Contingency Plans

I heard a chuckle from Cindy as I pushed her in the datemobile (wheelchair) up the Haystack Mountain road. One might think this results from getting Cindy out in nature, but who knows. Cindy gives an occasional chuckle even in the bathroom, but most of the time she resides in a fog no matter where she is. Still, I have to believe getting outside enhances her life more than if she remained indoors, or even just sat on our porch.

We turned to the datemobile earlier than planned. The datemobile was a contingency for when the pedicab would not be suitable, such as when the weather turned cold, but the rear chain of the pedicab broke. I had a spare, but not the time to immediately replace the chain. Meanwhile, I notice Cindy’s chuckles better when she is in the datemobile. That alone convinces me that my contingency plan for the datemobile should now turn into permanent reality.

I’ve always made contingency plans in advance for possible life altering catastrophes. While in my twenties I resolved to dedicate the rest of my life to seeking beauty, should I ever be diagnosed with something like terminal cancer. I would now add embracing joy and kindness to seeking beauty, but otherwise that contingency plan remains in place.

A worse catastrophe for me would be losing my legs. I value living and aging well over living and aging long; Cindy joins me in this sentiment. When Cindy learned she had Alzheimer’s she handled her “death sentence” very well (likely to pass away in her fifties), but grieved over the certainty of continual cognitive decline. My contingency plan for losing my legs would be tapping into my creative energies as much as possible: researching, writing and composing. Not as satisfying as my contingency for terminal cancer, but it will have to do.

I also developed a contingency plan, even before marriage, for an offspring having Down’s. Most of us have observed how people with Down’s can be so loving, typically more so than people whose capabilities lead them to replace love with other things. I resolved I would tap into that natural love as much as possible and infuse it with as much dignity as possible if I had a learning disabled offspring.

As we come back down the Haystack Mountain road, my arms and nerves now doing the bulk of the work rather than my legs and lungs, I fancy that even for Cindy’s current condition I could develop a satisfactory contingency plan. I would need to add a week’s vacation occasionally, as I currently plan for December, but otherwise I could continue on with this life, content to hear my spouse giggle and/or smile brightly a couple times a day. Some spouses never see each other smile.

Certainly not many caregivers do, at least not according to what I read, or according to the questions agencies ask before sending a companion. There is the presumption of sundowning with Alzheimer’s patients, of becoming more irritable as their decline continues. Cindy’s fog increases as her decline continues, but not her irritability. I can plan for that.

Ah, but contingency plans for a spouse with dementia are fleeting. I borrow from my learning disabled contingency, making sure Cindy’s life is infused with love and dignity. I borrow from my amputee contingency, keeping a blog and composing a symphony throughout my relative confinement. Indeed, I’m much better off than an amputee; I still exercise abundantly. Yet contingency plans do not last for conditions that change as much as a spouse who has dementia.

When I finally got a chance to replace the chain on the pedicab I noticed additional repairs that should be made. There is no point to devoting much time to repairs at this stage of Cindy’s affliction. I am retiring the pedicab until after Cindy passes away; then I will give the pedicab a thorough tune-up, getting it ready for free rides to people in need of getting out. I will also barter for free meals (Hey! I’ve done all the cooking for many years now!).

Unfortunately, in between the time I first conceived of this post and now, I now need a contingency to my datemobile contingency. On Sunday Cindy could not stand up despite my support of her weight. Even our future “dancing” is in jeopardy with this recent decline. Occasionally Cindy will get worse but recover somewhat; I wait to see if that is the case now.

“Get ready for the honeymoon treatment!” I say as I pick Cindy up in my arms and carry her across the thresholds of rooms.

Carrying Cindy everywhere as part of a new contingency plan is not a problem. Four days later and I continue to pretend, for both our sake, that carrying her over thresholds is romantic. Bathroom duties were a temporary problem until I found that hooking her arm over my shoulders and neck kept her “standing” long enough for me to change her. Solving another problem actually provides a small measure of satisfaction; yet unless this is just a temporary setback we are destined to remain upstairs for most of the remainder of Cindy’s life. In the space of two short weeks my contingency plans shifted from the pedicab, to the datemobile, to a sedentary and sedate existence with  “romantic” interludes of carrying my bride over thresholds.

The first few times I carried Cindy she looked disturbed, as if her dignity suffered from this new degree of helplessness, but after a couple days I was able to get an occasional smile at our “role playing.” Still, I assume there will come a stage when nothing at all, neither jokes nor mysterious thoughts occurring in her head, will make her smile or chuckle again. Alas, for this I have no contingency plan.