[TIMELINE: August-September 2023]
The end of August was another roller coaster ride for us all. Peggy continued to have more good moments after my visit mid-month, but I knew such stability could never last. Still, I appreciated hearing about whatever joys she had encountered, and sought out details when I checked in with Team Peggy (a.k.a. her best friend Michael, memory care staff, and her supplemental caregivers).
Michael told me about one wonderful visit when Peggy seemed more like her old self. She was seated in one of the grey wicker chairs in the lobby when he got there, and she recognized him immediately. That was great, and it put her in a good mood. Then she was chatty and laughing and engaging, he said. They spoke back and forth for two hours and she actively participated in the conversation. This was quite a difference from early August, when she was being harassed by The Lady—a recurring (and scary) hallucination—and screaming back at “her” often.
I couldn’t help but envision Michael’s experience that day in terms of that analogy I once learned: A person with dementia is like a lamp with a faulty electrical cord. Wiggle the cord just right, the light bulb turns on. But move the cord even a millimeter, and the light shuts off. So those glimpses of lucidity are rare and precious—and I know Michael appreciated being there for them.
Of course, there were the times when The Lady showed up once more, or when Peggy got irritated by other memory care residents, which was happening more frequently. For example, a resident named Marilyn wandered into Peggy’s room and sat with her and Michael during one of their visits. Marilyn talked to herself for a while, then went to take a nap in Margie’s bed (Peggy’s roommate). Can you imagine? Anyone would be bothered by that, and so was Peggy.
Except when Peggy became unsettled, the consequences were much more severe. Although distractions would sometimes be able to calm her and get her back on track (like playing her favorite music or offering her chocolate from the secret stash we kept for her) it wasn’t always successful. And her mood and cognition was never as good as before she got upset.
Late in the month, I had a conversation with Peggy that chilled my blood. We spoke every day over the phone, and so I know the day before had been such a good one for her. But on this day, she was so upset; she was crying, yelling, and speaking mostly gibberish to me. I know she felt like she was speaking normally, but I could understand almost no words.
Memory care staff gave her an extra dose of trazodone, and I kept speaking soothing words to her until the medication kicked in. She finally became calm enough to speak—and then she said to me, clearly, “Debbie, I can’t do this anymore.” There was so much despair in her voice that it took my breath away. That was the real Peggy speaking, and she knew what she was saying.
In that moment, Peggy knew that she had Alzheimer’s and she knew what it had been doing to her. The only thing I could do then was try to comfort her as best I could. But that exchange sometimes haunts me—and I’m pretty sure it will continue to do so for the rest of my days.
One of the wisest men on the AlzConnected forum, a doctor from Tennessee, gently suggested that perhaps this was Peggy asking permission to let go. I hated thinking that might be the case…but honestly, it might have been the case. He also said, “…rather than haunting you, this can become a tender memory of the last time you spoke to your ‘real’ sister.”
It was a sweet way to think about things, but I wasn’t convinced. In fact, I was heartbroken. Peggy had been through so much already, and she had so many losses, but somehow she kept on being Peggy, kept making lemonade out of lemons like she always had since we were young. However, her desperation was real, and there wasn’t much I could do to help except keep her company, reminisce with her about better times, bring her treats, and play her favorite music for her. I hoped it would be enough, though sometimes it felt like I wasn’t doing anything at all.
To my great relief, Peggy still had quite a few more good days waiting on the horizon. For one, she had a lovely visit with Michael on August 30. When I talked to her on the phone afterwards, we spoke about how wonderful her friends were, and I singled out Michael. Peggy readily agreed.
“Yeah, Michael is the guy!” she exclaimed to me, which was her fun way of saying that he was a really special person to her. Michael was special to me, too—and still is. Since our parents were gone, Peggy and her care had become my primary responsibility; the buck stopped with me. Yet with Michael in the picture, too, it was not nearly the burden on me that it could have been.
Michael played a big role in making things pleasant for Peggy. In early September, he was lucky enough to catch more glimpses of her lucidity during his next visits—he told me that she was there 99% of his time with her, so Peggy was Peggy, not the person-with-dementia (PwD) version of her. What a gift to spend time with her like that! Sometimes we’d measure the good times in days, sometimes in hours. In early September, we measured in days, and that was amazing.
Sure, some bouts of incontinence continued but keeping her on a bathroom schedule helped, and so did Peggy’s positive attitude. She had been in a good enough mood during this entire period that even the occasional accident didn’t cause a meltdown. I remember Michael and I discussed Peggy’s state of being, and we hit on the word gracious to describe her. In every situation, my sister always tried to make the best of things. I admired her for that.
I was so pleased that Peggy got a little peace for once. I even managed to banish The Lady the next time she appeared, and she stayed gone for days. That was cool.
But The Lady ultimately reappeared, and I considered it a harbinger of bad things. What I didn’t expect was that it would be Covid. By the end of the first week of September, about half a dozen memory care residents had tested positive, and soon most everyone had, including Peggy. Sigh.
At least Peggy seemed to be okay. She had congestion and a bit of a sore throat, but no fever and no coughing. We considered Paxlovid, but decided against it because she’d have to go completely off the trazodone; those two drugs don’t play nice together. But was an easy decision, because her Covid symptoms were mild, and the trazodone had helped her so much recently.
Michael had to stay away from memory care for a couple of days during the Covid outbreak, so that was an unavoidable loss for Peggy. When he was allowed back to visit (masked as always, obviously), all of the public areas, like the dining room, were still off limits. That meant that all the residents were having meals in their rooms, like Peggy did often. The irony, right? And so he was able to visit her there, which worked out well for the both of them. That’s where the music was!
I continued to talk to Peggy every day. When we spoke right after her diagnosis, she wasn’t in the best of moods. On top of her Covid symptoms, The Lady and another hallucination—this time a man—were bothering her. I had no idea what this new character was about, so I just redirected the conversation (and redirected and redirected), until finally I found some success.
My winning strategy? I started talking about our dad and how funny he was. I asked Peggy if she remembered him saying things like, “I’m so mad I could squeeze a grape!” and she did, and I got her to laugh over that. Then I asked her if she remembered his filing cabinet, which got her laughing even more. She remembered that Dad kept a five-drawer filing cabinet, with the bottom two drawers jam-packed with jokes he had printed out. It was a combination of friends’ emails and jokes he had found on his own. Two filing cabinet drawers filled with printed out jokes. Two.
I always tried to focus on these kinds of memories when talking with Peggy. There was so much of my sister still there, and I loved existing in that bubble with her. So I talked about family experiences that we shared, loved ones, and pop culture from our childhood. Anything upbeat or fun or weird to get her to smile. Most of the time, it helped her wellbeing in measurable ways.
Unfortunately, Peggy experienced another spate of bad days, which began sometime after September 10. It seemed to be part of a strange, repeating pattern. Some of the days were even worse than before, and required additional doses of trazodone. Unsurprisingly, The Lady played a prominent role, as well as the new hallucination of a man, which Peggy hadn’t named yet. Michael and I had been both had some success at redirecting Peggy when those nefarious forces showed up to bother her, but Michael filled me in on a creative new strategy, just in case I needed it.
Michael had begun telling Peggy that The Lady was a big fat liar, who we shouldn’t pay any attention to. I loved it—and it worked about half the time! Hey, we had to take what we could get.