled with liberals. Our congregation was a typical Unitarian one. We also had a lot of lesbian couples. Many of us planned to get married after the law changed. The minister and some members of the congregation decided to have a little celebration and join those of us applying for licenses by coming with us to the town hall, which happened to be across the street from the church.

We all gathered at the church in the morning for breakfast and a little party. The minister gave roses to the couples who were getting hitched and spoke a few happy words (she loves rituals). Shortly after 9am (when town hall opened), we trooped en masse, straight and gay alike, across the street and descended on town hall. With about 5 lesbian couples and a straight couple already there to apply plus our entourage of supporters, we filled up the small clerk's office.

We took photos, filled out paperwork, smiled broadly and generally had a great time. In about an hour's time, Skip and I had completed our paperwork, paid the small fee and were ready to get hitched 3 days later.

When our minister told us she'd planned the license application event, I thought it was a bit "over the top" and unnecessary. It would have been just fine for Skip and me to head over to the clerk's office and apply for the license as just the two of us. Turned out, it was so much more fun and festive to have the congenial company and support of our fellow Unitarians.

When Do You Help?

Skip likes me to read to her my most recent posting(s) and any comments I've received. Last night, I read her the two I'd posted earlier in the day, including the slippery slope musing. That prompted a discussion about washing her hair. I said something to the effect that she could wash her hair, it was physically within her capability. She thought about that for a bit and agreed that she could, though not always. (Of late, when she's done with her shower, she can be quite wiped out and fatigued, so adding hairwashing might result in finding just a limp noodle in the stall when she was done!)

This got me to thinking more about a concept I'd been thinking about adding into the slippery slope post but didn't feel it really belonged there. And, that is, when do you help? When you consider the array of care I provide for Skip every day, some tasks are absolutely required and others are not.

Skip can't get into or out of bed on her own anymore. Even with a transfer board, she does not have the physical strength and capability to get from one spot to the other. Any transferring activity, then, must be performed by me. Some things she can't do because of external barriers combined with limited physical capability, such as make a meal. We have not modified the kitchen to make it very accessible for her. That was never a priority because her mobility and fatigue issues made meal prep impractical for her.

Like hairwashing, though, there are things Skip could do for herself that I do for her instead. Say she wants some popcorn as a snack. I'll bring her a bowl and the bag of popcorn and then she'll take it from there. If the kitchen was set up to store snack food and bowls at a reachable level for a wheelchair user, she could take care of this herself. She'd also have to move the rolling table I place in front of her each day when she settles in at her spot in the living room. When she returned from the kitchen with bowl and popcorn, she'd have to get back in position and reposition the table so it fit around her wheels again, all without pulling out the laptop power cord. While it's conceivable she could do all this, we've taken the more expedient approach of me bringing the bowl and snack when she asks for it.

When you look at the mix of tasks I perform each day for Skip through the lense of "could Skip actually do this for herself?," you'll find the answer is sometimes (often?) "yes." But we've chosen "no." Why?

• Safety. Because of Skip's lack of mobility and lack of hand strength and feeling, a number of tasks that she could do could sometimes end in failure and a possible fall or other harm to herself.
• Impatience. Being able-bodied, I can do most things faster. I'm impatient. When Skip had more mobility, I often would transfer her from wheelchair to bed rather than wait for her to use the transfer board because I didn't want to wait.
• Caring. Face it, I'm not in this role just because Skip needs it. I like the opportunity to help her and show love and caring through that help. That can make it easy to help her out when she is struggling and I know I can do the task more quickly and easily.
• Barriers. While our house is pretty good from an accessibility perspective, there are still barriers we could have removed with modifications. We've chosen instead to deal with those barriers by me helping Skip.
• My capacity. In the early days of MS, I wasn't doing too much to help, so it wasn't as big an issue to take on a task in support of Skip.
• Limited energy. This is the number one reason why I perform tasks Skip could do for herself. If she washes her hair, that uses a lot of a very limited resource: energy. If she spends her limited energy allocation on something like that, she'll have less ability to handle all the personal care tasks at the sink after her shower. Or, she'll have less energy to handle silverware when eating breakfast. And so on. I think we both look at her energy level as a finite store for the day. Every time you draw on it, there's that much less to use later on in the day. We husband that resource carefully. Skip doesn't have much reserve, so we need to be thoughtful about the things it gets spent on. As a result, I try to help out on basic tasks (like washing hair) so she has some oomph left for the things that she values more and that add quality to her life, like typing on a keyboard when she's at her laptop.

I realize from writing this post that we've made a lot of choices over the years to shift tasks from Skip to me in support of her day-to-day existence. By choices, I mean, she could still do many of these things, but we've decided I'll take them on. We need to continuously monitor the level of support she needs and make sure we've got the right division of labor in place. That way, Skip can maintain some independence and sense of competence and I keep from feeling stretched beyond my capacity to give, that I feel love in the giving and not burdened by it.

Four-Legged Destressors

Some more shots of our two great pups. The middle two are of Sally in her perenial hunt for chipmunks in the wood pile and the air conditioner (yes, there is a chipmunk that somehow lives in the AC unit). With the warm weather back, she has resumed her chipmunk hunting with vigor and spends a good portion of the day outside exercising her huntress skills.

Had a very stressful work day on Wednesday. Have been taking the girls out for brief walks in the early evenings but had missed a few days of late. After work, just wanted to crash on the couch but ended up taking them out for a quick jaunt and was happy I did. So good for the spirits to spend a time enjoying the company of dogs out in the fresh, cool air. I love to see how their two personalities play out, even in their walking styles. Sally is head up, tail cocked, bopping along, taking it all in. Ruby, a bit chunkier, is working harder to maintain the pace and periodically must come to a complete stop to closely examine some great-smelling thing on the side of the road.

The Slippery Slope

Chronic progressive MS is like a trip down a long, slippery slope. The sad reality is (at least in our experience), that once you've slipped down an inch or a foot, you're never regaining that territory again. No new symptom, once experienced, has ever gotten better for Skip (except for a bout of optic neuritis where her vision seemed to regain some lost ground). As Simon and Garfunkel said, "once it goes, it's gone."

Skip didn't go from fully able-bodied to her current state overnight. It took over 20 years, with a lot of small losses piling up to get here.

Caregiving to someone on the slippery slope of MS is also a slippery slope. Just like her disease progression, the amount of aid and support I give her in our daily routines also built up over a period of many years, bit by bit.

Awareness of this effect gives me concern whenever a new bit of support needed from me inches towards the status of habit. When we were in Las Vegas last year, the grab bars and seat in the roll-in shower in our hotel room were positioned such that Skip could not keep herself sitting upright and have a free hand to wash her hair. So, I washed her hair for her during vacation. It made her feel good (doesn't it always feel great to have someone wash your hair?) and I was happy to do it for her. Upon returning home, we continued this practice for a bit because Skip's arms were feeling weaker than normal. Slowly but surely, the hairwashing continued. It's a habit still in place today.

Skip and I both use the term slippery slope when speaking of her MS progression. Answers.com defines slippery slope as "A tricky precarious situation, especially one that leads gradually but inexorably to disaster." I don't see disaster as the final state for us. I know we will continue to grapple with the losses and life will probably get harder for her and us. We will do all we can to slow the slipping, deal with whatever happens and hope we never hit bottom.

But, now that I've read the definition, I think I'll stop using this term.

Learning From My Mistakes

My post on May 6th concluded with the idea that I needed to stop and think for 3 seconds before having a cranky reaction. Yesterday, I had a chance to give that strategy a try. Skip had a medical test in the afternoon I was taking her to, so I was trying to cram a bunch of work stuff into the morning, get her showered, dressed etc and get myself ready to go out as well. As the time to go got closer, Skip kept calling out to me for help while I was trying to jam a lot of work stuff in ... conference call, emails, etc.

After I hung up from my last call of the morning, I had a 20 ft walk to the bathroom to give her a hand. During that few seconds of walking, I thought to myself, "okay, here's a chance to have a non-cranky reaction." But, then, I decided I wanted to get mad. I thought it would help me make my point, whatever that was.

So, I went into the bathroom already cranky, as I'd decided to be, and barked at Skip. Instead of helping me get over my bad feelings, I realized, the barking made me crankier! The end result of this was that I made Skip feel bad and myself more bad. So, what good was that for anyone? This realization also coincided exactly with what I'd read in some of the research I've been doing on anger management, about which I'll be doing some posts soon. Apparently, it's a fallacy that letting your anger out releases it. Letting it out increases it. If you can express your thoughts and feelings without getting cranky, you'll have a much better chance of releasing that crankiness and creating positive change.

Some of my best learning over the years has been from making a mistake, realizing the mistake, and then consciously taking steps not to repeat it. So, I think my getting cranky here and then being able to view the outcome in light of new knowledge will be very helpful in prompting some behavior changes.

Music About Love Through the Years

As I mentioned in a prior post, I drive to Cape Cod to visit my parents every 2nd or 3rd Saturday. It's a 2-hour drive each way. Our Honda Element has a good sound system and you can listen to your iPod through the car's speakers.

During yesterday's trip, I heard one of my absolute favorite songs, performed by Steve Goodman, "The Dutchman." The lyrics are great and the instrumental accompaniment is perfect for the song.

The Dutchman's not the kind of man
Who keeps his thumb jammed in the dam that holds his dreams in
That's the secret only Margaret knows
When Amsterdam is golden in the summer
Margaret brings him breakfast and she believes him
He thinks the tulips bloom beneath the snow
He's mad as he can be
But Margaret only sees that sometimes
Sometimes she sees her unborn children in his eyes

CHORUS: Let us go to the banks of the ocean
Where the walls rise above the Zuyder Zee
Long ago I used to be a young man
And dear Margaret remembers that for me

The Dutchman still wears wooden shoes
His cap and coat are patched with the love that Margaret sewed there
Sometimes he thinks he's still in Rotterdam
And he watches the tug boats down canals
Calls out to them when he thinks he knows the captain
And Margaret comes to take him home again
Through unforgiving streets that trip him though she holds his arm
Sometimes he thinks he's alone and he calls her name
Chorus

The winter whirls the windmills 'round
She winds his muffler tighter
They sit in the kitchen
Some tea with whiskey keeps away the dew
She makes the bed up singing some old love song
She learned when it was very new
He hums a line or two
They hum together in the dark
The Dutchman falls asleep and Margaret blows the candles out
Chorus

I loved this song when I was young and had no notion of love loved over the years as we age and how that love is layered with remembrances of our loved one through the years. Now that I have a growing awareness of all that, it resonates so much more with me.

My love for Skip includes remembrances of the bold 25-year old who picked me up in a bar one August evening almost 28 years ago. The real party girl with the quick wit and devilish grin. (She still has the wit but is a bit slower to show off that great smile.) The golfer who taught me the world's stupidest sport so we could infuriate the other golfers behind us with our slow play. The woman who chafed at working in an office for an insurance company, leaving that behind to become a bartender and then a chef. She cooked me great meals! The independent woman. The friendly, smart, funny woman who drew people to her and then invited them into the hospitality of our home for great evenings of wonderful food, good wine and lots of laughs.

If you were an archeologist and could dig through the history of our years together, you'd find the love there, but you'd also find the inexorable influence of MS. How its demands twisted our existence. You'd see how more and more of our lives were given over to basic maintenance because basic maintenance took so much bloody time. How so many possibilities for the future were cut off because of the progression of the disease. You'd be angry to see how MS robbed Skip of her independence and gave her so much to fear, including her future.

Through all those layers, though, you'd see how we'd managed to keep it together, to feel privileged and lucky despite the encroachment of MS. You'd see that we stopped entertaining but still managed to meet new friends who mean so much to us. You'd see that I did the basic maintenance tasks for two, but that we could often use that time together to laugh and "be" together rather than just have one be nursemaid to the other. You'd see that we'd manage to make a lasting commitment to one another, no matter what comes. You'd see the fun and fireworks we've had over the years.

Caregiver Aids #5: Lift Recliner

When Skip was still ambulatory, though not for long distances, she used a walker around the house. As walking became more difficult for her, she would spend most of her day on the couch. Getting up from the couch became more and more of an issue for her, so we searched around for lift aids. The first we tried out was a seat lift, shown here, which you placed under yourself on the chair. When you went to stand up, the lift would give you additional oomph and help you stand. However, Skip found the device uncomfortable, so it didn't serve its purpose.

I'm not sure just when we decided to look into power recliners, but that was the solution we eventually settled on, and it worked for many years. Our mini-dachshund at the time, Sadie, was constantly by Skip's side on the couch, so we had to get a recliner with adequate seat width to comfortably seat both Skip and Sadie. As a result, we ended up buying a large recliner which proved quite expensive, but worked perfectly for years. The recliner allowed Skip to keep her legs elevated during the day, gave her a prop for her laptop (a constant companion) on the arm, space for the other constant companion, Sadie. And, most importantly, it performed a good portion of the work getting her from seated to standing position.

When Skip started using a wheelchair in the house, she eventually began to use a transfer board to get from wheelchair to recliner and vice versa. This was successful 99% of the time. Unfortunately, she did fall when transferring occasionally.

A few cons about the recliner:

• the large size version was very expensive
• I never saw a power recliner that wasn't pretty ugly. Our house is modern in design and somewhat in furniture so the recliner, design-wise, did not fit in
• the second one we bought (when the first wore out) was very uncomfortable for Skip and we eventually negotiated the replacement of the seat by the manufacturer. This took a lot of pushiness and perserverance from me over an extended period of time, but ultimately resulted in a good outcome.

The key pros:

• the recliner helped Skip retain her independence for longer than without it. Since she could get out of it on her own, she could be home alone during the day while I was at the office and did not need my help at bedtime to get from living room to bedroom.
• with an end table holding all variety of items beside her, Sadie and laptop on the chair with her, Skip had what she needed around her throughout the day

Now that Skip uses a wheelchair full-time during the day, the recliner serves no purpose for us. Fortunately, it has proved very useful for my parents. They, too, think it's pretty ugly but have grown to love it for its comfort. It was helpful for my mother to elevate her legs while trying to heal an ankle sore. When I visit them every other Saturday, I inevitably find one of them taking advantage of it when I arrive at their home.

Feeling Cranky - Laptop Died This Morning

Granted, this laptop has been a piece of %$#$# almost from the outset. I will never buy a Compaq again. It had a problem where it would overheat and shut down if CPU usage cranked too high. At first, this happened only when I was playing poker and had some software running that would track hands and display data about my opponents at the table. Then, it started happening when I was loading CD's into iTunes. Then, I joined Facebook and it seemed to happen frequently when I was logged into Facebook. This morning, I started it up and after about 1 minute of usage, it made a funny noise that immediately said to me "I've died," shut down and it won't restart.

Fortunately, we have an older laptop that still works, though slowly.

Now I just need to figure out how to get the stuff off the harddrive of the dead machine without paying someone hundreds of dollars to do so.

De-Crank Strategies Consolidated

As I mentioned in my last post, the next step in limiting my crankiness is to review my "de-crank strategies" from my 10 cranky reasons to recognize trends. If I can distill the reasons down to, say, top 3, it'll be easier to focus my attention on those.

To recap, my cranky reasons and the proposed de-crank strategies, are:

1. Work and caregiving conflicts - Communicate to Skip about work demands. Joke to defuse.
2. It's dark outside and patience and energy wane through the day - Check in with Skip before I sit down on the couch to relax
3. It's a habit - Conscious thought to break the habit
4. Our priorities conflict - Explain our reasons and feelings to build understanding
5. I get scared - No good ideas
6. This shouldn't be happening - Be empathetic
7. Lack of appreciation - Use humor. Point out great stuff I've done when I need appreciation.
8. The Red Sox (example of outside influences that have nothing to do with caregiving) - Turn it off. Shut it out.
9. This freakin' disease! - Remember the disease got us here. Acknowledge all it's robbed from us.
10. Don't tell me what to do - Take a breath. Collaborate with the other person to turn it into a collective solution rather than being told what to do.

So, I set up a little spreadsheet with the reasons and my de-crank summaries. Then, I created categories such as communication, humor, think and avoidance and put an "X" in each category that my de-crank strategy fell into. The tally:

• Communication - let's talk to each other, explain ourselves and our feelings - 5
• Humor - defuse the situation with a joke - 2
• Think - think before you react - 5
• Avoidance -turn it off, walk away - 1 (this was for the Red Sox reason)

The results make perfect sense. The keys are communicating and thinking.

Communicating. Because I work from home, Skip and I are together virtually 24 hours a day, 7 days a week. I think being together all the time, along with over 27 years together overall, allows us to think we know what the other person is thinking. We can forget that our assumptions can easily be wrong. It's good to check in and get it straight from the horse's mouth. And, I like to hear what Skip thinks and feels about things; she can be pretty quiet, I'm often struck by how thoughtful she is when she does share her thoughts with me. When we do really sit down and discuss things - issues, priorities, beliefs - it always ends up with our feeling closer to each other.

Thinking. To me, the act of thinking to avoid crankiness involves the exercise of control for about 3 seconds. This is the time between the action of another and the reaction you choose to have to that action. When Skip does something that falls into the "this shouldn't be happening" cranky reaction, I can immediately go into a cranky reaction or I can take 3 seconds to pause, exercise some restraint, and come up with a more constructive reaction.

Next up in the "cranky analysis" will be a review of what others do to manage their crankiness to see if I can steal (or, as Andy suggested, appropriate) some of their ideas.

Some Cranky Analysis

I have written about 10 different things that make me cranky, most of them in relation to my day-to-day role as a caregiver to Skip. Recently, when I've been cranky, I've tried to determine if the root cause was significantly different from the 10 reasons. From what I can see, I think the 10 reasons really capture the variety of causes that prompt me to crank out. I did think about adding "displacement" (taking your crankiness out on someone other than the causer of the crankiness), but that's not a cause. Also, thought about adding something on the order of "something's come out of left field that wasn't planned for," but that could fall into "our priorities conflict," reason #4, since it was something Skip would bring in from left field, or "it's a habit," reason #3.

So, I've got a pretty good list documented of what makes me cranky. I've noted some strategies for de-cranking my reactions in these situations. Writing it all down doesn't make it go away, though. How can I take the next step and make positive changes?

The first thing to do is look at the de-crank strategies and consolidate them into a few key themes. It's always easier to focus in on a few areas of concentration rather than 10. That will be covered in my next post.

From there, I'm going to start looking at what other folks say about managing anger in general or their anger in particular (that's what most people call it, I prefer crankiness) and see what I can steal from them in my quest for better management of my emotions.

Trust

Skip trusts me. She expects that I won't dump her out of her wheelchair, or hit her with the surehands body support as I swing it around into position before a lift, or otherwise cause her pain or damage. In fact, we have a running joke with the surehands lift. How close can I get it to her head without her flinching? She basically never does, because she just expects I have it under control.

Sometimes, though, the trust turns out to have been misplaced.

Skip probably started using a manual wheelchair for trips outside the house almost 20 years ago. We easily went more than 10 years from then before the first power chair came into our lives. So, I've been pushing her around for many years. In all that time, I've only dumped her twice.

The first came, ironically, just after we'd gone down a long ramp where I'd been talking about how amazing it was that she trusted me so completely while I pushed her around. Not 30 feet later, by our car, we hit a divot and over she went. A badly skinned knee was the only physical damage, fortunately. Skip was quite a bit more able then, so working together we were able to get her up off the ground and into the car without too much difficulty.

The second dumping happened about 5 years ago. It was the Friday closest to Valentine's Day and we decided to head into Boston to one of our favorite Mexican restaurants to have a romantic dinner. We took Skip's manual chair since it wasn't likely to be a long trip from car to restaurant. Despite the handicapped placard, we searched quite a while for a parking space on the street and finally found one a few blocks from the restaurant.

We got Skip loaded up in her chair and headed down the sidewalk towards our destination. It being February in Boston, there was snow on the ground but the sidewalk was clear. As we neared the point where we'd cross the street to get to the restaurant, I pushed the chair into a major crack in the sidewalk I didn't see and Skip went ass over teakettle, headfirst onto the cement. Oy!

I worked to get Skip sitting up and found she'd skinned her forehead and was bleeding a bit. Everything else seemed intact. My next worry was how to get her back into the wheelchair. I would not be able to lift her from ground to chair by myself, as she can no longer move her legs at all. A low flight of 3 steps at the entrance to an apartment building was about 5 or so feet away and I thought about the possibility of dragging her there to help get her into a position for transferring into the chair.

While I was standing there trying to figure out how to proceed, a petite woman walked up and asked if she could help. She said she was a physical therapist. While she stood there considering what to do, a young couple walked by. They got about 20 feet past us and then turned around and came back to see if they could help. The physical therapist positioned us around Skip with each of us in charge of a limb. We put the wheelchair behind Skip, the PT counted off "1-2-3" and we lifted her in unison and onto her chair! How great was that!

We thanked the couple and they went off on their way. The PT noticed Skip was bleeding and found some napkins in her coat pocket to help stop the flow. We thanked her profusely and she went on with her evening.

We were remarkably lucky on that early Friday evening in February to have 3 such generous samaritans there at the moment of our need.

We managed to get across the street and into the restaurant without further mishap. We settled in at the table and got some extra napkins to complete the clean up of her face. Skip was a bit shaken, but she's resilient and was able to recover her composure after a bit. As I recall, we ended up being able to salvage the evening with a lovely meal and wonderful Sangria. And, as you can imagine, I was extremely careful getting Skip back to the car to ensure no repeat.

It's true there haven't been many situations like this, but I am still amazed at Skip's complete trust and confidence. It wouldn't be so easy for me.

The Honey Do List

The weekend I've been craving is here. Yay!

This weekend, I'm hoping to knock a number of items off the "honey do" list. I've got the list prepared with the things that have been rolling around in my brain. Skip has pen and paper in hand as I write this to add a few items of her own (it is, after all, a honey do list). Her hands are bad and her writing has gotten fairly indecipherable, but we'll go through the items and I'll add them to my already long list of things to do. I've set some priorities and dependencies as well (can you tell I was a project manager through a large part of my professional career?). I can spackle the ceiling in the bathroom, but I can't paint it until I make a run to Home Depot for a new can of mildew-resistant paint.

I'm a procrastinator by nature ("really?," say my friends reading this blog, in mock surprise), so I'm slow to get around to the weekend stuff. I keep up with the basic things like laundry and dishes, but tend to put other stuff off.

This weekend, though, the list gets addressed so I crossed some items off. We have some friends coming for the weekend in 3 weeks, and I'm using that as a motivator. Basically, I have to have a good reason to get things done. "Just because" is never enough.

So, as soon as I post this, I'm going to start knocking that stuff off. Wish me luck!

Awards for Blogs and Bloggers I Enjoy and Admire

Recently, I received an "A Hoy" award from Herrad via Spike and Marleen's World's blog and an "Outstanding Bloggery" award from Andy of Jughead's Baltimore Blog. Thanks to both of them for the kudos! I'm passing these awards on to 5 blogs that I enjoy and admire.

The A Hoy award, per the A Hoy link, is about positive thinking. So, I really appreciate that a "cranky" blog got this award. :-) It has a distinct set of rules for nominations (copied from the A Hoy site):

Rules for Making an Award

1. Pick five blogs that you consider deserve this award based upon any criteria - for example, the quality of the commentary, wit, humour, artwork, overall design, value to you of the information being provided, and so on.

2. The awarding blogger should choose at least two blogs not on his or her own blogroll, the purpose being to encourage variety of reading matter, and to have the person making the award think about what they like to see and read.

3. Your five choices must be published in a dedicated post on your own blog. This post must contain the name of the author (which may be their logon name), and also a link to his or her blog to be visited by everyone. This post should contain brief details of what attracted you to the blog. Details may also be posted in the comments section of "What is a Hoy?"

4. In the same dedicated post, each winner has to show the award and acknowledge the blog that has given him or her the award.

5. Both those awarding and receiving A Hoy must show the link to A Hoy blog, so that everyone will know the origin of this award.

6. When publishing details of the blogs to which you have made your awards, these rules must be published for recipients to follow.

I nominate Anne from Disabled Not Dead. Anne's not on my blogroll because Blogger keeps giving me an error message whenever I add her url to the list. Though she's on vacation right now so on a brief hiatus, I check her site every day for postings. Her writing is excellent and I am interested in what she has to say.

I also nominate PB from Pat's Pond, a site I haven't gotten around to adding to my blogroll, but should. In addition to her excellent writing, I love her photos from her meanderings around the pond.

The Outstanding Bloggery award I pass on to 3 of the blogs in my blogroll.

First, to Joan at A Short in the Cord. I was first drawn by her analogy for MS. Then, the content kept me. I love, also, how she has a period call-in for MS folks on various subjects.

Second, to Diane at A Stellar Life. Smart, angry and posting about a variety of things, both personal and informative. I always am glad to see when there's a new post from Diane.

Third, to Lisa at Brass and Ivory, whose blog I find amazing. How does she do it all, I ask myself? The blog is a combination of subject matter expertise postings, personal stuff and a highly useful directory of others who blog about MS.

Shout outs to all of you who have made my browsing through the interwebs enjoyable, challenging and educational.