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Wednesday, Nov 21, 2012 1:00 AM UTC

My mom has Alzheimer’s

My brother has been caring for her but I think it's now my turn

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Topics: Since You Asked, Family, Alzheimer's Disease, Mothers,

My mom has Alzheimer's (Credit: Zach Trenholm/Salon)

Dear Cary,

When my mom first was showing signs of dementia I was adamant that “something must be done” as I got married, started a new career, and quickly had two small children. Naturally, what I did was try to convince my mother to move into town, stop driving her car, and consider visiting a neurologist. My older brother, who lived much closer than my 1,500 plus miles, shrugged like it was no big deal. I should mention that both of us were still in our 30s, one of us (ahem, me) quite at the low end.

Fast-forward almost seven years and now my mother had moved in with my brother, only to move out and into assisted living in the same city where he resides. Not even in the same state where she lived prior to this upheaval, but very close and much more similar culturally, weather-wise, and a million other ways than my own state of California. Much. As my older brother goes through a divorce (no children) and continues on his path of creating, working, and great success, he has grown incredibly frustrated with the burden of caring for a parent with a very rare form of Alzheimer’s. While her facility does do a lot, she has always felt that family should do most of the caretaking and is constantly reaching out to my brother for help. For my part, I visit four times a year to help relieve the burden, and call often. In fact, my brother will tell me when he has a weekend he needs to focus and I’ll check in multiple times to make sure she does not disturb him. Still, it’s not even close to the job my brother has taken on at an early age.

Of course there is guilt. But there is also a determination to protect my own young family and fully commit to those other three people in my home. A gift I never received growing up. But at this point, when my brother gets irritated by every single small thing, I know he is done. Even if she were willing (which she told me once she was not, but hey, she has dementia), I cannot figure out if it’s a good idea to uproot my mother and move her closer to me and to her only grandchildren. My impulse is to do it so I can give her what my brother no longer can. At the same time, if I add caretaking my mother to my already overflowing plate, I worry so much about my children and my husband and my ability to care for them. Also, let’s be honest, I worry about my sanity.

What do I do? And how do I balance what’s best for me, with what’s best for my family living in my own home, and what’s best for the woman who raised me and gave me everything she had available? I mean, really.

Thank you for any insight.

Watching My Mom Forget Who She Is

Dear Watching My Mom Forget,

This is really sad and this is hard. I suggest you take what is the most manageable and equitable course. If that means moving your mother then move her. There is no perfect solution. So choose the one that is most workable and practical and fair.

This is unlike any other life challenge you have faced. If you are a competent and successful person then you are used to challenges for which there are solutions, in which victory is possible. This is different. There may be victorious moments but its nature is not the nature of a fair battle that might go either way, or a difficult problem that will eventually yield to intense study. This is decline.

Since you are in your 30s, you are attuned to the making of a family, the creating of new life, the upside of things. This is the downside, the ugly, untended, shady back of the hill where no one wants to live, where the sun doesn’t shine and nothing grows and you get an eerie feeling that makes you want to leave. That’s what it’ll be like sometimes if your experience is anything like mine. You love your mother and you want to do the right thing but no amount of preparation can remove the grim strangeness of it, and no matter how perfectly you execute your plan the result is not victory but loss.

You will get through it and there will be some moments of satisfaction and you may at times take some pleasure in seeing what great depths of resilience you have. But even that is a different kind of pleasure. It’s not a joyful look-at-me pleasure. It’s a quiet, well-I-got-through-that pleasure.

And you will get through it. I feel confident of that. You will be taxed to your limit and at times you may feel you are failing but you will get through this and in so doing you will confront certain limits that are not circumstantial and practical but something else, something psychological and spiritual.

Luckily there are resources to call upon and people to ask for help, wonderful people who’ve dedicated their lives to dealing with what happens when people begin to fall apart. You may have some wonderful experiences with them; you may even fall in love with a few, in the way that we fall in love with strangers who rescue us.

It’s going to be tough on you and your family, and all the while, the real drama will be hers: the subjective experience of memory falling away like a house coming to pieces around her. But you will get through it.

Have some hot cocoa. Pray.

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Cary Tennis

Cary Tennis writes Salon's advice column, leads writing workshops and creative getaways, and also publishes books and ebooks writes an occasional newsletter and tweets as @carytennis.

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