[TIMELINE: November 2021–January 2022]
After being in San Jose for a few days to help move Peggy into memory care—and then our trip back there a few weeks later to help her adjust a bit better—it felt good to return home again and finally de-stress for a minute. But my respite was limited, because talking to my sister every day on the phone made me realize she was becoming confused about timing.
She also began conflating her memories of actual events with imaginary ones. Sometimes Peggy thought I had been to visit her when I had not. She thought her friend Michael had visited when he had not. She thought her roommate Patricia had moved out, but she had not!
Peggy mentioned all this in a phone call to her friend Angelique, who filled me in later. Peggy also said, apparently, that I told her she had Alzheimer’s, and she wondered if I told Angelique that, too? Peggy was scandalized that I would say such a thing! I guessed this was her anosognosia rearing its head, which was to be expected at this stage and which wasn’t new for me to witness—but it was really distressing for Angelique. It was like a punch in the nose for her, I think.
This was the first time that Angelique and I really compared notes on our recent experiences with Peggy. Even before this stage of my sister’s illness, I had already adopted the mindset of “trust, but verify” whenever she and I talked but, as it turned out, Angelique hadn’t realized she needed to do that. She was really upset to discover how many things Peggy told her about that hadn’t actually happened. Peggy had become a so-called “unreliable narrator” like you always come across in novels, and that was really difficult for Angelique to accept.
Angelique and Peggy had been friends since kindergarten, so it was not a casual relationship. They were family to each other, and when your family member is acting in this strange way, it causes a lot of distress. It’s not that Peggy was lying—my ever-honest sister was always going to tell the truth—it’s just that her cognition had deteriorated so much that she didn’t know what was the truth anymore. And Angelique only interacted with Peggy over the phone, so this quirk hadn’t presented itself to her in an obvious way before. She was shocked to learn it.
We compared notes a lot more frequently after that day. We also discussed the progression of my sister’s Alzheimer’s often because it took Angelique a long while to process everything that had changed in Peggy. I understood why she was so unsettled, because I had experienced all those same emotions myself over the previous couple of years. But since I saw my sister in person a lot, I was already adapted to this new reality for quite a few months at this point.
If Peggy told me the sky was purple, I’d have to just roll with that idea immediately. I’d have to say, “Oh, really? Is it lavender? Is it royal?” so that she wouldn’t have a meltdown. Over the phone, one might have the luxury of quickly changing the subject or otherwise redirecting her, but when I was in the actual room with Peggy during a visit and we were looking out the window together, it was a lot more challenging. I had to be ready to venture wherever she took the conversation.
Then there was the ongoing saga with Patricia, the roommate that Peggy said she hated. From what I understood, Patricia had fairly advanced vascular dementia. I’m terrible with people’s ages, but she looked to be in her mid-to-late 70s. I never knew my sister to hate anyone, so it really stood out to me that she used that word when describing Patricia.
I think part of the problem was that Patricia was always hovering on Peggy’s side of their room. It was no mystery as to why: the big picture window looking out at the trees was on that side. I’m sure Patricia didn’t realize that she was encroaching on Peggy’s space, and if we pointed it out to her, she’d forget about it as soon as the words were out of our mouths. So all we could do was redirect her in the moment. Patricia would also move things around on Peggy’s side of the room. There was no malice, just maybe curiosity? Maybe a shiny object caught her eye? We would put things back where they belonged and not say anything for fear of upsetting Peggy.
Near Thanksgiving, Peggy’s long-time veterinarian came by to visit her. There was a 20+ year relationship shared between them, as she had cared for many, many, many of Peggy’s cats over the years. I had met her a number of times before when I took both Chloe and Jezebel in for check-ups, and I could see why my sister liked her so much. She’s a great person, and she so obviously cares about all of the animals in her care (and their humans).
I know her visits meant a lot to my sister, so I was happy to find out that she came to see Peggy from time to time. It’s not easy visiting a patient with mid-to-late stage dementia, particularly in a memory care facility; you just never know what you’re going to get.
Sadly, this particular visit actually left Peggy depressed that she couldn’t have Chloe live with her anymore. Both her friend Michael and I supplied her with compassionate fabrications about Chloe being boarded at the vet’s office for various reasons, but there were still so many tears.
Thankfully, Jon and I were able to practice some self-care the week before Christmas by watching a livestream of Corvus Corax, that neo-medieval band we love. They were performing their annual holiday show in Berlin again, now set up outdoors due to Covid. I love those guys! It was great to see another show, even if it was virtual. It didn’t matter to me, because during that stream I was still fully engaged with the bagpipes and the drums, and transported miles away from Dementia World. Life was very different for me when I had to travel to Dementia World, when I was forced to enter that place. More often than not, it was totally unsettling, like being Alice in Wonderland.
So the show was a sweet, albeit brief, reprieve. Then it was back on the road for us, in a manner of speaking, to visit Peggy for the holidays. We actually decided that, this time, we were going to fly to San Jose a few days before Christmas instead of driving down. I invited a couple of our cousins who lived nearby to come visit as well, and we figured we’d throw a little party in memory care that would be manageable for Peggy. But you know what they say about best laid plans….
We got through the line at security and boarded our flight, which was scheduled for an on-time departure, and then—nothing happened, for a long time. Eventually the airline had us all deplane. Then we waited some more at the gate. Finally they canceled the flight outright. So much for the little Christmas party we tried to plan! At least we were able to rebook our flight, so we did make it down to hang out with Peggy that week. And she was in a great mood!
In fact, Peggy continued to be in good spirits that whole last week of the year. I felt a big part of it was that we had prioritized visiting her for the holidays and spending time with her, and the staff had been looking out for her. They always did a good job, and Peggy felt cared for.
Peggy continued to obsess over her friend Tahoe, though. I wanted to call Tahoe and check in on her, but I don’t know her very well, and I didn’t have a phone number for her.
Otherwise, the time between Christmas and the New Year was fairly uneventful, which was a relief. Everyone on Team Peggy had caught a much-needed holiday break.