The Alzheimer's Antics

Grateful I can laugh about most of this

Friends, those of you who’ve been following me for a while know how thrilled I am that I was able to get my mother into an assisted living facility—and then prevent them from evicting her, which they attempted to do for several months, claiming her needs were too great for their level of care. So my relief that my mom has been allowed to stay in her tiny, assisted-living studio apartment is countered somewhat by my fear of asking for any extra assistance for fear they’ll try to evict her again.

Christmas: the last time my mom visited our home, she swore it was the last time (even though she loved the beautiful memory album my daughter made her).

But last week, when a virulent, highly contagious stomach bug was sweeping through the facility, I was super glad she was living in a place where there are helpers. This stomach bug is so awful, they’ve canceled all activities and aren’t allowing anyone to eat in the dining halls; the beleaguered staff members are having to deliver every meal individually.

My mother was one of the first to come down with this bug, calling me last Saturday to say she was very sick and needed to go to a hospital. Her PACE nurse, James, saw her and felt she was fine to stay in, but later that day she texted me that she was making a mess on herself because she was too weak to get out of bed, at which point an ambulance came for her. My mother was hugely relieved to be going to the hospital, though shocked I wouldn’t be joining her there. (Even before Alzheimer’s, my mother had zero maternal instincts; it wouldn’t occur to her to tell me to stay away to avoid getting myself sick.)

That evening, after the hospital staff had given her a bag of fluids, my mother felt so much better, she forgot she’d been sick and called me to say, “What am I doing in this place? They’re keeping me here against my will. Please come get me out of here.” When I explained why she was there, she had no recollection she’d been sick earlier in the day and repeated her demand that I come get her. “If you were in a hospital and wanted to be picked up and taken home, I’d come get you!” she said. “Why won’t you do the same for me?” I explained she needed another bag of fluids and bloodwork, but she argued there was nothing wrong with her. (She lately has paranoia that everyone is trying to get one over on her. For example, she insists the audiologist who told her she needs hearing aids is a liar, so she has refused to get them, insisting her hearing is fine, despite her neighbors complaining she keeps her television volume at a deafening level.)

Anyway, I stopped answering her calls. Her voicemails grew increasingly agitated: “I think you’re the one pulling all the strings and keeping me here!” she kept repeating. “Why are you doing this to me?” I couldn’t turn my phone off because I was waiting for a call back from her doctor, but my mother’s increasingly unhinged messages were hard to take. Sometimes I would answer and try to explain again why she was there, but soon after, she would call back asking again why I wouldn’t take her home.

Once back home, my mom kept calling to ask me what the hell was going on. Why wasn’t she allowed to go to the dining hall? When was I coming to get her? What was happening? Why was she being held prisoner? When would this end? She kept telling me she was depressed and lonely, with a clear expectation I could fix these issues. Her strangest questions centered on her fellow residents. Where do all these people live? she kept asking me. When I told her they all lived in the building like she did, she couldn’t believe it. Nooooo, she kept saying, that’s impossible!

The facility keeps sending us robocall messages telling us the disease is spreading, so they are continuing to cancel all activities. The cable went out one day this week, an emergency, so I spent half an hour on a video call trying to help my mom sign into Netflix on her laptop. She couldn’t figure out how to open a website or a tab or type in a url, something I feel sure she knew how to do the week before. When I tell her to look for a text I sent her, she asks where she would find that. Basically, she’s been extra confused, which I know is exacerbated by her being isolated in her room. I keep calling her providers to report that she’s confused; does she maybe need antibiotics for a UTI? (This is problematic, as she pretty much always tests positive for a UTI and just finished her last round of antibiotics, and the antibiotics upset her stomach.) Today when I asked her if she was wearing her oxygen, she said she had it on her face, but she didn’t know if the machine was on. The machine is big as a nightstand and very loud. I had her mute her TV to listen for the loud humming noise the machine makes, but she still couldn’t tell. (And I can’t ask the staff to check, because they aren’t allowed to have anything to do with her oxygen; my requesting they provide oxygen reminders is what led to their attempting to evict her.) Her phone died and she didn’t remember how to charge it so couldn’t call me for a day; when I got a companion to go plug it in, she was more confused than ever. Now her ringer is mysteriously off, so all my calls are going straight to voicemail.

Last night Renee and I planned to take my mother out to dinner. My mom was enthusiastic about the plan. But yesterday evening when I called to say we were on our way, my mom was indignant. “I’m not going out!” she said. She didn’t remember we’d spoken that morning. And, of course, she doesn’t understand why I won’t come see her until the plague has passed.

She has asked almost every day why she can’t come stay with—or better yet, move in with—me and my wife. The last time she was here, for Christmas, she couldn’t transfer to my toilet (I don’t know why, as she is able to transfer in her facility), and she announced she was never coming here again. But now, of course, she doesn’t remember saying that. She often cries that the only reason I won’t let her live with us is because Renee wants to keep me all to herself. (No, I tell her, it’s me. I won’t allow it; I value my peace and sanity too much. I will never, never let you live with me.) But the next time this comes up, she blames Renee anyway; I suppose it is easier to blame my wife than to believe her own daughter won’t let her move in.

I am in an Alzheimer’s caregiver support group where several members are reporting that their loved ones are forgetting their names or who they are. I don’t believe my mother will ever forget my name, as my mom’s mother and sister, my grandma and aunt, both had Alzheimer’s and always remembered my name and who I was. Instead, my challenge is weathering the constant guilt-tripping my mother remembers perfectly how to lay on me. As I said in a post the last time she attempted suicide, I have to keep in mind that I can never make her happy so musnt’t take it personally that she is always going to be disappointed in me. Wish me luck with that.

Here are some things I read or watched this week while all this was going on:

The Grammys last night, where I was thrilled that several artists spoke out against ICE. Billie Eilish was bleeped for yelling “Fuck Ice,” many performers wore ICE OUT buttons on their lapels, and Bad Bunny noted, “We are not savages. We are not animals. We are not aliens. We are Americans,” and later said hate cannot counter hate, only love can do that. To paraphrase, he said we won’t win by hating, only by loving. So we must be driven not by hatred of the other side, but by love for our families and neighbors. Here is a link to a translation of the songs he’ll be singing at the Superbowl, in case, like me, you are bothered by not being able to understand lyrics. (This is a problem for me in English, too; I wish lyrics ran on a screen behind all performers everywhere. Isn’t this just an accessibility issue that could be easily solved? Why isn’t it!?)

All the Light We Cannot See by Anthony Doerr. I had a bias against this novel for years because my son told me he didn’t love it. But I finally listened to the audiobook last week and must acknowledge that it’s a compelling, heart-gripping novel, and my son must have been having an off day when he gave it a low rating. My one concern is that the novel makes us sympathize with a Nazi soldier. We feel bad for him because he feels trapped into participating (and striving to excel) in Hitler’s Youth Camp. Once sent to the front lines, he feels he has no choice but to do as he’s told. Terrible things happen to those who resist. And yet, the novel makes clear that everyone does have a choice, even if it puts them in peril or costs them their lives. While I understood why Werner did all he did (and also why the author gave him the outcome he endured at the end of the novel), I cannot help but squirm at being asked to sympathize with a member of a brutalizing occupying force. Also, research I did after I read the novel showed me that tens of thousands of German women were raped by soldiers from Russia and the Allied forced after Germany was defeated. It’s tragic that women’s bodies are used like this as a tool of war (see Susan Brownmiller’s Against Our Will: Men, Women, and Rape), but I also couldn’t help but understand the vicious desire for vengeance being carried out by the man who recites the names of everyone he lost to Nazi violence while he commits his rape. So I suppose my main takeaway from this novel is that good and evil are not such starkly separate paths; we all contain some of each and must develop a moral compass to guide us when the path becomes murky.

This article, “Bad Sex,” from the Substack The Anti-Misogynist Club, which is excerpted from the book Faux Feminism: Why We Fall for White Feminism and How We Can Stop by Sarene Khader. The article details how much bad sex straight women are having: “A recent study of fifty-two thousand adults revealed that 95 percent of straight male participants revealed reaching orgasm at their last sexual encounter, compared to just 65 percent of women. A representative study in Canada found the ratio to be 86 to 62 percent. Slightly earlier studies report gaps more like 90 percent to 40 percent.” But the article reaches a surprising conclusion about what works to help women have better sex: democratic socialism. I recommend the article for its provocative reasoning.

This galvanizing post about how white supremacy has always resulted in dangerous encounters with law enforcement for people of color and ends with this paragraph, which is the main lesson I am drawing from what is happening with ICE these days: “If you’re gonna keep talking about how ‘not normal’ this whole thing is, at least have the decency to qualify it with ‘for white people.’ Because what you’re seeing now is not only normal for many of us, it’s been normal for every generation of our families. And your continued surprise virtually guarantees this [will stay] normal for our future generations, as well.” It’s a short, public post; I encourage you to read it.

Of course, I’ve also been consuming the continuing heartache in Minneapolis and the release of millions more Epstein files. I attended a stand-out this weekend in Northampton to encourage the Northampton DA to drop the charges against the Worcester councilwoman who was arrested for trying to prevent the kidnapping of one of her constituents. I called my representatives. I participated in the virtual Monday Morning Meditation offering from The Well in Ohio. And I was very sweetly taken out for brunch by one of my local subscribers! (What a treat!) What have you all been consuming lately—or doing for fun? Please tell me in the comments!