[TIMELINE:January–February 2022]
Despite January’s downward spiral into some weirdness and drama, I thought we were holding things together pretty well. By February, however, the tables had turned—and in a very bad way. Just like during the “walker incident” a few weeks earlier, we needed multiple members of Team Peggy to figure out what was going on and why, and what we should do next.
It started with an email I received from Maricel, the director of memory care, informing me that Peggy had actually hit her roommate Patricia! Apparently, while Patricia was sleeping (and with her private, full-time caregiver nearby in the room) Peggy just walked up and slapped her, waking her up. “It seemed like it was unprovoked…. We were all shocked,” Maricel told me.
I immediately sent an email of my own, to Peggy’s geriatric psychiatrist Dr. Phan, who works at Kaiser’s memory clinic and specializes in caring for dementia patients. I told her the basics, and let her know that they were testing Peggy for a UTI. Since UTIs are a common cause for when dementia patients act out in unexpected ways, that would have been the simplest explanation.
While I waited for the test results and a reply from the doctor, I forwarded Maricel’s message on to Peggy’s friend Angelique, because she has a nursing background and also knows a fair amount about long-term care facilities. I hoped she’d have some wise advice for me!
Then I pinged my sister’s supplemental caregiver Liz, who is also a nurse. I was relieved that she was available right away to visit Peggy in memory care. I clued her in on our latest dilemma, and she agreed to investigate the situation. In our latest phone calls, I thought Peggy had started to seem more and more disoriented; she kept telling me that Patricia had left and someone else moved into their room, which made her very happy. In reality, Patricia was still her roommate, and Patricia’s private caregiver was also there with her almost all of the time.
Maybe Peggy thought Patricia’s female companion now officially lived there instead of Patricia? Peggy was also confused as to the gender of both of them; she was convinced at least one of them was a man. Patricia had very short hair so maybe this threw Peggy off? My sister wasn’t comfortable with men in her room (except for her dear friend Michael), so perhaps this confusion caused her angry outburst? Maybe she was just mistaken and reacted badly? That seemed to me like a reasonable enough explanation, but I just wasn’t sure.
Peggy not being able to distinguish the genders of Patricia and her caregiver could signify a few different things about her condition, and that had me concerned. It could be that her perception was worse than we all thought. It could be that hallucinations were taking hold. Or it could be any number of other scary things. I knew so many bad outcomes were possible, and I was hoping against hope that none of them were happening to her—but I was not an expert.
Since Liz had years of experience in this area, I asked her to assess Peggy’s condition as best she could, and let us know her impressions. I also asked her to engage in a round of “trust, but verify” on my behalf: I had her examine Peggy’s room and check that everything was in its usual place, because Peggy had told me that Patricia would take her stuff.
As it turned out, Peggy had already shared this concern with Liz during her previous visit. While out and about with Liz during activities, Peggy kept asking to go back to her room because she was worried Patricia and others were going to steal or move her belongings. I didn’t know if Peggy’s concerns had any basis in reality—things are never what they seem in memory care, and you can never rely on a PwD’s recollection of events—but I thought it was a possibility.
I was glad when Liz assured me later that everything in Peggy’s room was in its usual place and nothing was missing (and that this was also the case during her previous visit). However, Liz confirmed to me that Peggy was definitely experiencing some other issues. For one, it was clear Patricia frightened her, and that likely was ratcheting up my sister’s stress levels.
Peggy said she couldn’t sleep when her roommate was around, and Liz noted that she did look quite tired during her visit. So I called Peggy and quizzed her. Was Patricia doing or saying anything in particular that bothered her or interrupted her sleep? Eventually she told me it was nothing specific—it was Patricia’s mere presence in the room that kept her awake.
I understood why she might be uncomfortable. For decades, my sister had lived in her own apartment alone with a lot of privacy, and even when she first moved to The Carlton she had a private suite. It was a really difficult transition for her to be sharing a bedroom with a stranger.
But then I remembered the times recently that Peggy had also said to me out of nowhere, “I’m really afraid,” without elaborating any further, even when I asked her for more details. I realized my sister genuinely felt fearful of Patricia, and probably had from the get-go. That was a more difficult issue to deal with. Could that be why she had lashed out? It was really out of character for her!
So I followed up with Dr. Phan again and explained these new developments. She suggested that we start Peggy on Sertraline (aka Zoloft), to see if that might help lessen her anxiety, lift her mood, and keep her calm. Perhaps with a little more seratonin in her brain, Peggy would not feel so stressed out all the time and could get some sleep! Dr. Phan cautioned that the drug might only work for a little while, in which case she would have to increase the prescription strength over time, then switch to something stronger. But we still had hopes for the short term.
Shortly after this, I heard back from Angelique. She didn’t have any great theories about what was going on—the effects of dementia can be so unpredictable—but I was still really happy to talk to her. It got me reflecting about Team Peggy, and how thankful I was for each one of them. My core group was my partner, Jon; my friends (Dana and Diana); Peggy’s friends (Angelique, Michael, and Sue); Peggy’s supplemental caregiver, Liz; my therapist Katy; and my trainer Mike. All of the recent incidents with Peggy were difficult, but I wasn’t on my own. I had a team!
So while it was a month of big ups and downs, a veritable roller coaster of dementia, we somehow made it through. Having so many wonderful people supporting Peggy (and me) was instrumental in helping me cope, even as things were getting darker and more difficult.
Something that will stay with me for a while: I watched in real time a caregiver I knew develop a serious alcohol addiction while trying to cope with her mom’s vascular dementia decline. After her mom’s diagnosis, the woman moved in with her and cared for her at home to the very end.
Being the primary caregiver for a parent is such a horrible experience for anyone, so it’s no surprise she sought out ways to decompress. But it was horrific for those of us in her caregiver community to watch her struggle from the sidelines. Thankfully, she is now in recovery since her mom passed. Hopefully, I’ll always stick with music and going to the gym—and then, the worst thing that will happen to me is that maybe I’ll end up with those proverbial abs of steel.