Alzheimer's disease · Assisted living · Caregiving · Financial stress

Stress, part 1 / July 17, 2006

I’ve been trying to describe to myself what causes me stress these days. If I can identify the factors, maybe I can manage some of them? [she wondered hopefully]. I don’t know when I began to think of stress as something like smog–diffuse and unavoidable. I guess it is, but nevertheless, it originates somewhere–either in situations or beliefs that can or cannot be modified.

I’m open to argument, but I think my biggest stressor is financial. If I knew that my mother was assured of the care she needs, right up until the end of her life, I might feel less stress. By “the care she needs” what do I mean? Sure, when the situation worsens beyond my ability to care for her, she can move to a nursing home where the staff is underpaid and for which I will have to sell her house. I will continue to have to monitor her care, while at the same time working AND putting her house on the market. She’s lived in this house for almost sixty years–it will take months to clean it out and fix it up to make it sellable.

I would be willling to continue caring for her if I could afford to hire in-home help, but I can’t because Medicare won’t cover it unless she meets certain conditions that the otherwise healthy Alzheimer patient doesn’t meet. In Rhode Island, a home healthcare aide is about $20 per hour. If I hired someone just to fill the hours I’m at work (plus travel time)–about 45 hours–it would cost about $900 per week out of pocket, over $3600 per month. And I would still be the only caregiver from 4 PM to 7 AM.

I’ve looked at several assisted living facilities. I’ve looked only at places with dementia units, and these require a certain minimum level of mobility on the part of the resident. If she were bed-ridden, the alternative would once again be the nursing home, and unless I could pay the cost out-of-pocket, I am once again at the mercy of Medicaid. The assisted living costs per month range from $3700 to $5000 (oh, there are more expensive options but I’d rather not know about them). My mother’s pension and Social Security income is less than $3000 per month. She would most likely qualify for the VA’s Aid & Attendence benefit because my father was an active-duty veteran, and I’m told that this might be somewhere around $800 per month.

So we would still have to sell the house. But I would rather sell the house for this–because assisted living is private-pay, the standards are higher. Not all nursing homes are bad, but the Medicaid system is no incentive to administrators to go the extra mile. At least once a year in Rhode Island we hear the story of someone who dies of neglect–in one case an entire nursing home was closed by the state. But in the end, the nursing home is the only option for most middle-class folks. There IS a new program called PACE in the state, but space is very limited.

So I’m facing both the dire prognosis of the disease as well as a grueling logistical transition–and one that is likely to be the final nail in my mother’s coffin (and possibly my own, too).

Is it odd that the first stressor is financial, and not the prospect of Stage 7 Alzheimer’s? I don’t know–of course the prospect of that level of debilitation is frightening, but if I had SOME control over my mother’s environment and care–which is what the financial means would give me–I know I would feel much, much better. I know that she is lucky to have a house to sell, to have that financial resource, but having to sell it under duress frightens me. Another option that I haven’t explored fully is the reverse mortgage (note to self: start looking into this)–but I’ve heard that one has to be extremely careful with these.

It seems silly at this point to get into the little daily routines that now also cause me stress, because the stress I’ve described here is as tight as a vise around my chest, all the time. It drives me to pray that my mother will not last long enough to get to that last stage, both for her sake and mine. How horrible is THAT wish?

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