[TIMELINE: April–May 2023]
April had been a whirlwind for all the members of Team Peggy—a lot of new developments, a few bright spots, and a number of dramatic lows. So during the last few days of the month, I focused on making more preparations for my sister’s very near future. I talked a lot about all the recent changes happening with Peggy during my April 27 session with my therapist Katy, and as expected she gave me some practical and actionable advice.
One of the things we discussed at length was the fact that Peggy’s physical health seemed okay in a lot of ways, even though we knew overall it wasn’t. Her walking was so iffy at this point that I set out to order her a transport wheelchair just in case she would need one; this involved a lot more research and education than I expected. Who knew there were so many different kinds of wheelchairs? Not me, that’s for sure. And the process of acquiring said chair was a bit chaotic, as the company first brought the wrong one, took it back, sent another. At some point we had two! Not a big deal in the scheme of things; it was just one more issue that I had take time to sort out.
Thankfully, I was able to vent about all of these little frustrations on the ALZConnected forum, which was such a life saver to me. Not only did the members there offer unconditional support, I learned so much from them. Also around this time, some forum members asked me if I had looked into hospice care for Peggy. They wondered: Was it too soon to have her evaluated? At the time, I thought so. Peggy wasn’t dying, nor did we think her death was inside six months away. Although some members suggested that hospice might be good for her since Peggy could receive a higher level of care, I just didn’t think it was appropriate yet.
In hindsight, I wish I had checked in with hospice, even just to find out more information about the level of care that they could provide Peggy. But I didn’t realize that, then.
On an up note, the month of May saw another relative lull—key word, relative—for us. The beginning of the month was really good for Peggy. One reason was the lunchtime arrangements we had made for her (where she usually ate in her room) were working out well. She was away from everyone else (residents and staff) so no one could crowd her, and she got to listen to happy ’80s music the entire time. It was really for the best, since it would take her a long, long time to finish eating, like more than an hour for even a simple meal of sandwich, chips, and fruit.
As usual, Peggy’s best friend Michael was a hero in this area. His visits were like clockwork! He came every other day just after breakfast, helped her through lunch, and stayed for hours. I don’t know how managed to do this so often, as those mealtimes were hard. You’d have to coax her to eat and she would have questions. “Should I eat this?” she’d ask, pointing to a single carrot, and again for the next one and the next one and the next. You would sit there a long time as she picked up each individual piece of food. And not only did you have to have patience, but you couldn’t show any annoyance on your face because she’d pick up on that.
Michael also came through for Peggy in another big way in May. He arranged several Zoom calls with a few of Peggy’s friends, and she loved that so much. The whole first week of May was so good for her, and that was really, really nice to see.
The boost didn’t last—but then again, such a high point never does. Peggy’s good days continued through May 9, then she had a spate of very bad days, starting with another fall on May 10. This time the fall was bad enough that they sent her to the hospital to get checked out. ER staff were initially worried that she might have broken a hip, but thank god she hadn’t. It had never even occurred to me that a possible broken hip had been on the table! But I saw all of the medical reports and nothing at all was broken, thankfully. So I think we got lucky.
Apparently, Peggy had been in her room and just sitting on her bed (but not yet in bed for the night) when she fell off and slipped to the floor. After staff recommended an ER visit, they called me to confirm. And when the ambulance folk called me they told me the only thing Peggy could tell them about herself was her name. That’s how confused she was.
However, Michael was able to talk to Peggy over the phone once she was returned to memory care the next day, and at that point “she sounded good,” he told me. “Her voice was strong and clear. She sounded unfazed.” That was a relief to hear!
Unfortunately, Peggy’s cognition seemed to be a little off again when Michael visited her in person after that. He observed a small bruise on her head and, when asked, she admitted that her head still hurt a little. But the bigger issue, he noted, was that she was definitely more “word salad-y” than usual. Also during his visit, he observed her holding entire whispered conversations (that made no sense) with people he couldn’t hear or see. What a mess!
Aside from our concerns about a potential hit to Peggy’s cognition, another downside to this latest fall was that her glasses had been broken into multiple pieces. But Michael, of course, stepped up to help with that, too. “I’ll be calling the optometrist tomorrow,” he emailed me. “Maybe we will be lucky and can just order what she already had?” Again, a total hero.
A day or two later, Peggy had the first of several really bad days. Memory care staff called me for Peggy, and when she got on the phone with me she was just beside herself. She was yelling and crying, extremely worried that “The Lady”—a.k.a. her newly recurring hallucination—was going to “steal” me and then kill her. We went round and round but I just could not calm her down.
Twenty minutes later, all that was accomplished was that Peggy had accidentally put me on mute and she couldn’t communicate with me at all. I kept talking for a while and stated that if staff were nearby and could hear me, that I was going to hang up and that they should call me back. And that’s exactly what happened. At that point, though, it was already time for lunch and staff took her to her room to eat in peace. I was grateful for their help.
Peggy’s emotional difficulties continued in the following days, and I couldn’t help but wonder how much her recent fall was to blame. One adverse event like that easily could trigger several days of bad experiences in a person with dementia (PwD). And then caregivers—like me and Michael—are left to try to make things as good as we can for our loved one.
Part of Peggy’s downward slide was a noticeable diminishing of her vocabulary—which was already quite diminished. I wasn’t sure how much she even understood at this point so I spoke to her in simple sentences, short and to the point. No meandering, and no complex sentence structure; I didn’t want her to forget my point before my sentence was finished!
Then there was her balance, which had completely deteriorated in such a short time. We never, ever let Peggy walk alone anymore, as it was now guaranteed that she would fall. Good thing I was working out at the gym on the regular! I felt pretty strong when I was holding onto her arm. I knew she wasn’t going to fall down on my watch.
And then came the really bad days. Peggy had continued to have very angry outbursts, and they were becoming more frequent. I worried that it was another harbinger of things to come.
In recent weeks, Peggy’s hallucination, The Lady, had made yet another couple of appearances, including on one occasion in which Peggy got into a verbal fight with her about Les and me. Peggy, Michael explained, was specifically mad at The Lady for taking us away, which is why neither of us could come to visit, she told him. He assured Peggy that Les and I were both safe at our homes, and that I would be visiting her soon. He also tried to tell Peggy that The Lady was not real, that she was not there in the room, but he could not convince her.
Then Michael, being a very clever guy, came up with the perfect distraction. He stopped trying to change Peggy’s mind, and turned on the TV instead. Peggy’s attention completely shifted. Then he asked if she was hungry; she was, and he had food at the ready! The food also distracted Peggy from The Lady. In fact, Peggy ate all of her lunch that day.
Redirection is a stock tool of the caregiving trade, and Michael was brilliant at it. It’s not foolproof, but very often redirection works, and thus your PwD is soothed. On this day, he tried using just the TV and food to redirect Peggy from The Lady, and it was a complete success. Playing her favorite music and busting out the stash of chocolate we had hidden in her room were other effective strategies that we deployed often. Sadly, all of us on Team Peggy would ultimately need these plus every other trick in the book to minimize the effects of The Lady.
At first, we all thought The Lady was just like one of several other hallucinations that Peggy had begun seeing now and then in recent months, like she imagined talking to Uncle Nick right after his death. Over time, though, visions of The Lady got more and more scary for Peggy. For one, The Lady had begun arguing with her and feeding her misinformation. So in my opinion, that ventured into serious delusion territory, beyond mere hallucinations.
As my sister’s illness progressed, she always talked about The Lady and how she wanted to hurt us, and that terrified Peggy. So from time to time, I tried to “banish” her! I would say aloud to the room, on Peggy’s behalf, “We don’t like you. You have to go now!” But it didn’t have much effect. Peggy kept seeing her for months. It wasn’t until later on, after Peggy’s doctor prescribed her more powerful medications, that The Lady seemed to disappear.
At least I was able to visit Peggy in May, so I had the chance in person to try to make her feel more secure and stable. According to my notes, I was there the entire week of May 15, which was also the week that Michael and I brainstormed a list of additional bands from Peggy’s vinyl collection that he thought needed to be converted and burned to CD for her.
At the top of the list? Ambrosia, which I originally thought only had one popular song (“Holding On to Yesterday”). Turns out, I was completely wrong; they put out at least five studio albums, and Peggy owned them all. Michael educated me on all their hits so I could be sure to include all the right songs when I made the CD mixes for Peggy. And I really needed that guidance from him, as I was never an “easy listening” or “yacht rock” kind of girl. But Peggy loved it, so I was determined to make as much of it as possible from her collection available to her.
Another positive for the month was that Peggy got to experience a few more pleasant, drama-free days after my visit. Her oldest friend Dodie called her all the time (as did I), so sometimes Peggy would hear from both of us a few times each during any given day. And Michael continued to visit every other day, too, so Peggy got that trifecta of goodness—talking to all three of us—a lot.
And although she still had all her usual deficits, we all tried to focus on the little things that could bring Peggy some peace. One thing that helped was that the weather had started to warm up, so we were able to take Peggy outside into the memory care garden, which was a beautiful area. It was separate from the rest of the grounds of the Carlton, with its own picnic tables and chairs and big planters that had wide, flat walls so that you could sit on the edges. It’s a very serene little space, one that’s very relaxing and manageable for a PwD.
The week after my visit, Michael took Peggy out into the garden again and this time she fell asleep while sitting out there. Mmmm, falling asleep in the sun…sounds like heaven. Afterwards, she shared with me—as best she could—how wonderful the day had been. Even though she had lost so many words, I understood her joy as she told me how she got to sing and go outside that day. She was obviously in a great mood! I was happy for her. It was a big win.