Tuesday, January 8, 2013


We're in the deep midwinter now. Icy winds actually are making moan around the house today, just as in the carol. A bright unforgiving winter day, reminding me that my favorite thing about southern California is that right after Christmas, it's spring. I am not a fan of winter.

But writing about the seasons does help me work my way into these essays. Like the ancient Japanese haiku writers, who wrote about the weather almost every day. Weather places us, gives us an orientation toward our surroundings. When, as a caregiver, you are constantly inhabiting someone else's head and your own at the same time, it's good to have something like a snowstorm to remind you of the world outside.

My mother just visited. One of her few comments on my care for Pat was, "It's just so constant." Yes, it is constant. I am constantly responsible for making not only medical choices, but ALL the choices that keep my husband in health and safety and some degree of happiness. Like a single parent with no co-parent to consult, I must choose well for the person, in this case my spouse, who depends utterly on my wisdom for his life. And I'm also supposed to make good choices for my own.

Scary enough. Then add exhaustion and meager resources that have to cover a range of expenses including paid caregiving so that I get a few hours away each week. Mix in government agency red tape and un-returned phone calls to potential nursing homes and dementia resources. Beat thoroughly a myriad of Medicaid and insurance forms that seem to have directions written in a language I never learned, ordinary house cleaning, bill-paying, car repairs and grocery shopping. Stir together with job hunting, resume crafting and online applications and cover letters. Then fold in constant (at least every ten minutes) unintelligible yet urgent questions from my husband, and there it is: A recipe for profound confusion and indecision.

The problem is, I'm indecisive to begin with. I spend inordinate chunks of time weighing alternatives, writing checklists, and examining pros and cons. In the end, I almost always choose what my gut told me at the start would be the way to go. But the process is an attempt to mollify my fear. Fear that I will choose the wrong path, that it will lead to some unalterable error that will negatively impact not just my life, but Pat's as well.

This has, in fact, happened more than once, though almost always, the negative was at least balanced by positive experiences and life lessons. But to have to choose for someone else, especially to make choices that will have health or happiness, even life or death consequences, is paralyzing. My self-doubt is like the predator transfixing the gaze of the prey. My response, like any good prey, is to hold perfectly still. It's called procrastination. But it, too, has consequences.

Right now, the salient question is whether or not to put Pat back in the hospital for a few weeks and then transfer him directly to a nursing home in California. On the surface, it seems straight-forward. I am getting worn down; he is increasingly agitated. Answer: commit him for three weeks and get a nursing home lined up meantime. Simple. Only it's not simple. And for once, it's not just me making it complicated to forestall choosing.

First, getting him to the UNM psychiatric hospital from Santa Fe is a complex process, as I've written before. Then there are major issues involved in transferring someone from a hospital in one state to a nursing home in another. Second, I'll have to pack up the house, sell items, clean, paint and have repairs done so that it can be rented--and find a rental agency to manage it. Third, there's the actual drive (flying is out of the question--they wouldn't let him on the plane) from here to there. How do I manage a fairly robust man with severe dementia for two days in a car?

And of course, all of this is contingent on me finding a job. That actually has to come first, because where I find work determines where Pat will end up in long-term care. I have a dream, which I'm happy to share, that I'll somehow find a wonderful couple who can be live-in caregivers, and a great place with a separate living space for them. And a terrific job that can support home care--my current understanding is that MediCal won't separate assets for anything but institutional care.

But logistics aside, the greater issue is Pat's health and happiness, and mine. I've seen how he fares in hospitals and at least one nursing home. Granted the latter was the barrel's bottom, but there is something about Pat that can't thrive in institutional settings.

Other dementia caregivers must have this experience--I hope they know something that I don't. So many resources talk about mom just settling right in after a couple of weeks of pouting, or dad loving the attention from attractive young CNAs. And I did see people at Casa Real who seemed fairly content--they had friends, the nursing assistants spoiled them with attention, they enjoyed bingo and paper crafts. They were all older women.

Pat is still who he is, somewhere deep inside. That confined passive world doesn't suit him. He's like a wild free creature who wastes away when caged. So how can I do this to him? How can I put him in a an institution where he will wither? On the other hand, how can I go on with caregivers dropping out like tired pitchers, Pat getting more erratic and too many things like bill paying and income generation left undone?

The answer to both questions seems to be, "You can't."

So what is the third option? What is the divine surprise? I don't know. I hope it shows up very soon. Hope is the relevant word here. The belief that all comes right in the end. As Julian Norwich said, "All will be well, and all manner of thing will be well." Indecision wears down hope. And I need a full measure.

Outside our warm home, the wind has died down, the stars are sparkling. It is very cold this winter night.


1 comment:

  1. Do you go to an Alzheimer's Association support group? They have lots of answers for us caregivers. My husband was diagnoised four years ago and is still in stage one. I am concerned when he is in a later stage what the options will be.


I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!