[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 as effective as possible at helping Peggy, so I ended up taking almost every class offered on elder law—everything from wills and trusts to Medicare/Medicaid qualification guidelines to the intricacies of arranging long-term care. Nothing like 20+ hours immersed in an entirely new branch of legal scholarship! It was a lot all at once to digest, but so helpful. It provided a much-needed preview of things to come so that I could be prepared. I wasn’t looking forward to any of what was about to unfold in the coming years, but at least, after these efforts, I felt like I had given myself a leg up on the potential bureaucracy.
I also continued to keep my promise to Peggy to spend time with her at her apartment. My handy sleeping bag and air mat were more than up to the task. There was one area in Peggy’s living room between the rocking chair and her wine jail where I could fit perfectly, stretched out on the floor. I know it sounds cramped and uncomfortable, but it wasn’t. That little air mat did the job. More importantly, I think my efforts really helped show Peggy that we weren’t “throwing her away” as she once feared. It was also fun to spend time with my sister’s two cats. I’m a cat person, so I really enjoyed helping out with feeding and playing with them during my visits.
But January also brought a few tense situations with my sister that, frankly, left me unsettled.
Towards the end of the month, Peggy asked to go back to our parents’ house to help us sort our enormous family collection of Christmas ornaments and other tree decorations. She knew Les and I had begun packing everything up and purging extra stuff before we put the house on the market. She didn’t like it, but she accepted it, and wanted to be involved in at least part of the process.
We also invited our cousin Nikki over to the house at the same time, because we wanted to give her some of the ornaments and decorations, especially because at least part of our collection had once belonged to our grandparents. I had already checked in with Peggy to make sure this was okay with her. So Nikki, Peggy, and I sat down on the floor and started the sorting process. Les puttered around just a few feet from us. Everything seemed to go well—until it didn’t.
Nikki asked if she could keep a particular decoration (a pretty little silver beaded garland that had been in the family for years) and Peggy immediately had a word salad-y outburst. Nothing she said made any sense, but it was crystal clear that she was very, very angry. When I glanced over at Nikki and Les, I could tell from their facial expressions that both of them now knew what I meant when I told them Peggy had meltdowns. She was definitely not okay.
It was so upsetting for everyone—but part of me was actually relieved that they both finally saw what the worst of Peggy’s meltdowns looked like. Knowing that a person is declining from Alzheimer’s is one thing, and witnessing a full-on dementia meltdown is quite another. Unless you actually see it, you don’t really “get” what it looks like, so it’s easy to live in denial about your loved one. Before this day, I sometimes worried that they thought I was exaggerating.
At least things resolved quickly after that. Nikki immediately said that Peggy could have the ornament back, and just like that, her meltdown was over. A few minutes later, Peggy was acting as if nothing had ever happened. It’s really disconcerting when you experience a meltdown like that for the first time. You’re left wondering what just happened.
Privately, I told Les that I wasn’t ever going to bring Peggy back to the house. It was just too much for her to deal with and, after witnessing the drama about the decorations, I got no pushback from him. It made me sad to think that this was where we were now, but it was a new normal. And each new normal that is in no way normal brings a new level of pain.
Unfortunately, that already-trying day had a few more tense moments in store for me. I got my sister back to her apartment that night just after dinner service had ended. We had eaten together back at the house, so it didn’t matter that we missed the facility’s mealtime, but once in Peggy’s apartment she discovered that she was down to her last half of a banana. Peggy was taking Aricept (Donepezil) and Namenda (Memantine) to lessen her Alzheimer’s symptoms, and half a banana helped her stave off the worst side effects (like diarrhea).
Peggy started to lecture me about the importance of bananas to her, and actually shook a banana at me in anger. I could tell she was headed for another meltdown. In any other circumstance this banana anger would be a hilarious image, but in that moment? I couldn’t get out of that apartment fast enough! I popped down to the kitchen, hoping some staffer was still there and could grab me a couple more bananas. Luckily, I had made it there just under the wire.
I showed up back at Peggy’s apartment with bananas in hand and, again, it was like nothing had ever happened. Her meltdown was over, and she was back in good humor. She was her usual happy self, but all I felt was emotional whiplash. It was exhausting.
The next morning she was still in good mood, but had put her shirt on backwards.
A glass-half-full moment? After everything that happened at my parents’ house, I knew I didn’t have to fret anymore about trying to make another trip happen for Peggy—in this case, Disneyland. Since after 9/11 she traveled by plane very rarely, road trips (especially those within California) had really fit the bill. Peggy was a huge Disney fan all her life, and over the years had visited the park with her friends whenever time permitted. After her diagnosis, she really wanted to go back at least once, but our Italy trip had taken precedence.
At some point before the holidays, however, she had reiterated her Disneyland desires to Nikki and her family, who offered to take her. I expressed great concern, and then downright worry. I told them about Peggy’s meltdowns. I warned them about her growing difficulties with crowds. I explained that Peggy wouldn’t be able to navigate any of it, not to mention her needing to find (and use) a restroom often. They thought they could handle it, but just the thought of the chaos that is Disneyland on an average day made me break out in figurative hives.
But after Nikki had witnessed Peggy’s latest meltdown, Disneyland never came up again.