[TIMELINE: December 2022]
After Thanksgiving, we remained watchful to see if Peggy experienced any more flashes of agitation or hallucinations. It was important for us to keep track, to make sure she was not in serious distress. Fortunately, there were no major incidents for a few weeks, which was a relief—although I was still stressed out by how much her condition had deteriorated recently.
Then, the situation went off the rails in an instant. On December 23, our beloved Uncle Nick passed away. He was a really cool, good-natured guy. He and our Aunt Betty (and their kids) had all been a big part of our lives since we were little, when our entire extended family would gather once a week at my grandparents’ house for spaghetti dinner. Even as adults, we all still got together every holiday until very recently. So while everybody else around me was looking forward to a merry Christmas, my family and I weren’t feeling merry at all.
And not only was I sad, I was livid, and I was disgusted. Here’s why: As soon as I heard the news, I texted my brother Les and warned him not to tell Peggy anything about it, but I was already too late. He texted back to say he had told her “immediately” after he found out!
Arrrggggg! What was wrong with him? This wasn’t news that Peggy ever needed to know.
Uncle Nick was in his 90s and had been living with Parkinson’s, which had become fairly severe. His health had been failing for a while, especially in the previous few months, so his death wasn’t a surprise. But I had intended to spare Peggy that grief if it actually happened. We were all very close with Uncle Nick and Aunt Betty, and I knew Peggy would be upset.
So I had warned Les again and again not to share exactly this kind of bad news with Peggy, especially after seeing her cognition take a hit the last time he had done so (in October). I texted him back again to warn, “Never bring this up with her ever again!” I implored him not to discuss funeral arrangements, flowers, anything about our uncle with Peggy, but he didn’t respond. Of course, why would he? He rarely put in any effort to get on the same page as me.
Throughout our sister’s illness, he more often than not refused to cooperate or coordinate with me, even though I was in charge of Peggy’s care. It was infuriating! Les never considered that I had legitimate, compassionate reasons for keeping our sister out of the loop. I saw up close what happened to Peggy the last time he dumped family business on her, and her intense emotional response seriously set her back. I didn’t want that to happen again.
So yeah, I was livid and disgusted with Les, and those emotions existed right alongside my grief. My gut reaction was to look into getting a no-contact order barring him from seeing Peggy altogether, though others talked me out of it. (Still, I reserved the right to do so in the future.) I don’t think he realized that his revelations could sabotage Peggy’s already fragile mental state even if he wasn’t being consciously malicious. I had been desperate to avoid that.
But Les’ choice took mine away, and I was left trying to help Peggy as best as I could in the aftermath. As I feared, she only had a limited ability to process Uncle Nick’s death. She kept checking with me, “Uncle Nick is dead, right?” She would ask that five times in the space of about 20 minutes. I hated seeing how hard it was for her to work through it. I hated seeing her struggle.
The knowledge also seemed to have derailed something in Peggy’s brain, and her inability to remember who was dead and who was alive got noticeably worse. A few days after she heard about Nick’s death, she told me that she knew our parents were dead, but she couldn’t remember any of the circumstances. In the same breath, she told me that our dad brought her some chocolate recently. Obviously he hadn’t (the chocolate in her room was provided by Michael), but it proved she didn’t have a solid hold on who was still with us and who wasn’t—and it meant we’d have to add another incident to Peggy’s hallucinations list.
To make matters worse, Aunt Betty had come down with Covid. She had been in the hospital with other maladies, including a hip replacement, when she caught the virus. She was expected to recover, but she still needed time to rest. So what do we tell Peggy? This time, I headed Les off at the pass. I talked to all our family members and enlisted their help to lean on Les and convince him not to reveal any of Aunt Betty’s health issues to Peggy. Even Aunt Betty herself got in on the action. She told him point blank, “Look, you can’t tell Peggy about this.”
And it worked! Les always listens to authority and my aunt was the authority. Once he got her “Orders from Headquarters,” Les did what he was told. He didn’t say anything more to Peggy.
That was one less thing to worry about, although it didn’t help as much as I’d hoped. Because of my aunt’s Covid and my uncle’s death, our family Christmas was, understandably, subdued. We decided on a Zoom party, so at least we could all see and talk to each other and spend time together, even if it was remote. Still—worst Christmas ever, for so many reasons.
Things didn’t get any better over the course of the holidays; it was clear that Peggy wasn’t rallying.
On New Year’s weekend, her friend Dodie called to tell me that Peggy was absolutely inconsolable. They had been talking on the phone a long while, and still Dodie couldn’t get Peggy out of her weepy conversational loop. She hoped maybe I could do better (and Peggy agreed), so Dodie tagged me in. Sure enough, when I reached her, Peggy seemed worse than she had been the day before. I spent more than 30 minutes assuring her that Uncle Nick had a long and happy life, and that Aunt Betty was doing well. Imagine 20 minutes of only this:
Peggy: And Aunt Betty? Is she okay?
Me: Yes, she’s doing really well.
Peggy: And Aunt Betty? She’s okay?
Me: She’s doing great.
Just variations of those same questions, over and over. I knew Peggy couldn’t remember from minute to minute what question she had just asked me, so on and on we went. Eventually I got her out of the loop, at least for that day. Then the staff spent more time with her, and it helped somewhat. I was so glad Peggy was in memory care, because she needed more caring help than I could give her alone. Even with a team—several family members and Michael and Dodie and her supplemental caregivers—it was still so overwhelming. I was underwater.
Deep down, I know that every caregiver experiences this. There will be a terrible moment and you come to realize that it was your lowest moment. This was that moment for me. Even when I think of all the horrible things yet to happen, it stands out in my mind as the lowest point for me, and for Peggy. For all of us. Because after Les told Peggy about Uncle Nick passing away, she just went off into her own different world. It triggered some sort of outsized, emotional dementia response in her, and in a lot of ways I don’t think she ever fully recovered from that.
Not long after this, she would tell me that she had seen our uncle in the dining room; she knew he had died, but yet she still hallucinated him. I later understood that this was how she was attempting to process his death, perhaps in one of the only ways still available to her.
Her perception was so off at this point that she could not engage with the sad news how she normally would. I know she missed our uncle as much as I did, but she could no longer clearly verbalize those feelings. She couldn’t form and ask questions like, “When is the funeral? What is Aunt Betty planning for the service?” And she struggled to answer questions, too.
It was clear she was no longer able to combine several thoughts into one sentence, or understand complicated sentences when spoken to her. It was just too much information for her to process, and then all we could see on her face was so much blankness. I saw a minor version of that very early on after her diagnosis, when Les was badgering her about what she was eating. She didn’t know how to react to him, and I could see the frustration on her face. This time around, her confused responses were definitely an echo of that earlier experience—the worst part, though, was that she couldn’t even tell me this. I had to read her very carefully to see what was going on.
And just seeing her face and how she was struggling was heartbreaking. It felt very bleak. That was absolutely the bleakest time for me, aside from her death. We were all trying to help her, and she didn’t have any way to help herself. She was drifting further and further away from us.