Sacrifices
By M on Tuesday 2 January 2007, 00:47 - Journal - Permalink
First let me say that I am sure mum and dad would be delighted if I were to move in with them - until I started trying to take control that is, but that is another question. The question is what I think of the idea of moving in.Michael, there must be a reason why the obvious solution of moving in with your parents hasn't emerged in your writing. Please forgive me if my suggestion is indelicate but have you considered this? And what would you consider to be an event that would trigger your parents' need for 24-hour home care? It is quite as possible to mistakenly eat a box of poison as it is to mistakenly eat a box of cat food. My father once tried to eat a tennis ball - same shape as an apple, same fit in his hand, same motion from hand to mouth. He had no concept of the rightness or wrongness of his actions.
The reason that I have not considered moving in with my parents is that I am simply not prepared to make such a sacrifice. I cannot speak for my three siblings, but I suspect they have the same reasons.
If necessary, I could invent all kinds of justifications for my position, but the real reason is pure self-interest. I would hate to live in the same house as my parents, I have had experience of it. I'll explain why I would hate it, simply for the purposes of explanation rather than justification or self-defence.
- The house itself. It is everything I dislike: cluttered, kitsch, obstacle-laden, gloomy and high-maintenance.
- Dad's incessant chatter. I like solitude, quiet, peace and order. I do not even play music at home. Dad's repetition drives me mad after only an hour or two; it interrupts my thoughts until I am as confused as he is. I am infuriated by the trivial subject matter: the catechisms over whether to have a cup of tea, the long debates about whether it is hot or cold, the daily conference about when to turn on the lights and draw the curtains (and the insistence that these must be done simultaneously).
- The constant company. Again, my time alone is often the best part of my day. Having both parents follow me from room to room would bring me to breaking point very quickly.
- The early nights and early mornings. Having to tiptoe around the house for up to six hours each night, and having dad come into my room only three or four hours after I've gone to bed to ask whether I am awake - I can do without that kind of misalignment.
- The chaos. In my own place I know exactly where my toothbrush, my keys, my cutlery and my other belongings are. I don't like it when they get moved. I often leave projects (such as the cataloguing of the family photographs) spread out over a table for weeks. I could not continue to work this way at my parents' place.
- The lack of space. I would have to put the great part of my furniture, my books, perhaps even my clothes, into storage.
- The workload. I would have to assume responsibility for each meal, for the washing and cleaning. I do not want to do any more housework than I already do.
- The noise and temperature. I have at times compared my parents' place to hell. They have the TV turned up LOUD so that they can hear it, they then shout at each other simply to be heard over it. The heater is often roaring at full bore. Under these circumstances I cannot even think. At my place conditions are comparatively paradisical: I have trained myself to use neither heaters nor air conditioning. I simply adjust the ventilation and my clothing to the time of year. The advantages of this seem to be that I no longer catch colds in winter nor suffer insect infestations in summer (as their populations die out during the colder months).
- The daily travel. I often work at home but need to make regular appearances at my office. I walk there from my place. From my parents' place it is a 90-minute drive during rush-hour.
- Social taboos. I cannot see how I could continue my current social life under the inquisitive, conservative, and off-putting noses of my parents.
The second part of the question is what change of circumstances might induce me to change my mind. Here I answer that I would never consider it, no matter how deranged mum and dad's lives had become. There will come a point in the transition from healthy person to unpredictable demented vegetable at which mum and dad (either one or both) will no longer be safe alone under any circumstances. At that point I will move to have them placed in a nursing home, pending whatever Greg and Rachel are prepared to do.
Until that point, we are riding our luck. Without putting too fine a point on it, we are playing the probabilities that mum and dad will be OK, that the autonomy they enjoy is sufficient to counterweight the extra risks they are running. We chose this rather than strap them down in a cotton-wool cocoon from which they are not allowed to move without a minder. Our approach is either a calculated assessment that the solution can often be worse than the problem, or a form of fatalism that is unwelcome in some cultures, notably America and increasingly Australia, and possibly others I do not know about, but is otherwise fairly normal. If our lack of total supervision somehow hastens our parents' deaths, I will not feel guilty. My goal is not to make them live as long as possible, no matter what. It is to - and here the logic admittedly gets a little fuzzy - optimise happiness, both theirs and ours. I think so far we are doing well enough. Of course, anything can change...
The email went on to say:
Yes, it is taken in that spirit, and I hope my response is taken as an honest description of a not uncaring attitude. I read the abovementioned article. It is not a pretty picture.A word of warning, there is no pace, rhyme or reason to Alzheimer's. The decline can be fast, slow and everything in between. But it always gets more challenging, less predictable and very, very time consuming. It is also unbelievably expensive.
The New York Times had an article in Saturday's paper - "Elder-Care Costs Deplete Savings of a Generation" by Jane Gross. I highly recommend reading it. There are millions of families in the same boat. ... And I hope my suggestion is taken it the spirit in which it was offered - with an open heart.

Comments
Well Mike, you have opened 2007 with a perfect statement of the approach I have chosen to take with my parents. (As an only child, I have to call it "my" decision, not "ours." )
You said:
"Until that point, we are riding our luck. Without putting too fine a point on it, we are playing the probabilities that mum and dad will be OK, that the autonomy they enjoy is sufficient to counterweight the extra risks they are running. We chose this rather than strap them down in a cotton-wool cocoon from which they are not allowed to move without a minder. Our approach is either a calculated assessment that the solution can often be worse than the problem, or a form of fatalism that is unwelcome in some cultures, notably America and increasingly Australia, and possibly others I do not know about, but is otherwise fairly normal. If our lack of total supervision somehow hastens our parents' deaths, I will not feel guilty. My goal is not to make them live as long as possible, no matter what. It is to - and here the logic admittedly gets a little fuzzy - optimise happiness, both theirs and ours. I think so far we are doing well enough. Of course, anything can change..."
end quote
Over and over I am confronted by people who tell me I should "put" my parents somewhere where they will be 100% safe 100% of the time (that is, some kind of care facility). Apart from the complexity (and expense) of finding a facility that would provide the correct kind of care for each of them within the context of constant changes, I actually feel that in facilitating their continued life in their own home (which they built with their own hands), I am giving them a gift.
Risk is an essential part of it. Autonomy is an essential part of it. But that's life itself. No they are not 100% safe from every possible bad luck at every possible moment. But they are still living the life they created for themselves and which they value above everything.
And yes, it does mean that a decision has been made which could possibly mean that death may come sooner than it would in that cotton-wool cocoon. But to my mind it also means that life itself, lived with some true autonomy, will go on longer than it would in that cocoon. Partly I have made the decision this way because I know what I would want, and I know who they have been all their lives. All I have to do is remember that they love and treasure their life in their own place every bit as much as I love my own life in mine.
Thanks for saying it so well, as usual.
Mike, thanks for this clear discussion of a problem with no clear solution.
I have to say, after having read the above apologia of yours, Mike, I feel even more strongly than before that I am doing the right thing by my mother, considering everyone's circumstances, and you are doing the right thing by your parents, considering everyone's circumstances.
Interesting that you should mention fatalism in connection with this. We are social beings and, one way or another, our deaths close a social contract.
I honestly don't know if I'd be here with my mother (or if my mother would still be here) if my father were still alive or I did not have the kind of life long relationship with my mother that I have. If I felt it was untenable for me to do this for my parents, under other circumstances, I would assume it would also be untenable for them. Aid their death? Depends on your perspective, I think.
Hi Mike--I'm catching up on my favorite blogs and had to put my two cents in here. My mother has been in assisted living for nearly a month now, and I'm wondering if her transition would have been a little easier had I not lived with her for two years. I feel that I raised her expectations and then pulled the rug out from under her once it got hard for me. Maybe I'll feel differently with time, but right now I'm wondering if I ever should have lived with her, especially at a time when her own judgment was declining. If I'd made the commitment to stay with her until the very end (like Gail) this would have been a good decision, but I just didn't think that far into the future.
I agree with you wholeheartedly on the autonomy vs. safety issue. And I also feel very strongly that the caregivers' lives must be taken into consideration when planning longterm care, instead of blindly expecting that we sacrifice everything to maintain our parents' lifestyle. You can't be expected to do that, and, besides, I don't think such a sacrifice would be doing any favors for your parents. It's not a level playing field--they can no longer grasp the relationship with you. They will become needier and you'll be psychological strapped. It's tough to watch them decline but your presence in their house will not stop or even slow the decline, where Alzheimer's is concerned.
And it's not even a question of time or effort because it's very clear from your blog that you and your family probably spend more time and energy caring for them now than you would if one of you lived with them! We can't control this disease and so we do our best--we make our decisions based on our own values, that's all we can do. So carry on--you're doing a wonderful job and your blog is a great help to the rest of us who are fighting the same battle.