[TIMELINE: September–October 2023]
The last day of September was a particularly bad day.
Memory care staff called me around 1 p.m. to talk to Peggy, and as soon I got on the phone with her, I knew something was wrong. She was alternately screaming, yelling, and crying—so much. I tried to calm her down for almost an hour, but no dice. Later, I called the memory care director so we could strategize. Was there anything we could do to calm Peggy, or improve her moods?
The director suggested that we seek to change Peggy’s medication so that she could take both a morning dose and an evening one, instead of just a single high dose at night. It seemed like a good idea, so I immediately emailed Dr. Phan, my sister’s geriatric psychiatrist, to check. When she wrote back to tell me it was possible—and that it might really work—I was relieved.
However, all of the drama had already torpedoed my day. It’s not that I didn’t want to help Peggy. I did, always. But there were two competing issues. First, it always made me feel terrible when I couldn’t make things a little better for her right away. And second, my efforts to improve things were usually so time-consuming that I could never get any other work done. Sometimes dealing with Peggy’s dementia (and its impact on everyone around her) took me all day.
And the entire time, Peggy would be in such distress. So here we all were, flailing. By 10:45 p.m. that night, I started feeling like my mind was clearing up from all the dementia work from the day, but by then I just wanted to go to sleep. I did the best I could, but it was still painful. Sigh.
A couple of days later, Peggy’s best friend Michael had a great visit with her. I appreciated so much that she could still experience some really wonderful days among all the bad ones, and I think that helped all of us on Team Peggy cope a bit. Of course, such calm could never last.
A day or two later, Peggy’s moods and cognition were all over the place again, and she was back to the non-stop screaming. When I got on the phone with her again, she yelled at me the entire time. Nothing I could say would comfort her. I found out later that her oldest friend Dodie had a similar experience during their recent call, and Michael’s last visit with Peggy had been bad, too. Dodie also told me that the last several times they had spoken, Peggy mostly screamed at her.
So I was pulling my hair out at this point. All we could do was ask Peggy’s doctor to increase the frequency of her trazodone doses again, in case that would give her some relief.
At least Michael and I were able to share a little memory care humor now and then, where we could make light of nutty or silly things that had happened with or around Peggy. (Hey, I will always take that when I can get it!) One time early in the month, Michael told me that memory care staff had served residents open-faced tacos, and we both thought that was hilarious. His exact words to me were, “Open-faced tacos? What were they thinking?”
I was already laughing before he shared any additional details, but he went on to say, “WTF? Who would serve something so messy and dangerous?” We agreed that it was a ludicrous decision.
Thankfully, Michael was visiting Peggy that day and was able to prevent any lunchtime chaos for her. He immediately asked staff to change her menu, and they gave her a whole sandwich and some cantaloupe instead. A crunchy taco? “I knew she would not be able to cut it, eat it, or not wear it,” he wryly joked. To their credit, the staff fixed it quickly, no damage done, and Michael and I each got a smile out of it. (They were smiles on the edge of hysteria, but smiles nevertheless.)
For her part, Peggy went on to eat her entire substituted meal “with minimum issue,” Michael said. And since she had struggled sometimes with mealtimes lately, I considered it a win.
We continued to monitor Peggy’s food intake and her weight, because she was starting to look a little thin. But like I told Michael at the time, the situation didn’t yet raise up any red flags for me, but I definitely saw some flags that were “pink with a little bit of hot pink around the edges.” That’s because right around the stage of dementia Peggy was at, most people start losing weight.
There can be various reasons for weight loss in a person with dementia (PwD) or Alzheimer’s, including diminished sense of taste, distraction during mealtimes, or some other physical problem. Obviously, I had no idea if any of these were why Peggy had lost weight—and she couldn’t tell me. So I continued to check in about it with Desiree and Liz, the supplemental caregivers I hired for Peggy. Michael also was paying close attention, to see if he could get more information.
That was just one of the ways that Michael was a very attentive caregiver to Peggy, and I loved his willingness to compare notes with me so often. We talked nearly every day! I know Peggy appreciated it, too, even as her awareness of her surroundings was becoming less and less sharp.
Michael was very special to Peggy, and she had told me this often. Her way of verbalizing this recently was to confirm that Michael was “the guy.” She really trusted him, too, and expected that he would make everything okay. Both of these sentiments came up in our conversations a lot.
For example, Peggy and I shared an interesting chat on the phone in mid-October. Memory care staff who facilitated that call told me that she had been having a bad day, but she seemed fine when I spoke to her. She was pretty calm, in fact, even though she told me that she thought people were taking or moving her belongings, again. Nobody actually was doing this—it was just a recurring paranoia of hers that popped up sometimes—but it used to really upset her.
This time, though, she seemed absolutely unfazed when she mentioned it, speaking in a sort of “you know how it is” kind of tone. She wasn’t upset at all, just resigned. Was this due to her increased trazodone doses? I couldn’t be certain. She wasn’t making a big deal about it, but I wanted to comfort her just the same. So I simply told her that Michael and I would make sure everything was back where it should be. Her reply? “I know. Michael is the guy.”
Who could argue with that? Another takeaway I had from that call was how funny the metrics had become that we used to gauge her cognition. This time, she knew it was me on the phone, she knew Michael was going to come by the following day, she knew he was “the guy,” and she knew that she saw Liz the day before. Cool, right? She wasn’t screaming either, which was a big deal.
Looking back, I suspect it was the trazodone that had kept her calm during that conversation, because her moods had begun leveling out a bit again like they had the previous month. But I was grateful for that. Getting Peggy’s medication dosages correct was becoming a bigger and bigger challenge, it seemed! But obviously it was key to my sister’s wellbeing and quality of life.
But how to best communicate with Peggy now that she was being more heavily medicated? It had become perhaps the biggest issue facing those of us who spoke to her frequently. My therapist Katy reminded me that the most important thing was to just meet Peggy where she was. This was absolutely true, we had to do that. When Peggy was agitated during this stage of her dementia, she would lapse into one-syllable staccato “words.” But they weren’t really words; they were usually just angry sounds, like bah bah bah. So I’d nod my head and pretend to understand. If I was really lucky, she would utter some kind of real speech at some point, but mostly she didn’t.
But there were more bright spots to be had this month. For one, Peggy enjoyed a couple more perfect days during visits with Michael, he told me, and then my partner Jon and I both came to San Jose for over a week. We headed down around October 23, played tourists at See’s Candies to pick up some local chocolate for Peggy, and then got to visit her in person every day just like we had in September. And again we stayed with Michael for a couple of days in the middle of the week, so we could grab more quality time to hang out—and to talk about Peggy.
I think the most important thing that happened during this trip was that Michael and I finally had a deep heart-to-heart conversation about Peggy. I had to. I couldn’t wait any longer. I confessed that I always expected him to disappear at some point, because taking care of Peggy was hard and it would probably only get harder. I also told him that if he did disappear, I would understand.
Michael very matter-of-factly informed me that I was mistaken. He said that he and Peggy had been good friends for decades, he loved her, and he was in it for the duration. I believed him. He also made sure that I understood that they had never dated. I don’t know why he was so concerned about this, but he was. Maybe because he thought that an ex-boyfriend later stepping into a caregiver role would be inappropriate? I didn’t know. I was just glad that he was there.
Because in my books, Michael was, is, and will always be the guy.