Editor’s Note: Is anything ailing, torturing, or nagging at you? Are you beset by existential worries? Every Tuesday, James Parker tackles readers’ questions. Tell him about your lifelong or in-the-moment problems at [email protected].
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Dear James,
I’ve been married to my husband for 35 years. He is 88 and I’m 79. I was in love with him during our courtship. He showed interest in me, appeared to enjoy doing things with me, and was affectionate, kind, and communicative. But in the first year or two of our marriage, most of that dropped away.
When I told him that I didn’t feel loved, he didn’t seem to care. He apparently believed that once the courtship and honeymoon were over, he could start behaving like an entitled jerk (my words, not his). I’ve made attempts to leave, none of which panned out. During my third attempt, about 10 years ago, it became clear to me that my husband was in cognitive decline. I had suspected it for some time, but his behavior as we went over logistics confirmed that he no longer understood what was happening. Now, here I am—the sole caretaker for a husband with full-blown dementia.
It’s been awful. He rarely speaks to me. When I walk into the room, he doesn’t look up. I’m expected to listen to his news and conundrums, but he doesn’t have time for mine. I do the laundry and cooking and shopping, and he hasn’t said “thank you” in years. Sex is at zero. We have no family nearby. We’re living on our government pensions and can’t afford caretakers. My husband isn’t far enough along to qualify for long-term care—which we probably couldn’t afford anyway. Our mutual social contacts have drifted away. I have made some new women friends, and I still go out for a coffee now and then, but I can’t be gone for more than a few hours before my husband’s anxiety maxes out.
I’m not unkind enough to leave him now, but I am not kind enough to treat him with the love and concern he deserves in his confused state. How do I reconcile this? I want to go. I want him to go. That’s not likely to happen until one of us dies. Is there a way I can curate my feelings and attitude, so I don’t cringe when I read books about dementia care, and they keep using the term your loved one—which he has not been to me, nor I to him, for decades?
Dear Reader,
This one goes out to the carers—to the unpaid, at-home carers; the carers for husbands; the carers for wives; the carers for parents; the carers for disabled children or siblings, who on good days and bad, with hearts overflowing or through gritted teeth, get the job done. Who renew the routine, repeat the steps, climb back onto the spiral, whether it feels like a joyous practice or a scene from Samuel Beckett’s Endgame, or both.
I find myself reaching for religious language when I think about what you’re doing: You are consecrating yourself to the well-being of another—in some cases, or at some moments, a difficult, intractable, and unable-to-be-grateful other. You are making a liturgy out of the everyday.
In your case, is it possible for you to separate the husband who made you so miserable from the man who now relies on your care? I wonder. Maybe it isn’t. Maybe the symptoms of his cognitive decline are inextricable from what seemed to you to be his general self-absorption and thoughtlessness. But the situation is different now: He’s sick, and he needs you. And you have stepped up with strength and generosity, even if you can’t manufacture feelings that aren’t there. About those feelings, by the way, you should be experiencing no guilt whatsoever. These books about dementia care that you’ve been reading—every time you come across the words your loved one, try substituting your huge pain in the ass.
Meanwhile, is there anything you can do to take care of yourself? To lighten the burden? Think hard about this—think about those pockets of the day when you can get a break, and about how to make the most of that break. Maybe you sit in a diner and read a book (one definition of bliss, for me). Maybe you start playing Grand Theft Auto. Whatever irrigates the imagination and allows the soul to exhale. You’re the expert here. You know exactly how the system of caring for your husband runs, and you know what you need. And if you allow yourself a minute or two of unharried consideration, I guarantee that you’ll come up with some angles.
In admiration,
James
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