[TIMELINE: February–April 2022]
During the next six weeks, we finally enjoyed a bit of a lull in the chaos of Dementia World. A big reason for this was that the sertraline seemed to be helping Peggy a lot.
Previously, she had said she was so afraid that she “couldn’t do anything in her room.” For a long time, I had interpreted that to mean she was in a typical Alzheimer’s haze, which made all life difficult—and when her anxiety and stress levels started spiking, I worried that those hazy episodes were increasing. But we got to the bottom of it, and then sertraline to the rescue!
Peggy still had moments of confusion and concern, which resulted in some wild conversations, like this exchange that we had towards the end of February:
Peggy: I’m really worried.
Me: What are you worried about?
Peggy: Michael. When he’s here, where will he go to the bathroom?
Me: He’ll use the bathroom.
Peggy: There aren’t any here.
Me: I’ll check in with memory care staff and make sure there’s a place for him.
Peggy: Okay…
Needless to say, there are bathrooms scattered throughout the building, and every bedroom in memory care had a bathroom, too. (So, of course, I didn’t need to check with the staff.)
I just never knew what to expect in conversations with my sister, but I had to roll with it regardless. If you’ve ever done theater improvisation, you know that you have to respond to your scene partner in some appropriate way, but in the moment you have no idea what they’re going to do. Dementia is just like that. Overall, though, Peggy’s mood was pretty upbeat around this time, and I so much enjoyed talking with her in those moments. Sometimes she’d even tell me about a crush she had on one of the male caregivers (something I’ve learned happens a lot).
Good for her! I was glad my sister had something fun to fixate on and chat about, especially since I knew nothing would come of the crush because everyone at her facility is a professional.
But I wanted to plan for what was coming next, so at my March session with my therapist Katy, I asked her what I should be doing during this plateau. She told me that I should keep our bases covered, keep Peggy’s visitors coming, keep talking to her on the phone, and to keep visiting her myself as much as possible. She also suggested that I try to get some rest while I could—which is always easier said than done. Then she warned me: Team Peggy also should be preparing for the day when Peggy wouldn’t recognize any of us, even family. Even me.
I knew she was right, though in the moment my gut reaction was, “Man, that is not something I want to think about.” Katy also said it was a good time for us to start leaning more on support groups, like AlzConnected, as we braced for a new phase for Peggy. It was all good advice. Shortly after this, in March, I next saw Peggy—and she looked good, although her demeanor seemed subtly different. She was still generally in an upbeat mood, just not as “with it” somehow.
She was also becoming a little twitchy, and it made holding onto physical objects difficult. Peggy’s friend Michael had noticed the twitchiness, too. He told me, “I clean her glasses first thing every time I go visit. Sometimes she can put them on herself, but often I just do it. She frequently has trouble holding them, and generally will grab them by the lenses, even when I hand them to her with the ‘arms’ open for her to grab, so it defeats the cleaning!”
Something that was a big help to Peggy during this time was performing karaoke in the memory care lounge. It didn’t matter that she wasn’t singing on stage with her band like she used to—it was still a strong connection to her sense of self. She loved that!
The staff sent me a few karaoke photos one day, and I’m so glad they did. One picture in particular still stands out to me—Peggy’s got a microphone in her hand, she’s smiling, and she looks like she’s in control. She looked like her old self when she was singing. It was really nice to catch a glimpse of my pre-dementia sister once again, even if briefly.
With Peggy in a good place emotionally, my partner Jon and I decided it was as good a time as ever to clean out her storage unit. I’ll admit: Ethically, it felt gross to me to touch my sister’s stuff. At one time in her life, it was all really important to her! But she was beyond caring about most of it now, so we knew the clean-out had to be done. We put together an action plan and dove in.
Sure enough, it was just as daunting a task as I had feared, First of all, Peggy had boxes of taxes stored in there—all the way back to the early 1990s! Why do people save decades worth of tax returns? Maybe it’s genetic. When we cleared out my parents’ house a few years earlier, we found tax files dating back to the early 1960s, and my grandparents and my aunt hoarded tax files and papers, too. Whoever ends up taking care of my estate will not have this same problem! Jon and I don’t have decades of tax returns stashed away, and we never will.
Among all the useless files and junk and lots of old furniture, though, we also found a number of treasures that Peggy had been saving, like the PA system she had used sometimes with her various bands, her vinyl records, and some costuming pieces. We gave the audio equipment to my musician friend Dana—who put it back into service at Burning Man not long after—along with a few of the vinyl albums, like all of the Van Halen in Peggy’s stash.
To our nephew went the Steely Dan, and then the rest of my sister’s vinyl collection came home with us, despite the fact that it was loaded with “yacht rock.” We would eventually find those albums a good home elsewhere, but in the meantime, Jon and I had ourselves a good laugh about it. I had no idea Peggy loved yacht rock so much! She and I were so close in age, yet her 1970s and 1980s looked really different from mine. I grew up goth with the music collection to prove it, while Peggy’s records included only one 45 that even remotely fit my favorite genre: “The Love Cats” by The Cure. What a great song! (Jon and I still laugh about it to this day.)
Jon and I diligently pressed on, and by the end of April we had the storage unit all cleared out and the floor swept clean. Also during this same time period, I consolidated Peggy’s bank accounts, closed her safe deposit box, and did her taxes for the year. I definitely felt like I had taken full advantage of the downtime! I was all up to date on the bureaucracy of Peggy’s life. Not only that, I spent as much time at the gym as possible that month to just wear myself out with all the exercise, and we got up to date with our Covid booster vaccinations.
April was a good month. I was so thankful for it. And Peggy herself continued to do well—she was in good humor most of the time, and Michael even said she looked like his old friend again. And you know what? She really did look good. We Facetimed with Peggy and her friend Angelique a few times that month, and that was a mood booster for all of us, especially Peggy.
April was also notable in that we found out Peggy’s recent crush was actually on one of the female caregivers in memory care. Peggy was convinced Sonia was a man. (She was not.) I thought to myself: Well, this is going to be tricky. I was flummoxed as to what to do. I wasn’t sure how to approach Peggy with news that her crush was a woman, and I couldn’t really lie or fiblet my way out of the situation. So I probed Peggy a little in conversation to see if I could detect any fluidity in her sexual orientation. Could that be a possibility? No, she still seemed pretty straight. So, what to do? I was worried about a possible meltdown because of the letdown it could be for her.
So I went to my forum mates on AlzConnected for suggestions, and thankfully I got some great advice. Seriously, if you’re in any kind of similar situation in caring for someone with dementia like I was for my sister, this community is the place you want to be.
Here’s a smattering of the best replies I got from the forum:
• I would bet the staff is already aware of this and that it’s not a unique occurrence. They may be able to give you advice about how to handle or redirect.
• Why do you need to “correct” Peggy? Is there harm in letting her be wrong about this? You could always go along, just listening and framing your comments without the use of gender.
• Our LOs (loved ones) have so little joy in life. If she has a crush on someone she thinks is a man, I don’t see any harm in just letting it go.
It was all such good advice, so I opted to follow it and not try to intervene. Then, one afternoon shortly after this, I was on a call with Peggy and out of the blue she told me that her “friend” (aka her crush) was female! Apparently, Michael and Peggy had already discussed how Sonia was a great caregiver—and a woman. I’m not sure what went down in the time between when Peggy and I last spoke, or if Sonia had talked to Peggy directly or not. But I thought to myself: “There ya go. The situation I was so worried about dealing with just resolved itself.”
As with a lot of issues that come up for Alzheimer’s caregivers, I doubt I’ll ever know what truly happened. But it was nice for once that things all worked out without a fuss.