[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 a person in authority told her to do something, she’d do it with few questions asked, especially if she thought it was in her best interest.
This was all during the time of cloth masks, when we were saving the N95s for doctors and nurses. I found some cute cloth masks on Electrothreads, so I picked up more than a few for myself and my partner. Peggy wanted some of these too, so I ordered her a couple. We each got a dinosaur mask like the one below.
I bought this one for myself, but Peggy loved it so much, I gave it to her.
My personal “lockdown project” was learning how to weave chainmail—bracelets, necklaces, and even mask chains so I could always have my mask hanging around my neck. I made a couple of chains for Peggy too, and permanently attached them to her masks. So long as she had her mask around her neck, she would be less likely to lose it.
Another reason I think Peggy did well during lockdown was because her stress and frustration levels were low. Everyone was in the same situation as her—those who had Alzheimer’s and those who did not. With lockdown affecting everyone, the playing field had been leveled. Not that it was all peachy keen; she would complain that she was bored and that there was nothing to do. True. All activities had been canceled. She’d call me and get distracted as we spoke. Or she’d start to leave me a voice mail, get distracted, and then have a conversation with a med tech or other staffer who was checking in on her. Then she’d forget she even called me!
During this time I noticed her aphasia getting worse. Peggy seemed to be aware of it, too.
Then the end of May brought an unpleasant first: Peggy fell. It wasn’t a big deal as far as falls go. She and several other residents were walking outside in the courtyard, and she just lost her balance. Staff called me and told me about it, and assured me that she wasn’t hurt. Peggy also called me and told me what happened. She put it down to being clumsy, and if not for the Alzheimer’s and FTD, I may have agreed with her. But I also knew that increasing balance issues were common with her conditions, especially the FTD. Plus, the ground in the courtyard was absolutely flat; there was nothing over which to trip. I stayed low-key on the phone and didn’t tell her I suspected her disease was progressing. No need to worry her.
In spite of Covid and the lockdown, our parents’ house sold early in the summer. We had put it up for sale in April, and our anticipated close of escrow was for the 4th of July weekend. I crossed my fingers and toes and, thankfully, it went off without a hitch. My partner Jon and I opened a bottle of sparkling wine to celebrate. Then the title company misplaced the original copy of my power of attorney—the one document I absolutely had to have in order to manage Peggy’s life. So frustrating! So I had a come-to-Jesus discussion about it with them and, lo and behold, they found the document and returned it to me. But it was added stress I didn’t need.
Right after the house sale closed, it seemed like Peggy fell off of her cognitive plateau. She was a little more forgetful, and people’s names often eluded her. Her aphasia had obviously progressed. It was weird—sometimes she knew the word she wanted, but she just couldn’t say it until someone else said it first. The progression spurred me to gather all of her tax papers, car registration, and other financial documents and truly get them all organized. I got her permission to change her address to my address. She felt bad about that, and about me having to take over all her responsibilities. She told me that sometimes she “just can’t do anything” and it made her feel bad about herself. I told her it wasn’t her fault, that it was the disease.
By August we were still locked down, but the rules weren’t quite as restrictive as they had been April through June. Jon and I decided to do something bold: We would rent an RV and drive down to see Peggy in style. That way, we could control our living space, eat only the food we brought with us, and interact only with each other. We brought the RV home a full day before we left for the Bay Area so that we could scrub it down and disinfect all its surfaces.
Prior to this trip, we had never really been into the RV life, but I have to admit there were some things I really enjoyed about it. I liked sitting up high and surveying the world as I drove. I liked parking in the pull-throughs at rest stops alongside the semi trucks, so we didn’t have to back up in the parking lot when we left. I was also entertained at one stop we made when—after I parked, opened the door, and finally jumped to the ground—the truckers nearby all clapped. I think they were surprised to see such a tiny person driving such a big vehicle.
When we got into town near Peggy’s facility, we parked in front of our friend’s house, and she generously let us power everything in the RV using her electricity. We then had dinner with her and her housemates outside on the front lawn—socially distanced, of course. Still, we hadn’t seen any of these friends in months, and it was great to be able to spend time with everyone, even if we all had to stay six feet away from each other.
I was even able to get my hair cut safely during that visit, by my favorite stylist—at her house, in the backyard, with both of us wearing masks. Ahh, so many work arounds! But it was important to adapt in order to keep ourselves—and especially Peggy—safe.