[TIMELINE: July–August 2023]
My sister’s usual challenges continued into July, but there were a few really bright spots, for which I was grateful. To start with, Dodie was able to come visit Peggy in person! Mid-month, Dodie’s daughter drove her up from southern California for a short stay. It was amazing for Peggy—and for Dodie as well. Truly, I was so happy for both of them. And what a great daughter Dodie has!
Later, Dodie told me that she thought Peggy looked good, but she couldn’t figure out why she was having such extreme outbursts—repeatedly yelling at The Lady, who didn’t exist. Dodie knew all about Peggy’s recurring hallucination, but this was the first time she was present in the room to see it distressing Peggy so much. I told Dodie it was almost certainly just the progression of Peggy’s disease. We discussed it a bit further, but ultimately we just weren’t sure what to do to change the situation, aside from me asking Peggy’s doctor to tweak her medications yet again.
Still, in spite of The Lady’s ongoing presence, it felt like Peggy’s decline was a fairly gentle slide downward at this point. In terms of conversation, all of us on Team Peggy were limited to asking her yes/no questions, as she didn’t have a lot of recall anymore. It was just too difficult for her to follow us speaking. But she was still eating well, and had a series of good days ahead of her.
In fact, for the first time in a long time, I felt that the rest of the month turned out…pretty good, all things considered. Of course, word salad still fell out of Peggy’s mouth for sure, and she had a few angry outbursts from time to time, a couple of bathroom mishaps, and a UTI that turned out not to be a UTI. But in the grand scheme of things, nothing really terrible happened.
I think it helped that music did wonders for Peggy’s mood, and she had a lot of new music to enjoy, thanks to my mad CD-burning skills and a group effort by her friends Michael, Dodie, and Tahoe. Each of them gave me lists of Peggy’s favorite songs, and from those I would make new mixed CDs that she could play in her room. I also added in whatever songs I thought might be missing from those lists, so we could listen to some of our favorites together when I visited. It was amazing how well music calmed her down and made her so happy—particularly Fleetwood Mac.
The band was very well represented in Peggy’s vast vinyl record collection, along with Stevie Nicks’ solo work. But there were so, so many other bands. It was just a little over a year since my partner Jon and I had brought home most of Peggy’s collection after clearing out her storage space, and we had not done much with it since, aside from converting some of it to CD for her.
Fortunately, my friend Dana had come up and stayed with us for a couple of days that month. We went through Peggy’s entire collection, and she picked out a few albums to take off our hands—for example, all of the Van Halen. I doubted they would go over too well in memory care, plus there was so much more to choose from for Peggy. And together, we found quite a few more songs (and full albums) we thought Peggy would enjoy, and I added them my CD-burning list.
And I had to laugh once more at the huge percentage of “yacht rock” that Peggy had collected over the years. We were only two years apart in age, but aside from us both loving New Wave, our musical tastes strongly diverged. All I can say is that Peggy’s 1970s and 1980s looked quite different than my ’70s and ’80s! I remember how much she loved bands like Miami Sound Machine and The Motels…but I don’t think I could name a Motels song if my life depended on it!
Dana’s visit was a nice break for me, and I kept on pursuing self-care as much as I could because I knew it was necessary to keep me strong for my sister. So staying active, listening to music, writing, gaming, and socializing all fit the bill. I was working out three days a week, which felt great. Jon and I went a few times to the Mercury, that members-only goth club in Seattle; we liked it there! I also attended Death Guild every week, albeit virtually since I couldn’t be in San Francisco. We played a lot of Terraforming Mars, which is now my second favorite board game (after Arkham Horror, based on the novels of H. P. Lovecraft). And I saw friends whenever I could.
But my self-care wasn’t always effective. Despite my best efforts, my headspace was still bad. In spite of respite, I had reached my capacity—again. My gut feeling sometimes was, “I just want to be done.” No, I wasn’t ever, ever going to quit looking after Peggy but, honestly, I was just weary. My energy was quickly spent, and any fun thing I did had to fit within my caregiving constraints; there was no spontaneity. My therapist Katy had told me, “Live your best life.” But I found this advice near impossible to follow. “Ha!” I thought to myself. “Maybe someday.”
The beginning of August wasn’t as good for my sister as July had been. Late one afternoon I had an upsetting phone call with Peggy where half of the conversation was just her worrying aloud that someone was “taking” me or that they wanted to hit me. I couldn’t think of anything in our past that would trigger that kind of a reaction. It wasn’t late at night yet, though the call did occur after dinner, so I wondered if perhaps sundowning was the problem. But who could really be sure?
I spent the other half of the my conversation with Peggy trying my best to amuse her and get her to laugh. I wasn’t always as good at distraction when she was upset as her best friend Michael, but I usually had success when reminiscing with her about characters from Dark Shadows, the old 1960s vampire/werewolf/witch soap opera we used to watch together after school. Peggy even had Dark Shadows books and soundtrack albums! Michael and Dodie also used to watch that show—actually, I think all kids of our era watched that show—so they were also able to amuse Peggy with discussions about it. It was always a good fallback when everything else had failed.
I was also successful a couple of times with talking about Strange Paradise, an obscure Dark Shadows knock-off series from Canada—which, to be honest, I only brought up with Peggy because I was so tired from the phone call that I was trying to amuse myself as well. The acting on Strange Paradise was not the best, and neither were the plot lines. Totally ridiculous, right? It was bad enough that it made Dark Shadows look like high art. Still, being children, we did watch it!
To my amazement, Peggy remembered Strange Paradise, and I had her laughing for a good ten minutes about it. I only could recall a couple of characters from that show, mainly the housekeeper of the big old mansion (which was a total copy of the Collinwood estate on Dark Shadows). The housekeeper’s name was Raxl, pronounced like axle—don’t ask me how I remembered that. Raxl was enough of an over-the-top character that I believe that Peggy really did remember her, too, and we laughed and laughed. So I called that part of the phone call a win.
However, all throughout our conversation, The Lady kept appearing to Peggy and upsetting her. I tried to banish her for Peggy, with only limited success. Sigh. It was a difficult hour.
When I talked to Michael about it, he confirmed that he was having the same sort of experiences whenever he spoke to Peggy. He reiterated that he had no idea where The Lady came from, or why Peggy believed the things she did. He also told me that Peggy worried about me all the time, concerned I had either been “taken” or injured. He always assured her that I was fine and the only reason I wasn’t there at that moment was because I was working, not because I was in danger.
Sometimes Michael’s explanations would calm Peggy, and sometimes not at all. The truth of the matter was that The Lady had become a fixture, and she tormented Peggy daily. We had no idea why or how this hallucination originated for her. All Michael could do in person was try to convince Peggy that The Lady was gone or had moved away, and that Peggy was safe with him.