[TIMELINE: FEBRUARY–MARCH 2021]
My Monty Python humor saved my sanity a lot heading into 2021—but not always. The topics of Peggy’s phone calls were so stressful, and there were so many of them, and my job was to either soothe her mood or to troubleshoot an issue that had come up for her. Many times the situation required me to mentally play Twenty Questions, starting with: Is it bigger than a bread box? Because you have to start somewhere when all your loved one’s nouns are gone.
Often, the issue was Peggy’s declining perception. For example, she always thought she needed cat food. She would claim she didn’t have any and we needed to reorder right away. In reality, she had a stockpile of it in her suite, but she literally couldn’t see the cans or bags of food. Her glasses were fine (they corrected her vision to 20/20); it was her perception of what she was seeing that had become a problem. At least at this point, if I directed her to the food during one of my visits, she could find it—although she was always surprised to realize it had been there the whole time.
Another day, Peggy called me because her ear buds weren’t working, yet again—except, of course, they weren’t actually broken. At least that was an easy problem to solve: explaining to her, again, how to turn the volume setting all the way back up so she could hear.
Sometimes Peggy called me to complain about the facility staff. Every laundry day, for example, she would be livid about how her clothes were sorted wrong when they delivered them to her. Her laundry had actually been done correctly, but Peggy couldn’t perceive certain items of clothing if they were left folded on top of her bed. I think the colors blended together in such a way that she couldn’t distinguish the clothing from her bedding.
Fortunately, bringing Liz and Desiree in to the facility to help my sister part-time also helped me a lot, too. They could problem-solve most of these kinds of issues for her in person when I couldn’t be there, and they also made themselves available to me (via calls, texts, and email) to provide real-time updates on how Peggy was doing day to day. I always felt fully informed.
There were occasional downsides, though. One day, Liz was sick and couldn’t make it in to the facility, and Peggy just could not grasp why Liz wasn’t there. She was so lost that day. I talked her through it as best I could but it took hours, over multiple calls, to calm her down.
The most difficult phone call I got from Peggy was when told me that her next door neighbor, Ursula, had been moved to memory care. The thought of memory care terrified Peggy, and she was horrified that Ursula was now there. I talked her through that, too.
I’d met Ursula a few times, and she was further down the dementia road than my sister. Peggy herself had told me that she once spotted Ursula without any clothes on wandering the hall outside their apartments. Peggy had taken her back inside and helped her get dressed. At the time, I was happy to hear that Peggy was still able to help out her friend in that way, but sad she had to experience such a visceral preview of what might happen to her. And I know it made her that much more fearful of her own Alzheimer’s progression.
I tried to tell Peggy that memory care would be good for Ursula—that she’d get a lot more care there than in assisted living, but my sister was unconvinced. I realized there was no benefit to pushing the issue with her then, and talking about it more would only upset her further. The best thing to do was redirect her to a different topic of conversation.
This was also around the first time I noticed Peggy starting to showtime. “Showtiming” is when a person with dementia can act almost normally, although only temporarily; it’s like they’re putting on a show for the benefit of someone else, usually a doctor, to prove that they’re just fine. I imagine it takes a lot of effort to put on a performance like that for any amount of time, but the fear of memory care was a strong motivator for Peggy. Fortunately I had read ahead, so I was aware of this phenomenon, and knew I needed to discuss its appearance with my sister’s care team soon.
Although there was nothing about my sister’s disease I could change, I tried my best to help her navigate through these challenging moments. I wanted her to feel supported as much as possible. Medications and activities might help lessen the symptoms, but they wouldn’t slow down the progression of the disease or make it go away. I knew that. All I could do was validate Peggy when she talked about rational things she wanted but were not going to happen, such as getting her old condo back, traveling to new places, or driving to visit her friends.
At the beginning of March, I reflected on all the topics of my many, many phone calls with Peggy recently. It got me thinking about what I had learned so far about Alzheimer’s—not the everyday issues I faced with Peggy, but more a “What am I dealing with here?” type of question. When you read about Alzheimer’s, the most common words you see are “confusion” and “memory.”
Yet I didn’t witness Peggy showing confusion nearly as much as frustration and a lack of comprehension, at least at this stage of her illness. She had an understandable desire to get her old life back. Who wouldn’t want that? That wasn’t confusion. Peggy was often wrong about things, but I can’t say she was confused by the facts of her daily life. Instead, it was almost like I was working with someone with a learning disability—and, of course, there was the aphasia.
I talked to my therapist Katy about it all. Ultimately, I ended up accepting that there was no point in determining which terminology was more correct, other than as a way for me to try to make sense of everything. My biggest goal was to try to understand Alzheimer’s and FTD so that I wouldn’t accidentally diminish Peggy in any way during our phone calls and my visits in person.
I’d say something like, “Oh, that reminds me; what was it that Aunt Betty told you about Christmas?” I’d always know the answer before I asked because I didn’t want her to get frustrated. If she couldn’t give me the answer I’d say something like, “hmm, I thought it was X, but it sounds like you think it’s Y, so you’re probably right.” And I’d leave it at that. It worked like a charm.
These moments were all very exhausting to experience, especially over the phone, because I never knew who was going to be on the other end of the line when I picked up Peggy’s call. Would it be my sister, or someone who just seemed like her but was increasingly becoming not her?