Chapter 21 – Life in Stage 5

[TIMELINE: AUGUST–SEPTEMBER 2021] By August, my sister’s cognition had declined so much that even simple-sounding tasks could be challenging for her. Halfway through the month, we were concerned (again) that she might have a urinary tract infection. UTIs are often the cause of seemingly out-of-the blue bad behavior in PwDs, though once treated their cognition … Read more

Chapter 20 – The Spectre of Memory Care

[TIMELINE: JULY–AUGUST 2021] July 2021 was a long, long month. On top of everything going on with Peggy, I ran into another unnecessary hurdle trying to deal with her Kaiser healthcare portal. I never logged into Peggy’s actual account because they have strict rules against that. Instead, they gave me my own caregiver account that was … Read more

Chapter 18 – Harbingers and New Normals

[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

Chapter 17 – Speaking Her Language

[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

Chapter 16 – Humor and Twenty Questions

[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

Chapter 15 – “I’m Trying”

[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

Chapter 14 – Where’s My Foot?

[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

Chapter 13 – Creative Workarounds

[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 personally 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. … Read more

Chapter 12 – Life in Lockdown

[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