Welcome to Five and a Half Years: Caregiving for My Sister with Dementia. This is a memoir about my younger sister Peggy—who lived with early-onset Alzheimer’s Disease, frontotemporal dementia (FTD) and the very rare logopenic variant of primary progressive aphasia (PPA)—and about my own journey as one of her caregivers. Peggy died on March 6, … Read more
[TIMELINE: November 2023] Our drive down to San Jose for an extended visit with Peggy was filled with apprehension about the week to come. Would she recognize me? Just how badly was she losing touch with reality? Was she really becoming so disruptive to the other residents that she was about to lose her memory … Read more
[TIMELINE: November 2023] By early November, Peggy was chatting even more frequently to the photos of loved ones in her room, a steady increase in the amount of time she spent disconnected from reality. Apparently, she was also now having complete conversations on the regular with one of my photos, according to her best friend … Read more
[TIMELINE: October 2023] The second half of October was a bit of a mixed bag for those of us on Team Peggy. There was more of the same drama we had been dealing with in the previous weeks and months, alongside a few new challenges that left us baffled. As expected, Peggy’s symptoms were worsening … Read more
[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 … Read more
[TIMELINE: September 2023] As September progressed—and so did my sister’s Alzheimer’s—Peggy’s best friend Michael and I continued to compare notes. We were tracking Peggy’s moods and behaviors closely, to better understand the stages of her disease and where she was at, according to those metrics. It wasn’t always easy to figure out everything, since Peggy … Read more
[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 … Read more
[TIMELINE: August 2023] The beginning of August brought a new worrying complication for Team Peggy: literal bouts of screaming, and it was hard to bring her out of them and back to any sort of calm state when it happened. Beyond merely arguing, she had progressed to shouting at objects and shadows and yelling at … Read more
[TIMELINE: July–August 2023] My sister’s usual challenges continued into July, but there were a few really bright spots, for which I was grateful. To start with, Dodie was able to come visit Peggy in person! Mid-month, Dodie’s daughter drove her up from southern California for a short stay. It was amazing for Peggy—and for Dodie … Read more
[TIMELINE: June–July 2023] Our local getaway mid-June to the Olympic, WA, rainforest came just in time for me, as my sister’s dementia was progressing rapidly and her deficits had become even harder to handle. Spending a few long days sleeping late, then wandering outdoors in the sunshine and hiking the beautiful trails deep into the … Read more
[TIMELINE: June 2023] June brought with it a short respite for me and some really wonderful days for my sister, despite her continued challenges. For example, Peggy was having a harder and harder time walking at this point. She would randomly seize up and then you’d have to be ready to grab her or otherwise … Read more
