[TIMELINE: December–January 2024]
As the new year loomed ahead, I was dealing with a spectrum of conflicting emotions—including dread of the likely bad moments we’d experience in the weeks to come, determination to preserve the highest quality of life for my sister until the end, relief that hospice professionals were now in charge of her care, and gratitude that she had so many people in her life who loved her.
Like our brother Les, who visited her the week after Christmas despite stricter visitor rules in memory care due to a Covid-19 outbreak in the assisted living side of the building. That meant face masking, which Les was never big on; usually he would just skip places where masks were required. But he cared about Peggy, so for once he actually cooperated.
I know Peggy enjoyed his renewed involvement in her life in the past few months—after not visiting her for nearly two years—but on a personal level, I was especially appreciative of it that week because I wasn’t able to visit Peggy myself. I had cracked a tooth and needed a crown, which takes multiple appointments. So I was stuck in Washington for a while attending to that.
Liz and Desiree, the private caregivers I hired for Peggy, helped a lot, ensuring Peggy always had visits from friendly faces even if friends or other family members couldn’t stop by to see her. It was important, because the more human interaction she had, the better her wellbeing.
Of course, Peggy had her best friend Michael, too; he unfailingly continued to visit her about every other day, just as he had promised me that he would. He and I had become strong partners in caring for Peggy; we were constantly collaborating and strategizing on how to make things easier or more comfortable for her, and on little ways that we could bring a smile to her face.
Our most pressing concern now was Peggy’s dramatic weight loss. Food had increasingly become a hit-or-miss proposition for Peggy. Sometimes she could be coaxed into eating the barest minimum. Other times, nothing at all. So Michael and I decided we would try to combat Peggy’s low appetite armed with homemade spaghetti sauce. We hatched a plan that we would make a huge pot of it together at his house during my next visit in January. Surely Peggy wouldn’t refuse non-spicy homemade sauce made from our family recipe? All we could do was hope.
In the meantime, I was able to Facetime with Peggy before New Year’s Eve, and Michael had another good visit or two with her where he was able to make her laugh. Small wins!
Then January finally rolled in—a new year, with new horrors waiting for us. I hated that we seemed to be in a perpetual state of awful, but that’s honestly where things were at this point.
Right away, we reached another sad milestone with Peggy: We concluded that she was done with the dentist forever. All her life, Peggy was one of those weird people who loved to go to the dentist and get her teeth cleaned, and she always took great care of them. So we had an appointment scheduled for her on January 4. In hindsight, that was madness. What were we thinking?
Fortunately, Michael and I came to our senses a couple of days before he was set to drive Peggy there. He didn’t think he could safely transport her there and back anymore, because now she couldn’t walk and she could barely stand. She was dead weight and incredibly hard to maneuver. He was terribly worried about these logistics, and I know he must have been stressing out about it all day because he messaged me at 2 a.m., which is really out of character for him. I’m a night owl, so I email people in the middle of the night all the time. But Michael is always in bed by 10 p.m. at the latest, so when his email popped up in my inbox, I knew it could only be bad news.
I didn’t want to make a rash decision, so the next day I ran it all by hospice staff first. And when they agreed with Michael’s assessment, I knew that was that. It was a very sad decision; I felt terrible that we couldn’t keep up with Peggy’s dental hygiene, but it just wasn’t safe for her.
On the bright side, the day wasn’t wasted. Michael visited Peggy anyway, and he reported back to me that they had a pleasant afternoon together. I can only assume that staying put in memory care—and not attempting a likely disastrous road trip—was a big reason for the day’s success.
Another big change around this time was that hospice staff had begun coming by to help Peggy once a week with showers, because she couldn’t safely do that on her own either.
Apparently, Peggy’s weight loss had made her a lot more fragile, which was confirmed by Liz when I next spoke to her; she also told me that Peggy had officially now lost 60 pounds. I knew she was dropping weight, but I would never have guessed it was that much, as I’m not that good at determining people’s weights (or ages). Hearing the precise number was a bit of a shock.
I Facetimed with Peggy later that same day, and saw for myself just how fragile she really looked. We had video chatted only a week before, and I had been with her in person not that long ago, but once a person with dementia (PwD) starts to spiral, they really spiral. Even from week to week, Peggy’s physical transformation was becoming more and more severe. At least our call that day was a good one; that was the kind of comfort I clung to in those days.
The next day, hospice staff called me to confirm that they had ordered a new wheelchair for Peggy, one with additional padding to keep her securely fastened. This was because Peggy would slide down and nearly off her transport wheelchair sometimes; she even fell off completely once!
Thankfully, she wasn’t hurt; in fact, she was so sleepy when it happened that I don’t think she even realized that she fell. It was yet one more time during this journey of Peggy’s illness where our choices for her were between something bad and something worse.
Always, there were tradeoffs. Peggy’s new drug regime dramatically cut down on her screaming, which was good. It meant she wasn’t in too much distress, and she wouldn’t upset any of the other residents memory care. But it made her much more sleepy, and that increased her fall risk by a big margin. So on the one hand, we could have had a more alert Peggy, accompanied by screaming, yelling, and hallucinations. On the other hand, a calmer and more relaxed Peggy, but with such a potential for falls that they weren’t just possible, they were likely to happen. Pick your poison! Obviously we opted for the meds—but did we really have a choice?
As a result, those strong doses of Seroquel and other meds meant Peggy was sleeping a lot more since my last visit, according to Michael. Actually, she was sleeping more than ever, he said, and any social exertion tired her out quickly. I knew the meds could do that, but still it was the only option for Peggy, and for us. I was just sorry that that was where we were.
About a week into the new year, Les came by for another visit with Peggy. Again, he called Aunt Betty while he was there and put her on the phone to talk to Peggy. But Peggy spoke only in whispers, so Aunt Betty couldn’t hear her. Peggy had begun speaking this way a week or so earlier; you had to get very close to her in order to hear her, and even then it was hit or miss.
It was bewildering, and a little strange to witness, but I had read that this sometimes happens at the earlier stages of Alzheimer’s, so I considered us lucky that it was only happening now so late in the game. I don’t know why PwD end up speaking this way, but I had heard from so many caregivers on the AlzConnected forum who had experienced the same thing with their own PwDs.
But Les was more than willing to translate Peggy’s whispers as best he could, so she and Aunt Betty were able to have a real conversation. It made Peggy happy.
Shortly thereafter, Peggy had another good day, perhaps even a wonderful day, and that was something to celebrate. Every once in awhile, Peggy would have a good morning or a good afternoon or even just a good hour, however we were able to define “good.” And we enjoyed each and every one of those moments, because who knew how many more of them we would get?
A few days after visits Peggy’s visits with Michael and with Les, I Facetimed her (with the help of Desiree) and we had a bona fide fun time together. She looked and sounded better than she had in awhile. She laughed at my bad jokes, and was happy when I told her I’d be there in a week.
However, Peggy was still fragile, and she had begun complaining of being cold much more frequently than before. It persisted, but I couldn’t figure out why. Was it her new meds? Maybe it was because she wasn’t getting enough food into her? I know that when people are transitioning from life to death, they lose the ability to regulate their body temperature, but we weren’t there yet.
Whatever the reason, I made a note to pack one of my warmest sweaters for Peggy, to bring her at my next visit the week of January 15. It was one of those sweaters I only wore on the coldest of cold days. I have no idea what that magical knit was made of, but it always kept me warm even though I run cold most of the time. I gave it to her the moment I got to memory care—and she ended up wearing that sweater quite a lot in her last few months. I hoped it had done its job.
Also right when I got into town, I had a meeting with the director of memory care, who reiterated that Peggy wasn’t eating much at all. She was mostly just drinking Ensure, with cranberry juice sometimes. But I knew that Peggy was still able to chew and swallow, so I was at a loss as to why she wasn’t eating real food anymore. Why was her appetite so bad?
I also met with some of the memory care staffers that week, and later with the hospice staff. I had so many questions for them. Could we get Seroquel in a patch? No. Should we move to puréed foods? Yes. How long should we let Peggy stay in bed? It’s complicated. And so on and son on.
One thing that was particularly frustrating was that some memory care staff seemed to still be l confused about ice cream versus sorbet. I knew they were worried about Peggy being lactose intolerant and didn’t want to accidentally make life more miserable for her, so I guess they weren’t offering her frozen desserts that often. But it was such a stupid situation.
Peggy’s lack of appetite was serious. I believed that staffers should always be offering her dessert, just in case it tempted her to eat something. They needed to know that Peggy could have as much sorbet as she wanted, which I told them firmly. Really I just wanted to scream, “Write it down, people! This is not hard! Ice cream is milk-based and sorbet isn’t.” But I showed some restraint.
Looking back, perhaps I should have gotten a little loud. Because later in the week, one of the hospice nurses told me that if we couldn’t get Peggy to eat, she would live for only about one more month. Objectively, I knew the score. Once we got to the point of needing hospice, I knew it would only be a matter of time. Still, it’s one thing to intellectually know where you stand, and quite another thing to hear it out loud. I accepted it as fact—but it was a punch to the gut.