Big Changes: Mom Edition

Over the last many months, I have been researching places for Mom to live after Dad died (with 12 years between them, it was a fair bet he’d predecease her). Several memory care assisted living places have been built nearby in recent years, and existing assisted living communities have added memory care to their offerings. It’s a growing need, for sure. Generally, these are not places where couples go to live together, so they weren’t viable considerations till Dad passed. Still, I collected brochures, gathered hints from people I know who work in the industry, and listened closely to other adult children tell their stories.

It is strange to me that we are so isolated in this process. Each family kind of has to invent the wheel for themselves. There is so much anxiety, and so little shared wisdom. The closest thing I can compare it to is applying to college, but in that, the anxiety comes from too much information about what other families are doing. There’s always the sense that everyone else is thinking of something you’ve forgotten, or that they’ve gotten better organized sooner, or something. With elder care, it’s anxiety borne of isolation. There’s no pathway to it that families take together or in parallel. It seems to me that as a society, we are kind of getting it wrong.

But I digress.

Some assisted living communities have memory care components; others are designed specifically and only for memory care. Some have all-inclusive pricing; others have tiered or itemized price lists. There are different settings, cultures, philosophies and programming at each. It is so much to consider, and the worst thing is to have to do it in a hurry; yet, many of us are in precisely that position. We need a place for a parent, stat. I did the best I could ahead of time and still feel it wasn’t enough.

Soon after Dad died, I made an appointment to tour the place I had liked best on paper and online. It was everything I could have hoped for, but expensive, so I needed time to be sure that my mother’s income and assets could make it work. I couldn’t commit right away and while I hated to let it go, I had to pass up an available room. A couple of weeks later Mom was feeling up to looking at it herself, so Robin and I brought her there for the day. I thought she would have mixed feelings, but she liked it, and even said we should leave a deposit! By this time I was confident I should not let the opportunity pass by.

So it came to be that just six weeks after my father’s death, Aaron and Robin and I moved my mother into a memory care assisted living facility just fifteen minutes’ drive from my house. She’s been so brave about giving up her familiar surroundings so soon after losing her husband of 52 years. It is early days yet but she seems to be adjusting fairly well… which is not to say she’s constantly delighted, but that she’s not going through anything that isn’t to be expected.

As for me, it is taking some getting used to not having to call her several times a day, and not living with the constant background anxiety that I might get an emergency phone call at any time of the night. There is very much to do at the house in Chatham that was my parents’, but that is all just stuff. The emotional changes are profound and will take some time to realize. It is a mix of grief, relief, sympathy, exultation, sadness, happiness… everything, just everything. Whatever the feeling of the moment, though, I know this was absolutely the right decision.

It’s a new chapter.

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.

Visiting Mom and Dad

I spend a few hours each week at my parents’ house, usually on Mondays. (For someone with a memory disorder, routine is key.) This week I went on Tuesday, because Mom and Dad had back-to-back dentist appointments on Monday. All I can say about that, folks, is FLOSS. FLOSS WHILE YOU’RE YOUNG. The more you “hate the dentist,” the more you should care about flossing. Go floss. I’ll wait.

OK? OK.

When I visit, I bring my parents lunch, pick up prescriptions, pay the bills, change light bulbs and batteries, and fix whatever random things needs fixing. (It’s a mystery to me why there is almost always at least one light bulb or battery that needs replacing. In decades of home ownership, I don’t think I’ve replaced as many bulbs and batteries as I have since I started doing it at my parents’ house.) And, of course, I hear what’s been going on with them, and help where I can.

Mom’s been having auditory hallucinations again — she is convinced that the next door neighbor’s son is watching her every move, and she hears him narrate everything she does. She says he killed his “gay lover” in the backyard, and now he’s going to kill her and my Dad. She says he watches her with stolen binoculars. In real life, this is a nice kid who just graduated from college and wants to be a priest. Mom has, on occasion, called the police to report his evil plans. The police check in with the neighbor. The neighbor calls me, understandably beside herself. I try to calm everyone down.

The hallucinations are so real to Mom that she does not feel safe on that side of the house. She relates them as if they are real: “he said,” not “I heard him say.” When I point out that he can’t see through walls, and there’s no way she would be able to hear him speak, she can perceive that it’s her brain doing this to her. But, it still does it to her. Her psychiatrist has instructed her to double her dose of the medicine that’s supposed to keep the hallucinations at bay.

In the meantime, she said, she came to the kitchen this morning and saw a skillet in the sink that had obviously been used to cook scrambled eggs. She said she had no memory of having cooked or eaten the eggs — the whole experience was a blank. “Well,” said Dad,”you should probably add that last night also included you drinking an entire bottle of Kendall Jackson Chardonnay and singing along to Burt Bacharach’s Best during the PBS on-air fundraiser.”

So, yeah. There’s that. I hadn’t the heart to tell them that based on the empty carton in the trash, the sell-by date on those eggs was in February. The damage, if there was any, had been done.

Most weeks, I end up bringing something home from my parents’ house. This has become kind of the fun part — you never know what it might be (especially if I’m making progress cleaning out the kitchen). For a long time, it was garden hose. My Dad had an astonishing amount of garden hose stored who knows where, which he parceled out to me in 25′ lengths over a period of about 6 months. Aaron and I were pleased at first, because our own hoses were wearing out, and Dad’s arrived just in time to save us buying new ones. As more hose appeared week after week after week, we went from delighted to baffled to mildly inconvenienced to actively trying to pawn it off on our lovely neighbors, who are enthusiastic gardeners who know other enthusiastic gardeners and seem to find homes for such things.

There have also been countless little cardboard boxes filled with tiny things about which Dad says, hopefully, “maybe Aaron can use these?” Fittings and connectors and adapters and washers and bearings and screws… the detritus of a lifetime’s puttering around a workbench. Aaron, fortunately, is just the guy to sort through all this stuff and put a lot of it to use. To say he’s handy is the understatement of the century. To say he’s frugal is also inadequate. Best, though, and what makes me proudest to be married to him, is that he understands. He makes a point to tell Dad when one of the little thingamajigs has served some critical function without which we would all have been lost for sure. This makes my Dad very, very happy. We are making those moments happen whenever we can.

Today’s haul included a Canon printer/scanner/fax machine, which Mom says was “broken.” As near as I can tell, whenever Mom’s computer stuff doesn’t work for any reason, her “computer guy” advises her to buy new stuff, and she does. All I ask is that she not give her computer guy the old stuff, because often there is nothing whatsoever wrong with it. I fully expect the Canon to be humming away productively in our home office as soon as I plug it in. That would be cool.

I also brought home open containers of All Bran cereal from the year 2000, instant coffee from 2009, and Quaker oats from 2003. It was Josie’s turn to take out the compost, and she was not thrilled.