What to do about anger?

I can’t bear to go through all the details of yesterday’s phone call to Mom. Suffice to say that it contained all the usual elements:

  • She was still asleep when I called in late morning.
  • She’d just woken up when I called again at noon.
  • She said back pain kept her up all night.
  • She didn’t know what day it is, and didn’t remember when I told her. Not the first time, not the 8th.
  • She was confused by the number of pills in her box, reporting 4 when there ought to have been 6 1/2. She said today’s compartment was empty, then said it did have pills in it, but not enough. She asked why Wednesday has no pills at all and what will she do then, not remembering that I’ll be back to refill the box. This exchange was repeated at least four times.

In a new twist, she took my Dad’s pills instead of her own, even though her pill box is bright purple, chosen specifically to be very distinct from Dad’s. At least that explains there only being 4 pills. (Fortunately Dad’s were only supplements; he keeps the important stuff separate.) Then she realized her error and took her own, of which there were 6 1/2, as I’d been saying all along (this is now 45 minutes into the call). She said she had been confused and in a rush because I was coming. I was never coming, and had never said I was coming, and it wouldn’t have been a reason to rush, in any case.

This is what dementia sounds like. Nothing she says can be trusted to have any consistent or correlative relationship to reality. When a normal person gets “confused,” they can be set straight. Oh, right, they’ll say. I was just confused. When a dementia patient is confused, talking them through it is like screwing yourself deeper and deeper into the marsh mud at low tide. Then the tide comes in.

All this happened while Robin and I were on the way from shopping to my friend Jolene’s house. We had the Corolla, because Aaron has “my” minivan up in New Hampshire for the weekend. I hate this reliable little car with the intensity of a thousand suns. It’s ugly, uncomfortable, cramped, loud, dirty (Aaron cares much less about keeping it clean than I do), and lacks Bluetooth. The minivan is not a luxury vehicle by any means, but neither is it any of those things, and Bluetooth makes phone calls so much safer and easier.

Robin and I had had an unsuccessful time shopping and were dashing back to pick up Jolene’s son, who’d be spending the afternoon at our house while she worked. I was cranky about the shopping trip. I was cranky about the car. I was cranky about having agreed to have a friend over. I had a headache and the beginnings of cramps. And then I had this hour-long conversation which made no fucking sense, and which, if I could have typed out a transcript, you would not even believe.

When we signed off, I screamed — screamed! — in frustration. Poor Robin. I told her that if I ever begin to do this kind of thing to her, that she should kill me. That, well, ok, obviously she could not be expected to kill me, but she should put me in a home and then move as far away as fucking possible and never look back. I will not allow her life to be sucked up by this kind of thing. I will not allow it. I will NOT.

It was at about that point that I realized my phone had not, in fact, hung up. I had thrown it into the passenger foot well when I said good-bye, but hadn’t disconnected. It is possible that my Dad–it was he on the phone at the end of the conversation–heard my whole poisonous, insane, horrible rant.

I understand that dementia is not my mother’s fault. I understand that being angry about it is normal (and so does Robin. She is a tremendous comfort). I try to keep anger about her illness from becoming anger at her for not being able to think and anger at my Dad for not being more managerial about it (he is blind, yes, but he can think, and he knows what fucking day it is, and he could help with the medicine thing).

It can feel like a lot of anger, which has never been my strong suit.

We got to Jolene’s house, and she asked how I was, and for once, I didn’t turn back the attention and say “fine, you?” I just laid it out. Empty. I’m running on empty. My parents have sucked me dry today and I have nothing left except feeling angry all the time. She listened, and she helped, and it was so good to have a friend in that moment that the stupid aggravations evaporated and the serious issues receded.

Having Josh over was fun. He and the girls played Clue, had a soccer ball punting contest in the backyard, played Wii, and watched Sherlock. Meanwhile I called my parents again, prepared to face their reaction to what they might have overheard earlier. They never mentioned it, and nothing in their demeanor suggested they heard any of it. Jolene said they had probably just put their phone right down after saying good-bye. If they heard anything at all it would only have been car noise from where my phone had lain on the floor. I’m going to assume, with relief, that she’s right.

After Jolene finished work, we all went out to dinner and talked about other things. My friends are terrific, and my girls are terrific, and I’m feeling better.

I’m still wondering what people do with their anger, though. I’m open to suggestions.

Medicinal Muddles

My mother’s memory troubles and general confusion have increased to the point where the possibility of her overdosing on her daily medicines is a constant worry.

Months ago, I wrote out a list of all her meds: brand name, generic name, dose, and purpose. She has handled this handwritten list so much that it is wearing thin. There are check marks penciled all over it. But this list was intended as a reference, not for checking off when pills were taken; a check mark on it is meaningless because it isn’t linked to any particular day.

I began to notice that she was needing refills of prescriptions about a week sooner than she should have run out. Then CVS said that insurance wouldn’t pay for a certain refill because it was too soon to fill, yet I couldn’t have her go without, so we paid full price for the anti-hallucination medicine.

Part of the problem is that she’s in such relentless back pain that she has a constant urge to take medicine to make the pain stop. There is no convincing her that hallucination medicine will not help her back pain.

Clearly Mom needed a way to remember whether she’s taken her pills. I tried to sell her on a pill organizer. She declined, saying the idea depressed her. I told her that I use one myself because the motions of taking medicine are so much the same, and the routine so mindless, that soon after I’ve done it, I can’t reliably say if I did it that day or if I’m remembering the day before. You don’t have to have dementia to forget this kind of thing! But no, she insisted, she wanted to stick with the pill bottles and a checklist.

So I devised several candidates for checklists, some from templates and some from scratch based on observations and guesses about what might work. She rejected all of them. Unchecked boxes were intimidating, and I think sharp black-on-white printouts made her nervous. I know that doesn’t make sense. But I started to notice that my computer-printed efforts stressed her out just to look at, no matter how simple and full of white space I made them, whereas she loves the handwritten page.

This makes me wonder if, in our later years, as our minds fail us, people all try to revert to the forms of communication we liked most during our lives. Handwriting on paper would definitely be the thing, in Mom’s case. It’s an unanswered question, because it’s only in the last few decades that these forms have changed as fast as they do now. But the rate of change increases all the time, so I wonder how it will play out, and if anyone is studying it in a gerontology program somewhere. I hope I’ll be able to keep up, but I picture myself pining for Excel spreadsheets long after there’s no longer any such thing, and I’m so fond of texting that I wonder if I’ll be able to adjust to whatever replaces it. I don’t know. If my giant paper calendar (color coded for each family member, natch) is any indication, I might have some trouble. (People used to see it and say “I like paper better, too.” Now they just say “oh, wow.”)

But I digress.

I now have Mom using a pill organizer with big compartments labeled S M T W TH F S. Every visit, I refill the compartments for the days ahead. At first, I’d look at the pill compartments and half of them would be empty and the other half filled with Advil. She would insist that she hadn’t taken any more pills than were in the box, and I would say but Mom, they’re gone, so where else did they go? I wanted to hire an aide, but she asked for “one more chance to get it right.”

We’ve compromised. I now call her every day to say it’s time to take the pills in that day’s compartment. She puts the phone down to get some water, and says OK, now what? and I tell her what compartment to open, and she counts the pills and describes them and asks is that right? and I say yes (with no small relief), and she takes them. Every day she asks me why she has no pills in the empty compartments, and I tell her it’s because she already took those. Every day she asks what happens when she runs out, and I tell her I will be back to refill the compartments.

This is working, at least temporarily. Someday she will have to have an aide come in every day to be sure she has taken her meds.

You may be wondering how Dad does. Turns out for managing medications, it’s more important to be able to think than to see, so he’s actually OK on this front. He keeps his meds in a kitchen drawer. One bottle has tape around the top, and one has a rubber band around the middle, and one is unaltered. He knows which is which and how much to take from each bottle, and I refill the bottles when he’s running low.

There are workarounds for blindness, as awful as it is. This slow, relentless failing of the mind, though? All we have are temporary patches to a system that is doomed to fall apart completely.