[TIMELINE: June 2023]
June brought with it a short respite for me and some really wonderful days for my sister, despite her continued challenges. For example, Peggy was having a harder and harder time walking at this point. She would randomly seize up and then you’d have to be ready to grab her or otherwise she would fall. We would still walk with her—very slowly and very carefully—if possible, but now we also had the option of using her new transport wheelchair from time to time. Sometimes it was just more convenient, like when bringing her to the dining room from her bedroom.
At least she could still sort of do chair exercises alongside some of her fellow residents in memory care. Well, she wasn’t actually doing the exercises; mostly she would just sort of bounce in her seat. But that didn’t matter. Ever the musician, Peggy was still able to count the reps! So in that way, she was genuinely participating with the group, and that was the most important part.
Another ongoing issue was Peggy’s frequent confusion, which frequently popped up in new and strange ways. A new guy named Bill had moved into memory care in recent weeks, and Peggy for some reason was convinced it was our brother Les. Even though we knew Les hadn’t visited her in nearly two years, she kept telling us that she saw Les all the time. Was she hallucinating again? We were stumped for a good while, until we learned it was Bill she was talking about.
Peggy even interacted with Bill as if he were Les, which I witnessed during my next visit the first week of the month. As you can imagine, that created even more confusion—mostly for Bill!
I could see that Bill was all kinds of confused by Peggy. The look on his face when she tried to talk to him just screamed, “Who is this woman, and why does she think she knows me?” But when I mentioned the situation to my therapist Katy, she encouraged me to let it go, to not make a big deal out of it to Peggy unless it started to cause more serious problems. Luckily, it never did, and eventually Peggy decided Bill wasn’t Les after all. Crisis averted!
So we solved another “memory care mystery” without too much fuss, and this one even had a funny twist: Imagine my surprise when I discovered that Les and Bill look nothing at all alike!
Overall, Peggy still got along well with some of the residents, which made for a better quality of life for her. It was really nice to see, because Peggy had always been a natural at making friends and acquaintances wherever she went. In particular, she really liked Esther—and so did I. Esther kind of reminded me of the mom of an ex-boyfriend (who I really liked). Esther would often lapse into Spanish, and my Spanish is rusty, so sometimes I could understand her and sometimes I couldn’t.
One day in early June, Peggy and Esther were standing in the hall interacting, and from an outsider perspective (mine), it looked like they were having a real conversation. However, Esther was speaking Spanish, which I knew Peggy didn’t understand, and Peggy was speaking in word salad that day, so I’m sure Esther had no idea what Peggy was saying either. So there they were, two people talking, even though neither knew what the other one was saying. It was fascinating—and that was life in memory care. At least they both seemed happy in the moment.
So there were no huge changes for Peggy during the month, although The Lady continued to vex her sometimes, and they continued to quarrel. Well, The Lady didn’t actually exist, but that didn’t stop Peggy from arguing with her! I realized that we were going to have to tweak my sister’s medications again soon, which Katy and I discussed. I wasn’t happy about it, but I knew it was important to curb Peggy’s anger—and the occasional yelling that would come as a result. Sigh.
Always, at the back of my mind, was the constant worry that Peggy’s angry outbursts were a harbinger for even more disturbing things on the horizon.
And I wished we could figure out more about the Lady! If we couldn’t banish her completely, maybe we could diffuse some of her scary influence. Michael, Dodie, and I all tried to inquire but could never get a real description, even if we supplied Peggy with words to choose from.
The only physical description we had to go on was that The Lady appeared pretty solid to Peggy, as in not transparent. So she wasn’t a ghost, nice. But was she old? Young? Was she thin? Heavy? What (or who) exactly was Peggy seeing when The Lady appeared to her?
According to Peggy’s geriatric psychiatrist, a recurring presence like The Lady to a person with dementia (PwD) was exceedingly rare. I asked around on ALZConnected but no other caregiver had examples to share. Katy and I talked about it, too, and we tried to brainstorm. Hidden trauma didn’t seem to be the cause. Did Peggy see a frightening movie once and never told any of us about it? Maybe, but that didn’t seem to fit, either. I think we’ll never really know the answer.
On the up side, an unexpected (yet most welcome) development was in store for Peggy in June: Les showed up! Yes, in the middle of the month, our brother Les—not Bill but the real Les—came to visit Peggy in memory care. I was so shocked when I heard that I thought I was going to faint!
Unfortunately, Les was not happy about the way Peggy looked; he thought she was almost unrecognizable. He was upset and pretty startled by how much she had physically deteriorated, by how “old” she appeared, he said. This was maddening for me to hear! Maybe he didn’t understand that Alzheimer’s is a debilitating disease that causes dramatic bodily changes. I get that.
But Les’ reaction still made me angry. I couldn’t help think that maybe he was so surprised by Peggy’s condition because he had not been there over the past two years to witness her gradual decline—even though he knew she wanted to see him, and I had begged him to visit.
And I had the fleeting, rage-inducing worry that he would do something drastic, like threaten to sue the Carlton or try to make changes to Peggy’s care. Which, obviously, I wasn’t going to let happen.
When I mentioned all this to Dodie, she said she was not surprised by Les’ bad attitude. She pointed out that it was similar to how nasty he was with Peggy when they lived together, when he insisted that she follow a keto diet. That was, sadly, true. He was so disrespectful to her then, and the whole time she was trying her best. I won’t be forgetting that any time soon, if ever.
But all of this drama was for me to deal with behind the scenes. For Peggy, Les finally visiting was great. In spite of the later stage that Peggy was in, she still knew she had a family, and that family was important to her. She wanted to see us! Peggy mentioned Les at least once every time I saw her or talked to her on the phone. She also said she wanted to see the three of us together.
Of course, in my head I thought, “Sure, when hell freezes over!” but I would never say anything like that out loud. It was my job to keep her calm and happy, so I always played along.
I realized that Peggy wanting to see Les had become just a basic, fundamental need. As her dementia progressed, she was no longer remembering and wishing to relive better times in her life, or wanting to discuss any particular family memories. She just wanted to be with us.
So I rooted for Les to show up for her when he could, and I continued to do the same.
I remember one day mid-month that I arrived just in time; I walked into memory care right as Peggy was yelling, “I want my sister!” So I stepped around the corner and sat down in front of her. “Here I am,” I said. Peggy looked at me in surprise, said, “Oh!” and calmed down immediately. She had genuinely forgotten that I was already in town and had already been to visit the day before! Even though it started out a bit rough before I got there, Peggy’s day turned out to be a good one. We hung out for hours, I got her to eat, and I got her to laugh. That was all she needed.
Then, in spite of all the chaos of the previous couple of months, I finally got a nice break. My partner Jon and I took a short trip to a local lodge, which was a much-needed respite for me and a mini-vacation for him. I’d been feeling so weary, like I was in the middle of running a marathon. I was beyond tired, but I knew I had to push on—I was just waiting to get my second wind.
But in the case of Alzheimer’s, you don’t really know where you are in the marathon. Are you halfway? A third of the way? You have no idea, so you just have to keep running. And speaking of running, it was at around that time that the song, “The Sun,” by The Naked and Famous became my theme song. It’s just relentless, and it sounded like what was going on in my head then.
In the meantime, I focused on our little getaway. First of all, the lodge was in the rainforest! It was four hours from home, yet it felt a world away. It was fantastic. We had lots of tasty food—like salmon to die for—and got to enjoy two full days of hiking, waterfalls, and hummingbird watching. Our room on the second floor even had a little deck where we could sit in the sun, read, and look out at the lake. It was just enough of a break to take the edge off everything I’d been dealing with.
And the chill vibes continued when I got home, when I confirmed that Peggy experienced more good days while I was gone. Desiree (one of the supplemental caregivers I hired), had gone to a dinner event hosted by Carlton staff for memory care residents and caregivers, and she sent me a short video of Peggy interacting with an Elvis impersonator. She looked enchanted by him!
And when I next spoke to Peggy, she was still in good spirits. Singing karaoke and participating in chair exercises continued to be quite therapeutic for her. Also while I was away, Michael had arranged a phone call for Peggy with her friend Sue, who she hadn’t seen in a while, and he got in touch with Peggy’s friend Christine, who lives in wine country. Christine drove the 2.5 hours south to come see her, so Peggy actually had a full weekend with friends!
And believe or not, Les had also been back to visit Peggy in memory care. Peggy’s other supplemental caregiver, Liz, told me that he had begun stopping by on Sundays, and I was thrilled. No, really, I was. I didn’t trust him then to not make any crazy moves, so I remained wary, but it was important Peggy got to see him. That made her happy, and I was happy for her.