[TIMELINE: October 2023]
The second half of October was a bit of a mixed bag for those of us on Team Peggy. There was more of the same drama we had been dealing with in the previous weeks and months, alongside a few new challenges that left us baffled. As expected, Peggy’s symptoms were worsening as her disease progressed, and none of that was pretty. However, there were still good days for her to experience—and we made it a point to seek those out and enjoy them when they happened.
In the familiar column, Peggy continued to struggle with communication—likely exacerbated by the recent increase in her trazodone dosage. I hated that her cognition levels were so uneven, but the medication was important because it helped to mitigate her angry outbursts. Sure, she still became agitated, but she was screaming a lot less than she had before.
Getting Peggy’s yelling and screaming under control was absolutely necessary if we wanted her to retain her placement with the memory care staff she trusted at The Carlton. If she was too disruptive they could boot her, and we didn’t want to risk that. A move to a new facility, such as a small group home, at this late stage would significantly disrupt her fragile mental health. So we went forward with the meds increase, and accepted the fact that sometimes she would be totally confused and at other times relatively lucid, even within the same conversation!
For example, I had a few phone calls with Peggy during which she accidentally hung up on me, and she just could not figure out what had happened.
In one incident, our phone call started out okay. Peggy and I had something close to an actual conversation that lasted about fifteen minutes. I could detect a slight edge in her voice, so I was on alert to try to keep everything as light as possible. But at some point, it seemed like she got a little confused by the phone itself, and that was it. After she hung up on me, Mike (the younger caregiver who didn’t know the words matinée or serendipity), called me back five minutes later.
Mike told me that he heard Peggy yelling about me being “gone” so he jumped in to try to fix things for her, and quickly figured out that our call had gotten disconnected. His caregiving instincts were always excellent, even if his vocabulary wasn’t. Great detective work, Mike! He put Peggy back on the phone with me immediately but, unfortunately, it was too late. She had already gone downhill so fast. After about ten minutes of me trying to soothe her, she got distracted by a couple of other residents and began yelling at them, and that was it for our conversation.
From my side of the call, I couldn’t quite tell what the residents were doing near Peggy that was so objectionable to her (probably nothing at all), but she became agitated enough about whatever it was that her speech became 100% unintelligible. There were a few words scattered about, but mostly she was just uttering those one-syllable staccato sounds that had begun entering her speech lately, sounds that were not words. What was sad was that I could tell that she thought she was speaking real words to me. And then she hung up on me again. Sigh.
Another familiar drama came in the form of Peggy’s recurring (and, often, terrifying) hallucination that she called The Lady, which still harassed her and argued with her, despite the higher dosage of meds. Then there were Peggy’s difficulties with eating enough at mealtimes, which had caused her to lose a lot of weight. We were all really concerned about her calorie intake. In fact, sometimes these issues were part of the same problem: Peggy’s frequent arguments with The Lady meant she was distressed at mealtimes and so she didn’t eat much.
Fortunately, my therapist Katy had some great suggestions about how we could help Peggy deal with The Lady. I thought these were wonderful strategies to try:
1. Ask Peggy what she would like for me or Michael to say to The Lady.
2. Ask Peggy what we can say to make The Lady go away.
3. Assure Peggy that “I’ll take charge of it.”*
*Note: I had said this one to Peggy already, and so had Michael, and we had only varying degrees of success with it. But at least we were on the right track!
Katy and I also discussed Peggy’s phone usage, and how it might be coming to an end soon since it seemed like it was starting to become very confusing for her. Sometimes when we would call her lately, Peggy actually thought we were there in the room with her but she couldn’t see us. That was very disorienting to her, of course, as it would be for anyone.
Katy’s advice? For as long as Peggy wanted to continue trying to use the phone to talk to us, we should do our best to keep participating in that with her. And we did do that, but it was so frustrating. For one, it was so hard to keep Peggy’s attention for any length of time. Sometimes she would accidentally hang up on us, even right after she picked up the call. Or she would mute us, or talk to some imaginary person instead of the one on the other end of the line.
Katy also said that we should follow Peggy’s lead, a.k.a. if the entire endeavor ultimately got too stressful for her, that’s when we should make her phone disappear.
Then there were the new challenges that had surfaced, like trying to figure out dental care for Peggy given her increasingly limited mobility, frequent toileting problems, a sudden loss of object permanence, and what I can only describe as periodic breaks from reality.
Regarding the dentist, it became a question about how much longer we could safely transport Peggy to appointments, as she now had severe mobility issues. It was no small feat to get her there, and we wondered if we would still be able to make that happen in the coming months. Now, some of you may be curious why this came up on our to-do list at all, when there was so much else to worry about regarding her health. I debated it myself! But the truth is that Peggy had always taken great care of her teeth, and she had a wonderful smile to show for it. I think we all really wanted to honor that as long as we could. To our relief, memory care staff offered to help.
Meanwhile, Michael was dealing with far more than his fair share of any toileting problems Peggy encountered, because he visited her so often. He definitely had some rough bathroom days with her; it’s simply the common nightmare that all caregivers live in during late Stage 6–early Stage 7 (or frontotemporal dementia, which can progress rapidly). I am so grateful to him, because she benefited so much from his care, and he always had so much empathy for her.
One of the worst of these early incidents happened on a day when Michael and Peggy had lunch together. The meal went well enough, Michael said, even though Peggy wouldn’t eat all of it because she was saving half of it for me. This had happened before, and had become more common with her. On the one hand, Peggy really needed to eat, so it wasn’t great that she didn’t finish her meal. But on the other, we couldn’t help but be struck by her concern for others. That was a Peggy hallmark, and I was glad to know that core piece of her personality was still in there.
After lunch, Peggy told Michael she had to use the bathroom—but not in time. Two female caregivers quickly got Peggy into the bathroom to help clean up the mess, while Michael went into the closet to get wipes, fresh incontinence briefs, etc. What a chaotic situation!
Even with two staff caregivers helping her, Peggy still needed Michael, too. He said that she was screaming and babbling to the women in the bathroom, which he could hear even outside the door. Eventually, they called him back in there to help hold Peggy up since she kept sitting back on the dirty toilet and thwarting their efforts to get her completely cleaned and changed. As it turned out, Peggy’s bra was the only thing still clean, and she was very angry.
Peggy didn’t like to be kept waiting (and who could blame her), but she never realized how much was involved in the cleanup, and didn’t quite understand how to cooperate. To his credit, Michael had nothing but empathy and sympathy for her ordeal, even though it torpedoed their nice visit. “Poor thing! I am sure those wipes are cold and they use a ton each time,” he told me later.
Finally she was all cleaned up and dressed. They all helped her into the transport wheelchair and got her back out to the activity room/dining room.
So she was settled and calm—until Michael had to leave. Peggy just would not let Michael go when it was time, which was the same reaction she had recently when I tried to leave after a visit. Michael and I both expected that it was because of a new symptom: Peggy had suddenly lost object permanence. She no longer had the understanding that we would continue to exist when we weren’t right in front of her. She believed that if we left, she would never see us again. Michael told her he’d be back, but of course that didn’t work. It never worked for me either.
All we could do was make our exits quick, in the hopes that Peggy could then be distracted by staffers in memory care. And sometimes that did work, which was a small mercy.
Later, Michael—because he was the kind of best friend to my sister that we all wish for—told me that, in spite of all of the bathroom drama, food drama, “too many people” drama that marked that wild day, he liked to focus most on all the many happy moments with Peggy that also occurred. “She was smiling and laughing,” he explained. “She said she was having fun, and I believed her.”
So even though Peggy’s down moments were lasting longer (and “getting louder,” as Michael put it), he still believed in finding the good days for her. I wanted to believe that, too.
We couldn’t control much, but I knew we could do that—and it paid off! Peggy enjoyed some lovely days with Michael in the following weeks. After one of these visits, he sent me an email describing how it went, and I was so happy to read it! He’s what he wrote (lightly edited):
I wanted to tell you immediately that today was the most perfect morning I have had with Peggy since before memory care! She was great! Don’t get me wrong, there were moments, but sooo much more wonderful than for so long. When I arrived, she turned and saw me, and immediately her face lit up. I asked her how she was doing, and she said she was doing much better now!
Even during her “moments” she mostly diverted herself to talk about something else! She would also start to say something aloud that reflected her dementia reality, and before I could change the subject, she would say “or maybe not?” like she thought it through when she heard it aloud and decided maybe it was not the way it was? She was doing really well!
She mentioned The Lady twice only; the first time I diverted her, but the second time she diverted herself! So minimal talk about The Lady—who apparently was sitting right next to me on the bed for quite some time! And when it was time to go…she was only quiet, neither angry nor scared.
Overall, it was an amazing day yesterday. I was very proud of her—and happy that she felt some of that “good day energy” today as well.
Even now, I remember how it felt to read this message from Michael, and others like it. I loved Michael’s descriptions of the wonderful days he and Peggy shared. Plus, it was always reassuring to hear about moments when Peggy still seemed a little bit like her old self again.
I always tried to monitor Peggy’s sense of self, but it became a bigger concern this month after she began exhibiting periodic breaks from reality. Essentially, she had begun having conversations with our photos—and this was on top of her confusion when speaking to one of us on the phone.
What did this mean? I asked my therapist Katy, and she suggested a theory. Perhaps Peggy actually believed that we were there in the room with her, since she could see us in all of her photos? Or, I thought, what if she just imagining it, as a source of amusement? We couldn’t be sure. But I found it all a little distressing, and I wondered whether I should remove the photos from Peggy’s room. But Katy said no; she believed it was probably comforting to Peggy.
That sounded reasonable, I thought. And then I realized, “Hey, I could use some comfort, too.” All of these new things to be worried about (and to be responsible for handling on Peggy’s behalf) took a toll, and I was pretty sure that talking to the photos in my house was not going to help.
What I needed was self-care, some outdoor time, and the company of loved ones. Just my luck that the next day, my partner Jon’s brother, his wife, and their son (our nephew) arrived for a visit. It was great to spend some quality time with them, and I absorbed that energy like a sponge.
One day during their visit, when everyone was out of the house except for me and our nephew, memory care staffers called me to see if I could break a screaming loop of Peggy’s. For as much as my sister had been having those good days, there were still some bad days in the mix.
I talked to her for so long trying to break the scream cycle (with little success) that I was completely frazzled by the time I got off the phone. Then I walked into the living room where our nephew was sitting, and he asked me if I was okay. I was not. He’s not a hugger, but I was so grateful he asked the question that I would have grabbed him then and there if he let me. I just really appreciated any acknowledgement that I got from anybody that my care for Peggy—that my permanent state of being “on call” to help her in any way I could—was hard work. To be honest, not many people ever asked me how I was doing, so I was always surprised when they did.