[TIMELINE: JUNE 2019]
As we headed into summer, Peggy’s two new home health aides, Liz and Felicia, began coming by the house to help her a few times a week. Our family got to know them, and they were as wonderful as Yolanda. Most importantly, they were great with Peggy, and she loved them. I still love them to this day! They prepared food for Peggy that was as keto-friendly as possible and, fortunately, Les didn’t get in their way. And often when I would visit, I would find either Liz or Felicia playing cards or a board game like Monopoly with Peggy—in some sort of special, easy-rules version. That was important socialization for her, too.
After all the food drama earlier in the month, Les and I were back to an uneasy détente, and I hoped it would last until Peggy could move into assisted living in August. At least he couldn’t accuse us of not finding a replacement caregiver for him! One good thing that came out of that chaos was that Peggy really had come to terms with the impending move into assisted living. Her biggest fear was that Les and I wanted to dump her “in a home” so that we could leave her there and forget about her. I assured her that was not the case and that, if she’d like, I’d come and stay with her every other weekend. She thought that was a fine plan, and was definitely relieved.
During this time, Peggy’s cognitive abilities continued to slip. One day when I was at the house, I helped her change the bed. She just couldn’t orient the sheets correctly. I made light of it (“Oh those blasted fitted sheets, such a big pain!”) but I was genuinely distressed. Changing the sheets is not usually a difficult task, but Peggy was not up to it on her own.
To help with medications, we got Peggy a dispenser that seemed fairly straightforward. It even had an alarm to help remind her to take her meds on time. It would have worked—except she could never figure out how to turn off the alarm, so ultimately we deemed it a failure. Devices like that are just one of the cruel jokes of Alzheimer’s. Every time you think you have an answer to a problem, you find that no, you actually don’t. “Solutions” only work if everything goes right.
Also during this period, I spent a lot of time figuring out how best to work with Peggy given her deficits. I kept reading everything I could get my hands on. I wanted to do my best to validate her, and not make her feel “less than,” but I worried I’d accidentally say or do the wrong things.
I spent more time with my therapist, Katy, too. She had a professional background as a social worker helping Alzheimer’s patients and their caregivers. She had also worked on a hospice team at one point in her career, so I felt like I hit the jackpot when I found her.
On top of all of her other insights, Katy was the one who first pointed me to the Alzheimer’s Association and its forum ALZConnected. I initially joined in hopes of learning more from others who were in the same boat as me, but I still participate in the forum to this day.
Spending time reading others’ experiences and comments was sometimes depressing, but I learned so much. Not only did I gain information about potential symptoms, but there was a lot of information about which behaviors to anticipate. Some things I’d already seen—like how Peggy couldn’t make a bed on her own—and some I hadn’t witnessed at all yet, like the many, many discussions about incontinence. I naïvely thought, “oh, maybe this isn’t going to happen with Peggy.” (Ha ha, joke’s on me! But at least I was prepared for it when we got there.)
One issue that came up in many of the articles and comments was that, unless you’re living with the person who has dementia or you see them often, you may not notice the earliest presentation of symptoms. Since I didn’t live with Peggy or see her regularly before her diagnosis, I missed many of the signs of her mild cognitive impairment (MCI). Well, I know that now. But when she was first diagnosed, I actually thought she had skipped the MCI stage. Ha! Again, I was so wrong. I had no clear knowledge at the time how far back her symptoms went.
Later, once I learned that some people experience MCI for as long as seven or eight years before any kind of dementia or Alzheimer’s diagnosis, I asked Peggy if she could remember when she first noticed that something might be wrong or off with her. I was trying to pinpoint the start of her symptoms as best I could—at least within a ballpark range—because I had no idea, and her doctors and caregivers sometimes asked me those questions about her symptoms.
One time when Peggy and I were discussing it, she described a moment back in 2016 (as best as she and I could piece together) when she was driving on the freeway. She was stopped in the middle lane in heavy traffic, in a typical “slow-and-go” rush hour. When the cars inched forward on either side of her, she said it felt surreal, like they weren’t going forward but that she was moving backward. She said her first thought was: What is this?
I tried to figure out what exactly she meant, so I asked her various questions to get to the heart of it. Eventually I hit upon a train analogy. I asked her if it felt like when you’re on a stopped train, and the train next to you starts to move, and it feels like you’re moving too. Or you’re not sure which train is moving, yours or the one next to you. She said it felt exactly like that. I was somewhat alarmed to hear this, but I said nothing and kept up my poker face.
While we waited for Peggy’s new digs to open up, our next hurdle was figuring out a plan for her two cats. Luckily, she would be able to bring them with her to her assisted living apartment and care for them herself, although later she would need some additional help with them.
First things first, though: her kitty Jezebel had hyperthyroidism, and needed to be treated before Peggy’s move. Her regular vet recommended a specialist who offered a treatment with radioactive iodine, so that’s where we took Jezebel. We had to leave her there for about a week during the treatment—and Peggy couldn’t touch her at all when she visited—because the iodine actually makes a cat radioactive for a while! Initially I was worried Peggy wouldn’t understand the complexities of what was going on, but thankfully she did.
And after all of that, Jezebel made a full recovery. I felt so sorry for her that she had to become a little hands-off biohazard kitty for more than a week, poor thing! But I was glad she was healed and could come home to Peggy. What a wild experience that was!
Little did I know then that there would be so many more times ahead when I encountered a situation that I was completely unfamiliar with and needed to handle, even if it was just my sister exhibiting a new strange behavior. I knew I had to adapt quickly or I’d just burn out, so I developed a lot of coping strategies. Sometimes I’d just roll with whatever was thrown at me, sometimes I’d point out the bright spots to Peggy (Jezebel is cured!), and sometimes I’d resort to gallows humor with my partner and friends. My gothic ability to find that gallows humor in these situations almost always saved me and kept me sane during this time.