How to care for my aging mother?

I'm thinking of buying a duplex for her and me -- but I'd like a little buy-in from the relatives, too.

Published December 4, 2006 11:55AM (EST)

Dear Cary:

I need some large-hearted perspective and advice, and I think you are possibly the very best person to offer it. I will try to keep this simple. My dad died a little more than three years ago, and since then, my mother's physical and mental health has declined precipitously. She has an array of health problems including emphysema, heart disease and, most recently, Parkinson's. She also has never lived alone; she went straight from her parents' house to her husband's, and so living alone has taken an additional toll on her, I think. In the last year, her mental functioning has declined considerably. This is all to say that my mother really cannot take care of herself anymore, and that with her various diagnoses, she will only get worse.

I live about 1,500 miles away now, but until early last year, I had lived my entire life within a two-and-a-half-hour drive of her. I am single and childless, and so is my sister, who lives about halfway between my mom and me. There have been many discussions between the two of us and my mom's sister and brother about what to do about her. Neither my sister nor I have the means or the desire to move back to our hometown, but moving my mom to live with one of us means taking her far away from the people and places where she has spent her entire life. It is generally acknowledged that I am probably temperamentally better suited to taking her on, given that I have both a strong sense of duty toward my family and a strong desire to act with kindness whenever possible.

But let me be frank, and unkind. I cannot stand to be around my mother. She drives me crazy. She is needy. She is insistent. She falls into rabbit holes of obsession over the smallest things: how to work the remote on the DVD player, or locating some church bulletin from weeks ago in the stacks of old mail and old newspapers and old magazines and forgotten trash that cover every flat surface in her home.

And you know? I have seen plenty of people in the world who can respond to her with patience and kindness, who do not get frustrated or resentful, who are not cataloging every crazy thing she says or does and inwardly seething over it. I am not one of those people, though.

Nonetheless. This has to be done. She cannot live alone much longer. I am pretty happy in the town where I moved this summer. I really like my job; I am making good friends. After many years of vague dissatisfaction that has prodded me along into new jobs and new cities, without any strong desire to put down roots because I just couldn't tie myself down to any particular situation, I am ready to tie myself down. So lately I have been looking at houses, and trying to find a situation that would suit both my mother and me.

So here is my idea: a duplex. She could live on one side, and I could live on the other, and when she needed me, I would be there for her. I could keep an eye on her, make sure she gets to doctors appointments and takes her meds, make sure she eats, take her out to dinner and movies and see that she has some fun. But when she drives me crazy, I could shut the door and lock it and be alone. I like to be alone. My mom lived with me for about six weeks while my dad was dying in a big-city hospital, and I daily fantasized about killing myself or just getting on the freeway and driving away, away, away.

I mean, I know this like I know the sound of my own heartbeat. I cannot share a house with her. I have searched my heart, and I know two things: I cannot abandon her, and I have to have as much of my own life as possible in order to make it work.

I'm getting a lot of static. My mother says the only reason to move 1,500 miles from home is to be with me, which means sharing a house. My sister says that my mom isn't going to want to live in any of the small, shabby homes that I favor. My aunt says that my mom will require more supervision than that.

This isn't keeping it simple at all, is it? I guess I want to know two things from you, Cary. First of all, am I failing to meet my obligations as a child by refusing to share a home with my mom? Is there something wrong with me that I feel all this anger and resentment toward her? (I am plenty angry, I have to admit.) And, second of all, is there really something wrong with this plan that I'm not seeing, simply because I'm focused on my own needs instead of my mom's?

In my heart of hearts, I want to stay here, 1,500 miles away and alone. I like being somewhat adrift. I feel guilty about moving so far away just when my family has needed me most, but then I also think I have put in plenty of time looking after these people, and right now, I just want to be alone for a while. But I also feel that my own personal sense of ethics will not allow me not to take responsibility. It's not an option. So what is?

Dutiful Daughter

Dear Dutiful Daughter,

A duplex sounds like a pretty good idea to me.

Your mom may not like it, but that is to be expected. She is not likely to respond with pleasure to any of the family, social and medical interventions to come, because they are all in response to an unenviable truth: She is ill, and must be cared for. The provision of this care will not happen on her terms alone. When we can no longer manage our own affairs, we lose some of the power to choose how our affairs are managed by others.

Your relatives, too, may have their own ideas. Relatives often have their own ideas. These ideas may not be connected to observable reality, but they are nonetheless ideas. If your mother could only hold out a few more years until colonization of the moon begins, for instance, maybe that would be an option. She could live on the moon. That sounds pretty good, grandpa.

As for me, in dealing with matters of aging relatives, I have gradually and somewhat begrudgingly (being a bit of a perfectionist) accepted the sad, messy truth of it: This is about decline and eventual death. It is about once-competent people who held all the strength and knowledge of the world in their strong hands and agile minds slowly losing their grip and facing -- with whatever courage they can muster -- the terrifying prospect of their decline and eventual death. This is about saying a gradual goodbye.

And what happens is this: When we relatively young and competent actors in the world come upon the problem of how to care for our aging parents, we tend to think at first that it is a challenge like other challenges we have faced in the world, one that with our ingenuity and drive and discipline we can solve with award-winning panache and even a hint of originality. We plunge in, ready to solve!

But it turns out to be much harder than we thought. We are not working with a high-performance corporate work team to maximize plant efficiencies. We are not investigating a government scandal to assign blame and punish the guilty. We are dealing with a situation in which we are guaranteed to lose. Decline and death are not solvable problems. You cannot raise taxes and convene a commission to get to the bottom of it. There is no one at fault, no one to blame.

This is an activity in which winning is not an option. This is only about losing in a way that does as little damage as possible. So it becomes, in a sense, about style and character as much as about logistics and execution. We can lose ugly or we can lose with some grace. So we try to lose with some grace.

Your idea sounds like a way to lose with some grace. I applaud you.

As to the tactical question of how to lose this game with as little pain, ugliness, discord and insanity as possible, I would suggest that you consider three related but distinct challenges. One is the practical challenge: finding, buying and furnishing the duplex, getting your mother moved in, and establishing and maintaining the necessary services and routines. The second is the political challenge -- making the compromise palatable to your mother and to your other relatives, and keeping communications open so that they are available when necessary to render assistance. The third is how to take care of yourself, how to maintain your own peace of mind and feel OK about what you are doing.

I won't try to go into detail about how to accomplish each of these objectives. I'm just suggesting that approaching these as distinct challenges may help you avoid feeling overwhelmed.

As to selling your solution to the other relatives, I will say this: One reason they may not immediately respond with enthusiasm to your proposal is that they have been hoping, or even assuming, that the ideal solution would occur, in which some family member would move in with your mother and take care of her in her own house to the end of her days. So as a way of demonstrating that this is not going to happen, you might begin by asking if anyone is willing to do that. Having established that no one is willing to abandon their own lives to move in with your mother, you may find it easier to portray your solution as a welcome compromise.

May I now say a few words about how we got into this situation? I mean, isn't it odd that people have been growing old and dying as long as there have been humans on Earth and yet it seems to come upon us as an unexpected and undreamed-of burden?

We are a scattered people in cosmopolitan America! It is as though we had participated in a voluntary diaspora. Gifted with a great expanse of land, good roads and relatively cheap air transportation, we have scattered our families about the continent. When everyone is healthy it seems nothing to pick up and move 1,500 miles away, or 3,000 miles away, in pursuit of happiness. But we do so with a peculiar forgetfulness: That our parents would indeed age and become dependent, that they would need us, that we would be far away when that happened, passionately engaged in our own fascinating and no doubt worldly beneficial pursuits. And so it is that our wealth, our ease, our comfort, our power, our automobiles, our planes and our phones allow us the luxury of a profound obliviousness to the inevitable. And thus we encounter with astonishment this messy and uncharted assignment in life.

Caring for our aged is not something we prepare for, most of us, nor is it something about which we have a shared expertise, as we might have if we lived in a village, which, thank God, we do not (for this is not a nostalgic plea for us to go back to living in villages; it is just that certain kinds of knowledge, once upon a time, would have been in our bones, as would how to shoe a horse and gather hay). Instead, this question of how to care for the aged parents seems to arise, as it were, anew in every family, like a rare and unexpected disease. It seems to come upon us as an original and novel problem. Of course it is no such thing. It's just how we live these days.

OK, so there are exceptions. Some people are lucky and have geographically rooted families where such knowledge is reliably stored and transferred generation to generation. Yes indeed, and bully for them, aren't they cute. Others have ample resources to outsource the care. But for most of us, your situation is more like it. It is a vexing and painful problem for which I know of no great general solution.

You cannot do this perfectly. Nor is there any way to win this game. In spite of that, I think your idea is a good one, and I wish you luck.

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