[TIMELINE: November–December 2022]
By November, Peggy was facing a new set of challenges. One of the memory care staff called to tell me that Peggy had begun seeing people that weren’t there. I was worried but not surprised, since I knew she had reached the stage of her disease where hallucinations were a possibility.
Here’s how it went down the first time: Peggy had walked up to the main entrance door of memory care and told staff that she saw a man, but she knew he wasn’t real. However, he looked real—enough that she turned around and ran away down the hall!
Now, running is highly discouraged in memory care, as are sudden movements of any kind. Which is not unreasonable. There’s a bunch of residents who aren’t steady on their feet, who don’t always know what they are seeing, who aren’t always in this reality. If one person took off running, they could endanger (or at least agitate) three other vulnerable people.
But I have to be honest. When I heard what had happened, my first thought was, “Huh, good for her. She can still run!” Because I didn’t think my sister could still move that quickly anymore. Peggy’s walking gait had become nearly a shuffle, her agility had taken a big hit, and she had virtually no stamina. It had been a year since we walked the trails together next door at the huge public park she once managed for the city. Even for a brief stroll around memory care’s modest garden, she often required someone to hold onto her arm so she wouldn’t tip over.
I knew I was supposed to toe the party line and think Peggy’s sudden sprint was terribly disruptive, but there were no adverse impacts on other residents. Nobody got physically hurt or was even agitated by it. So personally (and privately) I gave myself permission to be psyched about it. “Oh my god, she really can move! That’s great,” I thought. “If there’s ever a fire, she can still get out on her own.” Maybe that thinking was irrational, but I found it comforting.
Then my second thought was,“Oh no!” as I realized Peggy must have been really afraid. I worried what it could mean that the fear in her brain must have outweighed her mobility issues, at least for a moment. Even though she said later that she knew what she had seen wasn’t real, she still ran away from it. Why that happened, I didn’t know. It was all pretty confusing.
My sister’s condition was changing so rapidly from week to week that I was struggling to keep up. I remember being exhausted during this time period just trying to make sense of everything. I didn’t have any expertise, so I sought out my therapist, Katy, for more guidance.
When I told Katy all about Peggy’s possible hallucinations, she confirmed that what my sister was experiencing was part of the expected progression of her disease. She also explained that sometimes hallucinations aren’t scary at all. Everyone’s experience is unique—some hallucinations are benign, some aren’t. That’s why, she told me, I should start keeping track of what Peggy was seeing, to make sure she wasn’t in any danger of hurting herself.
I then checked with Peggy’s geri-psych doctor, who agreed that we should monitor her and keep memory care staff informed if she had any new visions. She also noted that hallucinations can get much weirder than just seeing a man who isn’t there. “Imagine,” she said, “when a glass of water tells you to leave the building.” Yikes! Luckily, Peggy was nowhere near there yet.
But Peggy did continue to be really loopy in conversation, repeating the same talking points over and over to anyone she spoke with. Her most common loop this particular month took the form of: “I want a cat,” “I want to move,” and “I want to go to Italy.” So, two greatest hits plus a brand new tune. She’d repeat these phrases over and over again until you could redirect her to something else. Once, she even added a little variation on the moving-out theme when she told me that she wanted her own place again. She added, “The people here are all really nice, but it’s time to move.” I remember thinking at the time, “Hahahaha. No.”
On another one of the days I was visiting, Peggy was almost incoherent. I had absolutely no clue what our hour-long conversation was about. She still thought people were taking her stuff, but I could see her room was unchanged, and everything was in its place.
By the middle of the month, something else changed with Peggy’s personality. Michael told me she had been argumentative with other residents and with him, on top of her usual loopiness. While confusion was a given, her agitation concerned me. I had witnessed it a few times, too. So we all had to be careful of how we interacted with Peggy. She was still “with it” enough that she was aware when people talked and interacted with her as if she were a child. She hated that.
I would see it happen sometimes with newer staffers—I guess they figured that Peggy’s cognition was low so they needed to talk to her in a baby voice. Fortunately, the experienced memory care staffers knew not to do that, and so did her outside caregivers. Liz and Desiree might use smaller words or sentences, but they were never condescending to her, ever. I never heard Michael condescend to her, either, and I was also careful not to do that. Since I didn’t have kids, I never picked up the baby talk habit, so it was easy for me to just speak to her the way I always had.
Right around Thanksgiving, Peggy fell out of her bed. Thankfully she was all wrapped up in her blankets, so her fall was cushioned and she wasn’t hurt. It also helped that her mattress and very thick boxspring sat directly on the floor (no platform), so she was already close to the ground and didn’t have too far to fall. Still, I began to worry about the frequency of her falls and little stumbles. I viewed their increase, however slight, as a harbinger of bad things to come.
As it turned out, I was right: December brought more big changes for Peggy, none of them good.
The first was her increasing frustration with the limitations on her daily life. When I saw Peggy in the first week of the month, she seemed relatively okay, for the most part. But she was noticeably a bit weepy and upset, and kept saying to me that she “wants to be a person” again. It took me a little time to work out what exactly that meant. She was trying to say that she wanted to be out in the world again, to go to lunch with her friends, to go to Disneyland, to be independent, to be able to care for cats—all of the things she used to do before Alzheimer’s took over her life.
She might not have been speaking eloquently, but this was Peggy talking, not Alzheimer’s talking. And who wouldn’t want those things? I know I’d be very frustrated in the same situation, especially in those lucid moments when I realized I was wasting away in memory care with no way out.
Obviously, a trip to Disneyland was out of the question, but my sister’s desire for it made sense to me, as it had always been one of her favorite things. If I were the one with dementia, I probably would be saying “I want to go to Death Guild” (my favorite dance club night where I’ve been hundreds of times) to anyone and everyone. So I didn’t think she was making unreasonable demands; she was just trying to express how much she missed her old life.
Considering all this made me so, so sympathetic to my sister’s erratic emotions and reactions, no matter how trying. Later, I sought out my therapist Katy for more perspective. I confided how difficult it was to balance treating Peggy as normally as possible with the realities of her life as a dementia patient. Objectively, I thought that everything Peggy wished for and looped on in conversation was totally understandable. If I were cooped up in memory care and couldn’t have a cat (after a lifetime of pet parenthood) I’d be upset, too—and I would let people know I was upset. I would be so angry to live in a place where everything I did was heavily regimented. I don’t think it’s mentally unsound in any way to feel like that, to want the life you’ve always had.
But Katy helped me acknowledge the bigger picture: My sister could no longer recognize her cognitive deficits anymore, thus her living arrangements had to be a certain way now to secure her safety and well-being for the rest of her life. Realizing the truth of that made things easier for me.
So I did my best to validate Peggy and her feelings whenever I could, to lift her up if she was feeling sad, to redirect her and get her to think happier thoughts as often as possible. Music really helped me a lot in this endeavor—80s tunes to the rescue! At least there hadn’t been any repeat (yet) of Peggy not recognizing her best friend Michael. However, she was still a little iffy on who was dead and who was alive, and she was also occasionally fixated on how she got Alzheimer’s. “I didn’t do anything!” she would say, and by that she meant, “I didn’t do anything wrong.”
Her balance had also become an issue. Liz had warned me that Peggy had begun leaning to one side when she sat down, and even a little bit when she was standing, too. I witnessed that a few times during my December visit. And her vision was terrible at this point, and she just didn’t see things even if they were right in front of her. Honestly, I wasn’t sure what she could see, and she couldn’t tell me. So getting in and out of bed (and chairs) was so difficult for her. She also needed help with walking, and if you didn’t hold on to her, she might meander away.
Yet physically, all of her vitals were good: blood pressure, cholesterol, and kidney function. Did this mean she was physically healthy? Not at all. When I discussed this all on ALZConnected, one member (a doctor) gently reminded me that my sister’s brain was damaged and becoming more damaged every day. She was not physically healthy, no matter what her vitals were, because her brain was dying. I admit, I hadn’t really thought about it that way before—but I did from then on.