[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 woods all really helped me to recharge. It was a good thing, and it had been so desperately needed because caring for a loved one with late-stage Alzheimer’s and frontotemporal dementia (FTD) is never a picnic for anyone.
Fortunately, our short stay at a lakeside lodge was so restorative that I managed to hold on to that feeling of respite for another couple of weeks after we got home. It also had me reflecting on how much had changed for Peggy in terms of her relationships, her life, and her health
For example, I’d been thinking more about Christine, and Peggy’s long friendship with her. I believe she and Peggy had been friends since the ’80s, having met soon after Peggy began working at Happy Hollow Park & Zoo. They used to go on all sorts of adventures together before Peggy’s diagnosis, including visits to amusement parks like Disneyland, her favorite, and the beach and boardwalk in Santa Cruz. They were both wine people, too; Christine shared my sister’s love of wine tastings, barrel tastings, and attending special events on vineyard grounds.
Peggy especially used to enjoy meeting with vintners, where she could hear them talk about their wines and she could learn more about the process of producing them.
Peggy even seriously considered trying to get a job (post her retirement from the parks department) pouring wine for customers at one of those wineries. I encouraged her to apply because she had the personality for it, and I thought she’d be great at it. She would have been able to express that part of herself, and do something that was purely Peggy.
Years before retirement, though, Peggy had already brought me and my partner Jon deep into the winery world. Although I’ve never been a huge wine drinker, I started going to events with Peggy because it was her special interest, and I wanted to support that. She was always a person who would “go with the flow,” engaging in other people’s interests while often sacrificing her own. I thought she deserved having someone do the same for her—and then Jon and I came to love it!
In fact, just recently we spent some time at a few of the same wineries we once visited with Peggy, like Mauritson, which was probably her favorite. And it turns out they remembered her! We had a long conversation with the woman pouring, who had been employed there forever. She said she remembered Peggy well, adding, “She really liked her wine!” Ha! So true. It’s a lovely place; some years go, they even hosted the best barrel tasting we ever attended. No wonder Peggy loved it.
Iron Horse was another of Peggy’s favorites that we visited recently; they make sparkling wines. We picked up their Fairytale Cuvee—a special batch from only the best grapes—that is so good. Well, I’ve never known Iron Horse to make a bad blend of sparkling wine, but the Cuvee is really amazing. I know Peggy loved it, too. Jon and I like it solely for the taste, but I think Peggy also liked it because Disneyland regularly contracted for a supply of it. Perfect for her, right?
Looking back, I’m so glad we let Peggy invite us so deeply into her wine collecting hobby. We all had some good times together. We had been familiar with wine tasting before, but she actually introduced me and Jon to barrel tasting, which turns out to be really fun, too.
Barrel tasting used to happen the first two weeks of March in wine country, though it’s been curtailed recently for various reasons. They way it was originally set up, visitors could go from vineyard to vineyard and taste the new wine right out of the barrels. It’s kind of a proto-wine, but far enough along in the fermentation process that you can often taste what the final product will be like in about 10 months. The vintners are usually present for the entire event, and available for questions from the crowd. We always liked asking the wine makers directly for details about their latest batches and how they were made—and all of that I learned from Peggy.
Another fun aspect of barrel tasting was that, if you were so inclined, you could buy “futures” while you were there, meaning you could essentially pre-order six bottles or a case of this proto-wine at a heavy discount. That way, the wineries receive some up-front funding, and customers get the anticipation of receiving great bottles of wine at the end of the year. It was kind of like Christmas when you found out your wine was ready! Because if you’re anything like me, you would have forgotten what you ordered so many months ago, and so you’d end up with surprise wine.
Today, I treasure those memories, because all of those times with my sister are now in the past.
But in between then and now, I tried to focus on supporting Peggy while she was still with us, and needed me. What had been happening in June? Well, she had been enjoying a few good days, which was nice to see. But then as we neared the end of the month, her bad days returned.
Her best friend Michael told me that Peggy’s walking had changed, worsening further. Apparently, she began moving even more slowly, and had become more confused with her sense of direction than ever before. Her leaning backwards had become more dangerous. Was it the further progression of her Alzheimer’s? Was it the anti-psychotic drugs she was taking? Both?
Ultimately, the cause didn’t matter. What was important was that we recognized her Pisa syndrome for what it was and that we all did everything we could to keep her safe.
Michael once remarked how strange it was to witness the Pisa syndrome in action—when Peggy attempted to walk upright, she would lean so far back, with her back so rigid, that it was like she was being pushed back and pinned at the shoulders. As the two of them walked together, Michael would hold her left hand or arm, and brace his right arm across her back to try to keep her upright and on course. It was becoming a near-insurmountable challenge for her, even with the help. So Michael and I both thought that Peggy’s days of doing any walking at all were coming to an end.
Also around this time, the bathroom trips got much more difficult for Peggy—because they weren’t already difficult enough, right? I’ll spare you the messy details, but Peggy, even with the extra help, wouldn’t always make it to the bathroom in time, and then there would often be a mess to clean up. She had a couple of recent falls in the bathroom too, but because people were there with her, they were more like guided drops down than anything else. Sometimes she would be guided to the floor, sometimes to the toilet. But thankfully she never got hurt.
Whenever Peggy would have a mishap like that, it would completely wear her out, and she would be left without any energy reserves at all for the rest of the day. After her latest bathroom episode, I could tell how done she was, even if I wasn’t there with her in person. Her voice was totally flat on the phone—and she seemed to have no clear recollection of what had happened.
That worried me—and Peggy experienced some additional upsetting moments at the end of the month which only heightened my concerns. One day, I got a call from two of the staff caregivers, Gina and Rebecca, in memory care. I could hear Peggy crying in the background, but I couldn’t talk then—I was at a doctor’s appointment and was just about to get called in.
I hated that I couldn’t be there for her in that exact moment. That triggered caregiver guilt (and stress) for me, because I wanted to help calm Peggy down, but couldn’t. When I called back a short time later, Rebecca explained that Peggy had been experiencing full body shaking and trembling earlier that day, which was causing her distress. What could be the cause of that?
Rebecca further explained that they had been sitting together and singing Peggy’s favorite Fleetwood Mac songs aloud, and Peggy was gripping Rebecca’s hand so hard it felt like she was having contractions. Yikes! That was distressing just for me to hear.
But I steeled myself, and talked to Peggy directly not long after that. To my relief, she wasn’t anywhere near as upset as she had been earlier that day. Of course, she was still in that cognitive slump that often follows a meltdown, so I was careful with my questions to her. I kept the conversation short and simple, and very light. I was even able to get her to laugh a couple of times, though it was a hard task. At least I was able to help her a little, I think.
Afterwards, I sent a message to Peggy’s doctor at Kaiser and told her everything that had happened—and she got back to me within the hour! I love that woman so much. Peggy’s doctor wanted to do a blood test to look at her sodium levels immediately. She suggested that the shaking and trembling might be due to that and, if so, it was very treatable. That was good news.
I couldn’t celebrate for long, though, because in short order, The Lady came back. Sigh. She didn’t exist, but Peggy was once again arguing with her. We wished she could be free of this recurring, sometimes scary, hallucination that constantly hassled her. And then there were the paranoid delusions that surfaced sometimes, like on laundry day. Peggy was now convinced that when the staff took her clothes to wash, they were stealing all of her stuff—no matter how many times Michael and I assured her that they would return all of it once it was cleaned.
As Michael and I expected, Peggy’s new transport wheelchair became more prominent in her life by the beginning of July. We now used it whenever we brought Peggy from her room to the dining room and back again. The ease and convenience of the wheelchair was nice in some ways; however, its presence marked another sad milestone in Peggy’s declining condition.
So July started out with another ride on the dementia roller coaster. Although Peggy would go on to have some good days that month, there were also bad days, and a lot of situations where nothing made much sense and we struggled to ease her confusion and wild moods.
Always, it seemed, chaos loomed in the background and threatened to take over. In one instance, I was on a phone call with Peggy that started out well, but even within that thirty minutes the conversation went up and down. The emotional changes were so fast, I think I got whiplash. One minute Peggy was laughing with me, and the next she was yelling at The Lady. A couple of times one of the caregivers came by to try to get Peggy back on track, with mixed success.
Michael confirmed that that was his experience with her as well. The Lady was up to her evil tricks again—Les and I had been stolen (whatever that meant), and “they” had taken Peggy’s stuff. Any topic I “discussed” with Peggy was a jumbled word salad that I had to carefully navigate in hopes of not triggering her to go into meltdown mode. It was a mess.