Auntie SparkNotes: Dementia Has Turned My Grandmother Mean

Dear Auntie,

My grandmother has dementia (a version of Alzheimers) and she lives with my family and I. We provide full time care for her but sometimes it seems like I’m the one who needs care simply because I can’t mentally handle the things she says and does. She tells me I’m yelling at her when I’m just talking, she talks about how she’s “going to die today” when she’s completely healthy aside from her mind, and she’s just really mean half of the time. People tell me to not take what she says to heart and know that it’s just her disease, but it still really hurts and I try not to take it personally… but I can’t help it. How can I accept that it’s just her disease and not the loving beautiful woman I grew to know before it?

I’m so sorry for what you’re going through, Sparkler. And it’s heartbreaking just to type this, but it’s nevertheless true: When it comes to accepting your grandmother’s new behavior, you’ll first have to accept that your old, beloved grandmother is basically gone.

Because in so many senses of the word, she is—and if you haven’t let yourself grieve that loss, you should. The woman who lives with you right now is fundamentally different from the one you knew and loved, even if appearances suggest otherwise. You’ve been robbed of a wonderful person, a wonderful relationship. It’s normal and natural to feel sad about that, or angry, or deeply hurt.

With that said, you need to keep in mind that your grandmother feels robbed, too—of her independence, her dignity, her life as she knew it, and her sense of place and self. It’s incredibly common for dementia patients to say and do incredibly hurtful things, either as a defense mechanism to cope with their fear and confusion, or because they simply can’t tell the difference anymore between a caring behavior and a threatening one. For a person who’s lost the ability to reason and/or understand their condition (which is the case for most dementia patients after a certain point), the world can be a truly terrifying place where people are constantly asking you questions, invading your space, barging into the bathroom to help you pee or bathe even when you don’t want them to, pushing you into and out of rooms that you may or may not recognize as familiar places, and getting frustrated with you when you can’t keep up (and you can’t, no matter how hard you try.) It’s confusing and undignified and invasive and isolating and awful—and none of it makes any sense, because the parts of your brain that you use to communicate, and to understand what’s being communicated to you, have gone permanently dark.

Under the circumstances, it’s not surprising that people lash out.

Which is not to say that it doesn’t still hurt, because of course it does. But I get the sense, sweet pea, that you’ve been dutifully telling yourself, “It’s just the disease talking,” without pausing to let the full and devastating meaning of those words really sink in. If you had, you would understand that taking your grandmother’s cruelty personally is as pointless as taking it personally when a baby cries.

So, before you do anything else, I’d like you to take a little time to just confront that—with a box of tissues handy, because there’s no getting around the heartbreak of it. It’s an awful thing, to realize that someone you love is disappearing from the inside while they’re still sitting right in front of you. But on the other side of that realization is… well, not peace, exactly, but patience. The patience to say, “Okay, I’ll speak more quietly,” even when you know you weren’t yelling to begin with; the patience to respond to her comments about dying with a cheerful, “Gee, I hope not!” and a subject change; the patience to take a deep breath when she says something really cutting and tell her, “That was very cruel and it hurt my feelings. Excuse me, I’m going to step outside for a minute.”

And after that, you might even find that you have the patience to step back in and say, “I understand that you are very unhappy right now. Can you tell me what’s bothering you, and we’ll try to fix it?”

For the record, that won’t always work; sometimes you’ll just get another verbal smackdown, and sometimes there will be nothing to do but say “I’m sorry you feel that way,” turn on the TV, and make vague mm-hmm noises in response to Grandma’s vitriol until she falls asleep. (And if for some reason it’s falling to you alone to hang out with Grandma every time she’s at her worst, this would be a good time to suggest to the rest of your family that the responsibility be spread around a little so that nobody gets burned out.) But when you treat her outbursts not as personal attacks, but as expressions of anger/discomfort/unhappiness that you just happen to be witness to, you may be able to figure out what’s causing them, which means you may be able to make some adjustments to make them happen less.

And the rest of the time, you’ll cope however you can, in whatever way is available. That might mean escaping at the end of the day into a dumb movie or an exciting book; it might mean lifting something heavy at the gym, or legging out a mile run before bedtime; it might even mean finding a scrap of black humor in the whole awful situation, and engaging in an informal competition with your family members to see who was the recipient of the most ghastly comment from Grandma this week. (Families have bonded over stranger things.) Honestly, if it helps you get by and doesn’t hurt anyone, it’s fair game. The better you cope at the end of the day, the more patience you’ll have to be kind to your grandmother in these last years of her life—and maybe to even make a few new, good memories before she’s gone.

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