To Say Or Not To Say

I spent part of Sunday with my arms plunged deep into my mother-in-law’s washing machine, because my fingers were small enough to dig underneath the agitator to fish out about a quarter of a can’s worth of cat food.

Why was it in the washing machine? Oh, grasshoppers – ours is not to question these things. We live our lives straddling the line between “real life” and “Alzheimer’s life,” where the washing machine becomes the trash can, a can opener becomes part of an art installation, where used paper towels are to be lovingly folded and saved but an antique menorah goes into the trash.

Most days, we can navigate the randomness of living with someone with Alzheimer’s. We truly have to be in “One Day At A Time” mode around here. We try very hard not to say, “Well, next year she’ll be someplace where she can be looked after, and we’ll be able to do this, and this,” because the fact is we don’t know that. There are no guarantees in this life. It could be another year, it could be another three years. So we keep things, as much as we are able to, in the day.

I feel like all I talk about is Alzheimer’s, these days. I can’t help it; it’s kind of my LIFE right now. And I’m not even shouldering a quarter of what Kevin is bearing. I have known from the get-go that this is a progressive, degenerative, and fatal disease. 3 years ago, when she couldn’t drive anymore but could still go to the grocery store with us, I remember thinking, “This is kind of a pain, but I need to roll with this right now, because it’s going to get worse. Much worse.”

You have no idea what any traumatic situation is truly like until you’re living it.

I vent about it here because I can. Increasingly, I’m finding it more and more difficult to talk to people who aren’t going through something similar, simply because they don’t understand, and I find myself trying to explain what cannot be explained in any kind of succinct way.

I’ve always hated those xojane “How Not To Be A Dick To Someone Who ______” pieces. Mainly because of the title. People, by and large, aren’t dicks, or aren’t meaning to be dicks. But sometimes we say the wrong things without realizing it. I know that before I became a caregiver, I said most of what I’m listing below as things NOT to say, and I cringe when I think about it now. So, take this in the spirit in which it’s being offered. Here’s what not to say to a caregiver:

Why can’t you just put her in a nursing home?

We get this all the time. The short answer? It’s not that simple.

The longer answer? Medicaid will not pay for a nursing home/facility unless we can prove that it’s “medically necessary.” If we were to put her somewhere now, and pay for it entirely out-of-pocket, we would burn through her savings in pretty short order, and be right back where we started.

She is still able to more or less dress herself. If you hand her a toothbrush with toothpaste on it, she will brush her teeth. She cannot prepare meals for herself, but she mostly remembers how to use a knife and a fork when we make her something to eat. She is not incontinent (yet). She makes her own bed. Because of all this, she is not “medically eligible.” Putting cat food in the washing machine is a nuisance, but it does not warrant a nursing home.

So, please, stop asking this. It makes us feel bad, and even more stressed out, and like we’re not doing a good enough job.

You look/sound tired.

Thanks! We are tired. We are both crazily, brain-wastedly exhausted, and that’s even with the help we’re currently getting from family and aides.

We wake up, we make her breakfast, we “do the rounds” of her apartment to make sure there is nothing in the washing machine that shouldn’t be in there (like, you know, cat food), or anything else that could be potentially be a hazard (and at this point in her illness, that can be just about everything that isn’t nailed down). Then we work all day, come home, follow up on anything that needs to happen (based on the notes her aides leave), make her dinner, get her to take her pills, get her into her pajamas, and THEN think about dinner for ourselves. And I’m not even getting into the morass of paperwork that still needs to be finished, to make her eligible for this service or that service, and to get her financial ducks in a row.

So, yes, I’m sure I look/sound tired. Could you maybe compliment me on my hair instead?

You really should be doing this/that/the other thing at this point.

Believe me when I say that we KNOW what we should be doing, but because of financial and time constraints, we’re not there yet. Please don’t make us feel guilty about what is falling between the cracks.

Can’t you just put on some old movies/music and let her sit quietly?

Perhaps these things work with other dementia patients. It doesn’t work with my mother-in-law. In her well life she couldn’t sit still, and always had to be doing something. This is now exacerbated with her illness. Pre-existing anxiety issues plus Alzheimer’s is a very trying combination. She can’t sit for much longer than 15 minutes in front of a movie, and while she likes to listen to music, it doesn’t keep her from wanting to pull everything out of the china cabinet to “rearrange” it. We’ve tried, and are continuing to try, all kinds of things. Music, games, puzzles, repetitive activities. Some of them work. A lot of them don’t. Alzheimer’s symptoms vary wildly from person to person, and affect personalities differently. What works for your aunt/grandmother/co-worker’s mother may not work for Mom.

God/The Universe/The Flying Spaghetti Monster doesn’t give us more than we can handle.

I understand that this is supposed to make me feel better, but it really doesn’t. It’s very hard to look at it that way. Could it be worse? Of course it could. But when you’re in the thick of it, you don’t really have the energy to muster perspective.

You should get out more.

Do you have kids? If you do, then you understand how difficult this is. If you don’t – I’ll explain.  Of course we should get out more. But this entails securing someone to sit with Mom, because she cannot be left alone. I mean – at all. Not even for a couple of hours. It’s also not really possible to bring her with us, a lot of the time. She gets very anxious in unfamiliar settings, even if those settings were places she used to go.

Frequently, any kind of outing involves our checking weeks, and sometimes months, in advance to see if a family member can stay with her or have her stay over, or if we can get one of her aides to agree to a weekend or overnight shift. If it’s something I want to do, a lot of times I have to take one for the team, and turn the invitation down. Sometimes one of us can go do something, while the other stays home with Mom. But right now, there is no such thing as a spontaneous outing, or even a planned outing in some cases, for the both of us. We appreciate being invited to your party/show/event, but please understand if we can’t make it.

Let me know what I can do to help.

This is the toughest one to address without sounding like a total jerk. This offer always comes from a genuine, sincere place. I know this. But it puts one more thing on our ever-growing list of things to do: Call mortgage company again, call lawyer again, clean cat food out of the washing machine again, tell friend/family member what they can do to help. We’re not prepared to say right off the bat: “Great! Can you do this, or this?” We’re frequently not in a place where we even know what we need, and to be honest – we’re often afraid to ask.

——————-

Oy. I really don’t want to sound ungrateful. I know that people want to say the right thing. Here are some things that we do like to hear:

You’re doing a great job.

Even if we sometimes don’t believe it ourselves, we love hearing this. Really. So much of the time we are second-guessing our decisions, or feeling shitty because we feel like we’re so far behind on what needs to get done.

I’d like to bring over a meal/sit with Mom for a few hours so you can go out/do some research on facilities and services for you.

Not too long ago, a chef friend of ours left us a big bag of food on our front porch. Stuff that could be frozen and heated up on those nights when we were too tired to figure out dinner on our own. It was such an amazing and generous thing to do, and not something that we would have thought of on our own.

A simple offer to do something, no matter how insignificant you might think it is, means the world to caregivers.

Do you want to talk about it?

A lot of times, we would just love to unload on someone who’ll just listen without judgment or platitudes. Even if I sound rant-y and horrible. You don’t have to understand what we’re going through to just be an ear.

I really have no idea what this is like for you, but here’s Banthapug.

Banthapug makes everything better, even if it’s only for a couple of minutes.

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