[TIMELINE: JANUARY–APRIL 2019]
The first couple of months of the year were almost normal. My sister’s mood was mostly calm, and the mediation agreement we signed with our brother the previous November continued to hold. My partner Jon and I were still rested from our European vacation. The concerts we attended by The Men They Couldn’t Hang and Corvus Corax were everything I’d hoped they would be.
I continued to read everything I could get my hands on. Jon’s mom hesitantly suggested Somebody I Used to Know: A Memoir by Wendy Mitchell. I say “hesitantly” because she was worried that I might get upset. Not to worry! I was already upset. Nothing she could say, or that I could read, would change that. But as it turns out, it is a wonderful book, not upsetting at all. It’s kind of inspiring, actually. It was written by a person who was diagnosed with early-onset Alzheimer’s. It gave me a lot of insight on how to talk to Peggy.
Another resource I found at this time was Thoughtful Dementia Care: Understanding the Dementia Experience by Jennifer Ghent-Fuller. This book is worth its weight in gold. I felt like I was finally getting on the inside track with Peggy. It was so helpful. Using tips from both of these books allowed me to further build trust with Peggy. The trust was already there between us, but I wanted to do everything in my power to keep our relationship as strong as I could, for as long as I could. I know Alzheimer’s has ripped apart family relationships before.
There were also challenges. Peggy was having more difficulty with money, and more trouble around food preparation. At least she and my brother were living in the same house so he could keep an eye on her, and make sure that she ate properly.
Another issue was that Peggy had recently adopted an elderly cat with a lot of health problems from someone she vaguely knew on Facebook. That decision was a classic bad judgement call due to Alzheimer’s—I just didn’t recognize it for what it was at the time.
Peggy was an animal lover from the get-go, and as long as I could remember she would take care of animals in need, especially cats. No way was she going to let this cat, Asia, be abandoned. Alongside her other two kitties, she looked after Asia for months, but ultimately we had to euthanize her once it became clear her kidneys were failing.
At around this same time, there was more trouble at home. My brother isn’t the best communicator the world has ever seen, and I caught him more than once badgering Peggy over food issues. He wanted her to be on a keto diet and she was having trouble following it. She just couldn’t remember everything he told her to do. He interpreted her behavior as Peggy ignoring him when in reality, her memory was already compromised.
He had also found some health and wellness websites discussing the Bredesen protocols and that started a big fight between us. I read the links he sent me, and I thought they all had that whiff of a scam to them, so I was highly resistant to asking Peggy to participate.
But in my brother’s eyes, it was a cure, and we were being stupid if we didn’t try it. [There is no cure for Alzheimer’s at the time of this publication.] If it had been just the diet, I wouldn’t have been as against it. But the protocols were so much more complicated. Once you added in working with practitioners trained in Bredesen plus all the supplements required, it was a super expensive program—a $5,000-plus price tag for the first month! This would be Peggy’s savings we’d be spending, and I worried that if it cost us that kind of money for months or years, we could quickly run out of the funds needed to pay for Peggy’s assisted living and memory care.
Peggy, of course, was looking for any chance to be cured. I wanted that, too—but I had to point out that if the protocols were in any way a real cure we’d have already read about it, probably on the front page of The New York Times, in a 50-point font, above the fold!
In the end, Peggy kept up her attempts at the keto diet as long as she could, which did result in her losing a lot of weight, which wasn’t a bad thing. It did nothing to improve her cognition, however. Against my better judgement, we also signed up for the Bredesen newsletter. I was convinced it was the lesser of many evils (and would sidestep a big tantrum from my brother) and so I agreed to it, even though it was stupidly expensive for what it was—$75 a month—and we were locked into a subscription for a year before we could cancel.
As winter turned into spring, I continued to weigh my sister’s assisted living and memory care options, and strategized how I could sell them to her. I had narrowed the choices down to a couple of stand-outs. One facility had apartments with no stoves in them (only a microwave), with the goal of safely keeping people in their assisted living apartments for longer. It was located in Peggy’s old neighborhood in San Jose. Another benefit was that it would be easier for her friends to visit—and the familiar surroundings might help her remember things longer, too.
The other place at the top of the list was a newer facility. It was located much closer to our other family members, with a nicer garden area than the first facility. Its apartments had stoves in them, though, so Peggy would have to move to memory care sooner. It was a tough decision, but both had waiting lists, so fortunately I had time to really think on it before I presented them both to Peggy and we made the final decision together. It was really important to me that she have a say.
In fact, throughout this entire process as her caregiver, my guiding principal was to help preserve as much autonomy and sense of self in Peggy that I could, for as long as possible. Even though she was diagnosed with dementia, she still had a lot of living to do. She could still visit with our family and spend time with all of her friends. She could still go on outings and engage in fun activities. She could still sing, and sit in the sun, and enjoy listening to her favorite music. She was still capable of so many, many things. And for as long as she was still with us, I was determined that we would help her do as many of those things as her limitations would allow.
This philosophy really came into play in April, when Peggy revealed to me her own top bucket list item: She really wanted to go to Italy and Sicily, if at all possible. Our Italian/Sicilian family was always so important to her, so I understood the attraction of such a trip.
Plus, my sister had been a terrible flyer for years (ever since she got stranded in Hawaii on 9/11) so her insistence on such an extensive undertaking really caught my attention. If she was going to voluntarily spend over ten hours in a tiny plane seat flying over an ocean (twice), I knew the trip must be really, really important to her.
Truth be told, I’d always wanted to go to Italy and Sicily myself, so I was more or less on board with the idea, as long as we could manage to do it safely for her. And so Jon and I immediately began researching ways in which we could realistically make it happen—the sooner, the better.