[TIMELINE: June 2022]
At the beginning of June, Covid finally reared its ugly head: Peggy tested positive. Ugh. The day after the facility staff told me this, they also admitted that 11 out of the 19 residents in memory care had also tested positive. Yikes! I wasn’t happy to hear it, but not all that surprised, either. None of the residents wore masks! Of course most of them thought they were wearing masks, and my sister was no different. She swore up and down that she always had her mask on, but when I’d see her in person or Facetimed with her? No mask in sight.
As visitors, we had always worn masks inside the facility, as it was still strongly encouraged (although not required) at that point. But I get it—it’s really, really hard to get a memory care resident to wear a mask, especially if they think they’re already wearing one.
Aside from masking, California still had some fairly stringent Covid rules during 2022, and those were a floor not a ceiling, so facilities could enact even stronger protocols. And Peggy’s facility did when it came to visitors; during that outbreak, no one could go inside at all. So I postponed my planned June visit a few weeks. By then, I was visiting my sister for about a week out of each month, so of course she was disappointed when plans changed.
Peggy didn’t really understand why she had to isolate while she was sick. Still, we thought it easier to not even tell her she had Covid because her symptoms were really mild. The facility’s RN reassured me that all of her vitals were good, so my sister thought she just had a bad cold. At least I was able to Facetime her that month! And, once she was back to testing negative, Michael was allowed to come visit her, and they would sit together outside on a bench by the side entrance. We appreciated that accommodation for Peggy’s sake, since no visitors were allowed back in the building yet, and the memory care garden could only be accessed from inside.
I was happy to hear from staff and from Peggy that her physical symptoms had eased up relatively quickly and that she was feeling better. However, I could tell (even over the phone) that the infection had worsened her cognition. Her downhill slide seemed to have picked up speed, and she was noticeably more confused: She thought our brother Les had come by to visit her, but he hadn’t. And she thought she still lived in our parents’ house with him instead of in memory care.
A few days after those conversations, Peggy told me that she was happy in memory care—that she liked it there, and that she’d been happy at that facility for years! So that, at least, was a bright spot to ease some of my increasing worry. My sister was kind of amazing that way. In spite of her Alzheimer’s, she could still make lemonade out of lemons—a Peggy hallmark.
But then, the very next day the staff told me they found Peggy sitting on the floor of her bedroom in the middle of the night. Best we could tell was that she deliberately sat or knelt down on the floor for some reason (perhaps she was looking for something she thought she had lost?) and then wasn’t able to get back to her feet. The on-duty nurse said that it didn’t look like she fell, and I knew they’d tell me if that had happened. So what was she doing on the floor? It would remain yet another unsolved Alzheimer’s mystery.
A week later, Peggy’s roommate Patricia passed away. Even after all of the troubles she had with her, Peggy was upset. She told me that she felt badly about her death, and said she never wished for anything bad to happen to Patricia. I assured her, “Of course you didn’t!”
When I next saw my therapist Katy, in mid-June, we discussed my emotional burden, which was a heavy lift at that time. It was “all dementia, all the time” and I could never get away from it. It felt like it was the job from hell, and that I was stuck in it for all eternity. There were so many issues I was responsible for dealing with, from the legal to the emotional! But I assured Katy that I’d never abandon Peggy. She suggested that I continue to talk to Peggy as often as I could, but try to pick a day during the week on which to handle all the bureaucracy for her, so that it wouldn’t become overwhelming. It seemed like good advice, so I decided to give it a try.
Previously, I tried to accomplish a little bit of Peggy-related stuff each day instead of all at once, but designating a specific day meant I didn’t have to worry so much throughout the week. I liked this new approach and I recommend it if you are a caregiver yourself. It worked out well—at least until we got further down the road of Peggy’s illness, when it was easier said than done. By then, something would always come up and we never knew what it was going to be.
The rest of June was really a mixed bag. There were periods of time when Peggy had a series of great days in a row. When her cognition was up and her mood was sunny. When she sounded like her pre-Covid self. And then there were the rest of the days….
I finally made it down for a visit at the end of the month—and often that week, Peggy’s behavior was maddening. I struggled to understand it. For example, she was obsessed with trying to clean. Why did she suddenly get fixated on picking up leaves that were on the ground? Who knew? I’m not even sure she knew. She’d also fixate on picking up specks of dust off of the floor. Again, I had no idea why. Maybe she thought she was actually cleaning? To be honest, I was kind of surprised she could even see any dust. Her vision was terrible! But she’d actually get down and pick up specks, so I guess she could see well enough.
Michael had witnessed the same oddities during his own recent visits. He told me that Peggy wanted to pick up and throw away everything she saw on the floor or the ground. Every time they went out into the memory care garden together, she would immediately start gathering leaves to throw away. No amount of discussion would dissuade her from this task, because she kept noticing things that she wanted to pick up so the area would be clean. At least he thought her mood was generally good, but man, there was so much confusion (for her and for us).
And Peggy would continue to get stuck in a loop during our conversations. On the phone with me, I’d listen as she’d cycle through a few topics only to start over again on the same topics just as soon as she’d finished. This would go on for as long as I let her speak. The only way out was to completely redirect her, like asking, “Hey Peggy, did you get to do karaoke today?”
Her most common loops at this time were: “I want a cat,” “I want my own place again,” and “I want to drive.” At times, I’d also hear a smattering of “How did I get Alzheimer’s?” and “Where is Tahoe living?” and “Does Tahoe still have Alzheimer’s?” Peggy had forgotten that her old friend and former bandmate Tahoe was now living in West Virginia. I still didn’t have a phone number for her, though, so I had no idea what to tell Peggy about her current situation.
Then Peggy looped around again to cats. She said Michael told her she probably could not have a cat living with her in memory care. I gently told her that he was probably right. She responded with, “I know,” so at some deep level she understood this was true. I took comfort in the fact that, at least some of the time, my sister could still be grounded in reality.