[TIMELINE: January–February 2024]
When I got back home after my mid-January visit, I updated my therapist Katy on what had been happening, and asked her to give me her take on everything. We had a good discussion, although I had nothing good to report. I was almost overwhelmed with navigating hospice—there was so much to know and process, and there were so many drugs now prescribed for my sister. Her healthcare provider, Kaiser, would even text me updates; recently they listed out ten different medications for her. It was a lot to keep up with, but I was relieved for all the extra care for Peggy.
I loved that Peggy was getting so much more attention. Not only was she surrounded by skilled caregivers and support staff, but hospice also provided so many resources. They acquired for her the promised new hospital bed and padded wheelchair, plus they provided better incontinence products. That was one more thing I didn’t have to keep track of, which I appreciated. In fact, the new products had arrived not long after hospice had come on board back in early December.
After filling in Katy on Peggy’s latest symptoms, she confirmed what I saw when I last visited, and what I had discussed with the hospice social worker, Cristina. Peggy was undeniably in Stage 7 of her dementia progression, probably somewhere in the middle of it. I struggled to comprehend that she had now reached that stage, even though I could see her decline with my own eyes.
I really valued Katy’s judgement, since she had a lot of experience helping Alzheimer’s patients and their caregivers over the years. She had even been a hospice social worker earlier in her career. So when she noted that the hospice team we had put in place for Peggy—a registered nurse (RN) or two, a social worker, and a chaplain—was the norm, it made me feel like everything was being handled properly, and I was glad for that. I also felt like I was getting the inside scoop.
Near the end of January, Peggy’s best friend Michael shared with me some more details about her continued struggles with mealtimes. Apparently, things were not going well. Earlier in the month, Michael had begun experimenting with hand-feeding Peggy, just in case he could get her to eat a few bites. Sometimes it actually worked. But for some reason, she had since become confused about whether or not her mouth was open! That was a frustrating new development.
As Michael described it to me, “Peggy was very annoyed with me today. I had to ask her many times to open her mouth so I could put the food in. She would immediately tighten her lips shut. So I would say, ‘let’s wait until you are ready and we’ll try again.’ She finally got angry and snapped, ‘I am doing it!’ So I think she believes she is doing it correctly, even when she isn’t.”
Peggy was also having chewing issues, Michael said. He would put a little food in her mouth, and she would say, “What do I do with it?” He would tell her to chew and swallow it, but she didn’t understand how to actually do that. We had been having success for weeks with her eating the spaghetti sauce we had made (with its tiny meatballs and sausage pieces), but those wins were no longer evident. Now, there was just a lot of “opposite behavior,” as Michael put it.
I could definitely relate to what Michael was experiencing. I had also witnessed once or twice Peggy with a piece of food in her mouth, asking, “now what do I do?” It was so weird.
By January 30, the situation had reached absurdity. “Today, she held one piece of sausage in her mouth for 45 minutes!” Michael said. “I tried telling her many things: ‘Chew it. Swallow it. Push it to the front so I can take it out.’ A couple of times she worked it to the front, but she would close her mouth when I got close. Needless to say, that one piece of sausage was all she ate today.”
What an ordeal! Thankfully, not every moment with Peggy was a complete disaster. Despite her issues, Peggy did manage to drink an entire (small) glass of water during lunch that day, with Michael’s encouragement. Then, after a short nap, she was in a pleasant mood and seemingly lucid—at least for a few minutes, according to Michael.
“She woke up about 1 p.m. and I told her that I was going to leave, but I would see her Saturday,” Michael explained. “With a totally normal face, in a totally normal voice, in a totally Peggy way, she said, ‘okay!’ and meant it, with a smile. It was like nothing was wrong at all! She has not done that in months. It was great!” I really liked hearing about moments like that.
But I knew the situation was still pretty dire. At the end of the month, I spoke with Stan, the hospice RN serving as Peggy’s case manager. He again gave her just a month to live if she continued not eating and drinking very much. That was the trajectory she was on, he said.
I immediately called Dodie, Peggy’s oldest friend, to tell her the devastating (yet foreseeable) news. But I decided to wait to tell Michael, so we could speak in person during my next visit.
A few days later, Stan told me that I should start “making arrangements.” I did not want to hear this (or do this), but I called the local mortuary to make an appointment for when I got into town. Stan also said that we should come to visit more often, so the members of Team Peggy began doing that, too. That meant my usual week-long visits once a month were now off the table; the new normal was that every week and a half, I would come down to San Jose and stay for a few days each time. It was a haul for my partner Jon and me, but we did it. How could we not?
My next visit began February 3, and by then I was already fretting that Peggy didn’t even have an entire month left given how she looked. She had deteriorated so much. The next day, I met with Stan in person. Les and Michael also attended, at my invitation. I was glad they were involved. I was sure they wanted to speak with Stan, and I wanted to include them to the extent that they wanted to be included. Sure enough, they both wanted to be there, and they both had questions.
I started to feel a sense of urgency about making sure I had all the “arrangements” in place. So my other appointments during that visit included meeting with Angel (the mortician) at the local funeral home, and with Claudia (the director) at the cemetery in Hollister, CA where our relatives’ niches are located. I knew this planning had to be done—but I hated every minute of it.
The only nice (and unexpected) thing about my administrative efforts that week was finding out that Peggy’s ashes could be placed in the same niche as our Aunt Rosie, who had died in 1996.
It turned out I “owned” our favorite aunt’s niche because I paid for it when I administered her estate years ago. Who knew? Not me, that’s for sure. So it was a surprise, but a welcome one. It gave everyone in our family a sense of relief that we all knew where Peggy was going to be.
That evening, I leveled with Michael about Peggy’s status, and told him that it was likely that she had only about a month to live—or possibly even less. I also told him where I had been that day: to the funeral home and the cemetery. I knew he needed to hear the truth from me, but I still felt terrible saying it. I swear it felt like I was kicking a puppy, on purpose. At least I was around to offer him some comfort after that conversation, as Jon and I were staying at Michael’s house.
It wasn’t likely that we could prolong her life, given how little she was eating. But we all wanted to do what we could to support her in the meantime. We considered puréed food, but that idea went over over poorly. Peggy simply wouldn’t eat it at all. And I couldn’t blame her! Who wants to eat a blenderized turkey sandwich? Exactly no one. But if we offered her more solid food, it seemed like she couldn’t remember how to chew it. So it was a lose-lose situation.
So protein shakes became our go-to option, and it was a team effort to make that happen. First, there was my trainer Mike at the gym, where boxing/kickboxing had been helping my sanity a lot during my sister’s illness. I had mentioned to Mike that we were trying to get Peggy to drink Ensure, and he replied, “That stuff is nasty. She should try Boost.” He told me that Boost is similar to Ensure in that it has a zillion calories, but it tastes better. Little did I realize that while we were talking, he was ordering a case of chocolate Boost to be sent to my house. He’s a wonderful guy.
Next, I brought that case of Boost shakes to town on my next visit, and Michael got them all labeled for me and took them into memory care. Lastly, my sister’s friend Janelle (a.k.a. the Peggy Whisperer) somehow convinced her to drink them, usually in the mornings. Go Team!
Janelle actually came by quite a few times, which was wonderful for Peggy. She definitely had a way with her, hence the nickname. Peggy and Janelle had been friends since 6th grade, so there was a long history there. Plus, Janelle made jokes and Peggy laughed at them, which was great. She also made sure to tune into the ’80s music station on the “Alexa music ball thingie” (as I liked to call it) that memory care had put in all the residents’ rooms. The best part was that Peggy would occasionally hum along with the songs on the radio, and we encouraged that.
Overall though, Peggy tended to sleep a lot more during this time, which made sense given her medications and the fact that she was barely eating and drinking. But Michael thought she looked pretty good, relatively speaking. Her color was good, and her breathing was even. I saw the same.
Our brother Les came by regularly in early February, although I heard that his most recent visit, on one of the days that Michael was there also, was pretty uneventful. He again called Aunt Betty so that she and Peggy could talk on the phone, but Peggy was just so sleepy! So that call didn’t work out as well as previous calls. But it was nice that he tried—and I know Peggy appreciated that he continued to visit, that he continued to make the effort for her.
And of course, Peggy always had the familiar faces of Liz and Desiree, the private caregivers I hired for her, to stop by memory care when none of the rest of us could make it.
A few days later, not quite mid-February, we all began noticing another big physical change in Peggy: she was having trouble holding her head up, and she seemed unable to sit up straight. She even slid out of her wheelchair again, due to her slouched positioning. Her head was actually drooping when she was in a seated position, with her chin resting on her chest.
My guess was that Peggy had now reached Stage 7d, where a person with dementia (PwD) can no longer sit up independently. I also believed that I was seeing some mild Stage 7f behaviors, which meant that soon she would not be able to hold her head up at all. I agreed with the hospice nurses: We were approaching the end. And by this point, I was actually hoping we were nearing the end, because it was horrifying to learn that a PwD can live indefinitely once they get to Stage 7f. I didn’t wish Peggy dead, but I did not want her to be in her current state for potentially years.
Honestly, I didn’t even know how to think about any of this. Did I want her to rally? Did I wish for her to stay as long as possible? No. I never wanted her to suffer, and there were moments when we were all painfully aware that she was suffering. So, should I wish her a speedy end? Well, no. But in those rare moments when Peggy had clarity, she was unhappy and afraid. She even told me herself that she knew the road she was on. All I could do was steel myself to walk it with her.