[TIMELINE: SEPTEMBER–OCTOBER 2021]
About a week after Peggy couldn’t find her way to the bathroom in her small, assisted-living apartment, it happened again. I got yet another frantic phone call from her and, again, I had to give her step-by-step directions. Thankfully, she was able to find her way to it—but then she described her refrigerator to me and wondered aloud what the thing was for and what it did. That was even more disconcerting. Facility staff tried to explain to me that her confusion was just the progression of her disease. “Yeah, thanks,” I wanted to say. I already knew that.
But witnessing my sister’s decline got me thinking. Early in my time caring for her, Peggy’s doctors (and also my own therapist) would often ask me if I could identify when she first started showing any symptoms of mild cognitive impairment (MCI). Having a good ballpark figure for how many years and months ago a person’s MCI began making an appearance can be really helpful information to give their doctors because specific cognitive symptoms typically show up at different stages of dementia. I realized I didn’t really know the answer.
In talking it through with Peggy initially, we could pin down events as far back as 2016, but nothing prior to that. The only years Peggy (or my partner and I) could recall any incidents of her showing symptoms were 2016, 2017, and 2018. Then I dug deep and remembered one more thing: in 2015, I found some notes Peggy had written to herself about Dad’s bank account. Her writing was shaky and spidery, not at all like her normal big loopy handwriting.
I knew the notes were hers because the writing had her left-handed slant, plus Peggy and I were the only ones working on Dad’s accounts at the time. So that put the earliest example that any of us could pinpoint to 2015. When you look at the research on dementia stages, though, most guidelines say symptoms can develop up to seven years prior to a diagnosis. So what was going on in Peggy’s life before 2015? Would I be able to find out?
One night, in my usual state of exhaustion, I decided I just had to know more. So I called Barb, Peggy’s former boss during the many years when my sister was a city parks manager for San Jose. I hadn’t spoken with Barb on very many occasions, but when I have, I always remembered why I liked her. She’s intelligent and insightful. She may have been Peggy’s manager, but they were also good friends. I could see why they got along well.
So I asked Barb if she could tell me anything about Peggy’s MCI. Looking back, did she notice any symptoms while Peggy was still working for her? Barb didn’t hesitate to say yes—and suggested she go get her work journal from more than ten years prior. I was impressed! About three minutes later, paging through her records, she had found some good information for me.
Barb told me that in late 2010 and early 2011, Peggy had started struggling in her job. You could have knocked me over with a feather. I had no idea. Peggy was staying with our parents at the time—she had gotten temporarily smoked out of her home after a fire gutted some of the other condos in her complex. Did our parents notice anything? I’ll never know because both of them passed away several years before Peggy was diagnosed with Alzheimer’s and FTD.
Barb said she didn’t realize what was really going on with Peggy; otherwise she’d have said something to her, or to me. I assured her that, before her diagnosis, none of us had known what to make of some of Peggy’s more recent unusual behavior either—and, since Peggy was so young, no one thought it could be Alzheimer’s. We talked about Peggy’s work habits, too.
At the beginning of Peggy’s tenure with the parks department and for many, many years after, she had been meticulous at her job, Barb told me. However, by the start of 2011, Peggy was leaving some of her tasks unfinished, and she didn’t always follow through with project details and expected communications. I also remembered that in 2015 (a year before she retired) Peggy told me she had applied for a promotion but didn’t get it, and was disappointed.
Barb filled me in on what really went down back then. It turned out that Peggy was passed over for that job because others in the department had observed some of her more recent lack of follow-through. This was really important context for me. I thanked Barb for her time and for sharing so much detail—and then I just sat there for a bit, my head spinning.
Thanks to Barb, everything was so much clearer to me. In fact, when I actually did the math, it all really made sense. If we assumed that 2010–2011 was the approximate start date for Peggy’s MCI, then she had been living with it for about 7 to 8 years before being diagnosed with Alzheimer’s in 2018. It all lined up. The reason I didn’t really notice much going on with her in those early years was because I didn’t see her a lot during that time—at least, not often enough to catch the incremental changes in her behavior. I guess this is why a spouse or work colleagues usually notice symptoms in a PwD before most others do.
The day after I spoke to Barb, Peggy had another mini crisis. Alzheimer’s—the gift that keeps on giving! This time, Peggy called to tell me that she couldn’t find her phone at all, the phone she was currently using to talk to me. I reminded her of this, and she swore that the phone she called me with didn’t belong to her, but someone else from the memory care unit.
I told her I was pretty sure the phone was hers because her name popped up on my phone when she called. She still didn’t believe me, and said she was going to go downstairs to check with the receptionist at the front desk to see if the phone really did belong to her. I told her that was a good idea, and to call me back when she was done. Surprisingly, a little while later she did. I was relieved she remembered to call me back, but also that she remembered why.
So we got that issue resolved. But then Peggy told me that she couldn’t feel her phone. I had no idea what that meant. She had the phone in her hand, but she just “couldn’t feel it,” she said. I knew her hand wasn’t numb, because if that were the case, she wouldn’t be able to grasp the phone at all and keep hold of it as we were talking. But she couldn’t really explain to me what the problem was. I had no clue! So I redirected our conversation to a different topic.
After all of this, I met with my therapist, Katy, and told her everything that had happened in the last few weeks. I was hoping she could shed some light on the issue Peggy was having with her hand and, fortunately, she did. She told me that it’s a neurological issue—that Peggy’s brain wasn’t registering what she was holding. I had no idea that was even a thing.
We also discussed the sometimes fraught nature of communication that I had been having with Peggy lately, where I’d have to decode what she was talking about. For example, Peggy would speak about the “little brown things” (I guessed that this maybe meant Chloe’s kibble food) and also the “white thing” (which likely referred to the roller holding toilet paper in her bathroom).
I also wondered to Katy if it might be better for Peggy if she moved to a memory care unit at an entirely different facility. The one I had in mind was where our aunt and uncle both lived, so Peggy would see them every day, plus her friend Michael lives in that town, so it would be easier for him to come visit. Katy was skeptical. While she didn’t rule out the option completely, she warned me that such a move might lead Peggy into a big cognitive decline.
That same night, I was still on the fence about what to do when my partner by chance spoke to his mom. He asked for her opinion on what to do, since she often gives very sensible advice. She pointed out that Peggy had been getting great care at her current facility, and that everybody liked her there. This was absolutely true! When I mentioned this to Katy, she agreed. “Listen to your partner’s mom,” she told me. (And I’m glad I did!)
So a couple of days later I had a long conversation with Maria, director of Resident Services at Peggy’s facility, The Carlton. She said we should move Peggy to memory care as soon as we could arrange it—and there was a space opening up right then. Yikes, it felt so soon! But I didn’t disagree with her. Peggy had been ready for that change for a good while, unfortunately.