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: JULY 2021] Later in July, my partner and I visited Peggy and picked up Jezebel’s ashes for her on the way. They’re in a pretty little resin container with an imprint of one of her paws on the top. We set it on Peggy’s dresser, and Liz placed Jezebel’s collar on top. It looked … Read more
[TIMELINE: MAY–JULY 2021] As spring went on, things were going about as well as they could. But in late May, I got a call at 4:15 in the morning. Peggy had fallen, hit her head, and had to be taken to the emergency room. All of the apartments in her assisted living facility have two … Read more
[TIMELINE: MARCH–APRIL 2021] In March 2021, Peggy’s caregiver Liz—who had a lot of experience with people with dementia—told me that she thought my sister was probably nearing the end of Stage 5. My first reaction was: How can that be? It had only been a few years since she was diagnosed in 2018. But when Liz … Read more
[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 … Read more
[TIMELINE: DECEMBER 2020–FEBRUARY 2021] The rest of December was no better. Peggy’s confusion really started to get ahold of her. Conversations like this were typical: Me: Where were you when you lost your mask? Peggy: I was on my way up in the air. Me: What do you mean? Peggy: I didn’t mean that. I … Read more
[TIMELINE: SEPTEMBER–DECEMBER 2020] During our RV-powered visit to Peggy’s assisted living facility in August, my partner Jon and I were allowed to meet with her outside in the front courtyard, although we had to sit six feet away from her and everyone had to wear masks. Not ideal, but much better than no visit at … Read more
[TIMELINE: MAY–AUGUST 2020] To my immense relief, Peggy did well during the Covid lockdown. Staff at her facility were ever present, so she felt looked after and safe. The medical technicians took the temperatures of each resident every day, and everyone was told to wear a mask. My sister had always been a rule-follower. If … Read more
[TIMELINE: FEBRUARY–APRIL 2020] The previous couple of months had brought much discussion about Covid to our family. But at the time, we still didn’t know a lot about it. Did it involve a lab leak in China, or a wet market? Was it something we had to really worry about, or plan around? It wasn’t … Read more
[TIMELINE: JANUARY 2020] January 2020 was shaping up to be a busy month for me. On top of being there for Peggy as her Alzheimer’s progressed (and the constant problem-solving it always entailed), I felt it was time for me to sign up for some classes towards my continuing legal education. I wanted to be … Read more
[TIMELINE: NOVEMBER–DECEMBER 2019] In November, less than a month after we returned from Italy and Sicily, our family was plunged back into the unpredictable world of endless problem solving. The first issue that popped up was my sister’s growing frustration that she was not an independent person anymore. Peggy’s assisted living facility has a policy … Read more
