[TIMELINE: August 2023]
The beginning of August brought a new worrying complication for Team Peggy: literal bouts of screaming, and it was hard to bring her out of them and back to any sort of calm state when it happened. Beyond merely arguing, she had progressed to shouting at objects and shadows and yelling at them to leave her alone, including the persistent hallucination she called The Lady.
Too much noise now agitated her, as did too many people—and “too many people” actually meant any number above three. She was sure other residents didn’t like her, and her best friend Michael thought that she was now afraid of people in general. It was a dramatic personality change, as my highly social sister had spent much of her adult life making friends wherever she went.
Michael also told me that Peggy sometimes didn’t recognize him anymore until he spoke to her, then her wariness of him dissipated and she was okay with spending time together. So that added another layer of concern. Would she stop recognizing him altogether? What about the rest of us?
It seemed that the only thing we could do if Peggy created a scene in front of the other memory care residents was bring her to her room to try to distract her and chill her out, though it was far from a smooth process. And we couldn’t leave her alone there, because if she stood up, she would fall over due to her Pisa syndrome. It was a problem we wouldn’t ever overcome.
The drama of Peggy’s outbursts escalated even further later in the month; according to the memory care director, sometimes Peggy was waking up in the middle of the night screaming, too. This was really not good for Peggy’s wellbeing, and it was certainly not good for those around her.
I did my best to intervene and try to get Peggy some help. Immediately, I set up another 8:30 a.m. phone meeting with Dr. Phan, her geriatric psychiatrist, to see if we could address the problem. I was armed with my strong Assam morning tea and written notes so I could accurately fill her in on what had been happening. We ended up deciding to increase the amount of the trazodone Peggy was taking, which in low doses typically has a very mild sedative effect that relieves insomnia.
We talked briefly about adding strong sedating drugs or strong anti-psychotics, but Dr. Phan and I were leery of them because we didn’t want Peggy to be unable to engage with the world around her. Also, there were other risks to those sorts of drugs. Sedation could leave her in an altered semi-awake state, which could lead to more falls, while anti-psychotics could speed up the progression of her dementia. Dr. Phan wasn’t committed to never prescribing these drugs for Peggy, but she was hesitant, and wanted us to try other things first. I readily agreed.
I wanted Peggy’s moods to be calm, sure, but I also wanted her to still be there with us. Even with dementia, she still had a good quality of life, and hopefully would for many months. I didn’t want to turn her into a zombie person, where she was just sitting there. That’s no way to be.
Dr. Phan and I also talked a little bit about alternatives to memory care, and whether moving Peggy to a small group home would be more appropriate. If Peggy needed to be put on anti-psychotic medications later, memory care might then not be the best place for her. There were pros and cons, of course, especially if we pulled her out of a familiar place with caregivers she loved. Fortunately, Peggy’s memories of those caregivers would recede fairly quickly when she settled into her new place, her doctor noted, so it would likely not be too upsetting for her.
Much as I didn’t like that assessment, I was sure what she said was true. One thing that seems to be common in dementia patients is that newer memories fade a lot quicker than older ones. But I took solace in the fact that Dr. Phan wasn’t suggesting that we move Peggy immediately, only that we keep it in mind. Our choices were bad and worse, but that was the reality of things.
In the meantime, we got Peggy some over-the-ear headphones so that she could listen to her music all the time without annoying anyone. Thankfully, it seemed to help. Honestly, we welcomed any and all strategies to improve her mood and keep everything pleasant for her and her memory care neighbors. But man, I was worn out by all the problem solving. I felt overwhelmed—again.
Looking back, I remember feeling that Peggy’s Alzheimer’s was progressing too fast, but at the same time, I also felt that it wasn’t progressing fast enough. It’s not a pleasant spot to be in, and it really messed with my head. I think you can only really understand this surreal feeling of “too fast/not fast enough” if you’ve been a caregiver to someone with Alzheimer’s.
The AlzConnected message boards really helped me process all of my concerns, as many of the caregivers there had been in exactly the same spot as I was. It occupies this weird space in your head where you wish it was all over, but at the same time you wish your loved one could hold out long enough for a cure. And all the while you are sleep-deprived and overwhelmed.
In mid-August, I had a session with my therapist Katy and updated her on all of this. And again, we tried to figure out who The Lady was. Katy still wondered if Peggy suffered some kind of trauma that had emerged as this angry hallucination. I didn’t see Peggy in person that often, but we had a good relationship—I figured I would know if anything traumatic had happened to her. But I could think of nothing, and I certainly couldn’t name anything from when we were children, either. I even asked Michael about it, because he had seen much more of Peggy than I had over the years since they lived so close to each other. But he couldn’t come up with anything either.
I told Katy how Peggy was now constantly worried that someone was “stealing” me from her, or hitting me, or threatening to hit her. Obviously, none of that was based in reality. Peggy had also been asking me questions about her ex-husband who had passed away some time ago—which I deflected, of course. Katy didn’t think it would be wise to go there with Peggy and neither did I. Bringing him up in any discussion with her would have probably done more harm than good.
After talking about Peggy at length, I also shared with Katy more about my current state of mind. I told her that my partner Jon and I feel like “sandwich people.” Usually that term is used to describe adults who are looking after their parents and their kids, leaving them feeling overwhelmed in the middle. But in our case, we were looking after my partner’s mom as well as my sister. Slightly different situation, yet the same sort of impact. What could we do? Katy assured me that we could handle it, and I knew she was right. We just had to be focused on enduring it.
At least we had a couple of bright spots to celebrate this month. During my next in-person visit down to San Jose, I got to be there for a family Facetime call that Michael set up for Peggy. She absolutely lit up. It was so very nice to witness her so happy. Michael had facilitated similar calls with a couple of Peggy’s friends recently, and those had been a treat for her as well.
Michael and I compared notes on Peggy almost every day no matter what city I was in, but we got to do so in person during this trip, which was fun. I even stayed with him for part of the week, and Peggy got to enjoy a couple of days when we both visited her in memory care, which I know she really enjoyed. The other thing that really helped? Madonna!
Peggy had one Madonna album of greatest hits, The Immaculate Collection, that she loved, loved, loved, and I finally got it burned to CD for her. And, yes, we listened to it a lot during my visit, which resulted in a few kind of a funny moments for me. First, even though I’m fairly familiar with Madonna, there are several tracks on that compilation that I’d never really heard before. Wow! And one song, “Like A Prayer,” I only knew because there’s a popular goth/industrial cover version of it by BiGod 20 that I’ve danced to for years at clubs. All this time, I never realized it was a cover! Once I heard Madonna singing it, though, I thought, “Of course this is her song!” So funny.
I really appreciated all of those little moments where I could have an easy laugh, and I always sought to grab onto any humor I could, either to boost my own mood or to improve Peggy’s. So I could only be amused by what else happened during this visit.
Staff caregiver Rebecca pulled me aside to introduce me to a new caregiver named Michael. Then, she spelled out the word matinée to me and asked me to define the word and pronounce it. I did both. Neither caregiver Michael, nor Angela (the activities director), had ever heard the word or knew what it meant. I was shocked but also pretty amused! They’re both in their 20s! Kids today, I thought. Do we not have matinées anymore? I was kind of afraid to ask if they’d ever heard of matinée idols, so I kept my mouth shut and just smiled to myself.
Later, I told our Michael about it, and we got a good chuckle out of it together. Then, he revealed that the new Michael also got stuck on the word serendipity—he never heard of it, nor could he pronounce it. New Michael is not a dumb guy, but I don’t think he’ll ever be known for his mastery of vocabulary! But that’s okay, because he’s a great caregiver. I know he helped my sister a lot.
I had to leave by the end of the week, which Peggy was sad about, but I really needed to regroup at home, and I was consoled by the fact that I was leaving her in our Michael’s capable hands. However, my drive back this time was not as soothing as usual. The skies over California were becoming so toxic and orange due to a series of wildfires that I had to mask up the entire time. In hindsight, I think it was a strong visual metaphor for some of the chaos still in store for us.
Sure enough, near the end of the month I got another bad call from memory care. Peggy was inconsolable. They put her on the phone, and I tried for 45 minutes to calm her down. Every time I thought I succeeded, she would start screaming again, then crying. I didn’t know what to do. Venus and Nelson, both very experienced caregivers, were in the room, and each would chime in periodically and say something encouraging to Peggy. I hoped they would be able to soothe her if I could not. Eventually, Venus told me that they were going to give her some trazodone and they’d call me back later. But they never called me back, and I took that as a bad sign.
Then Desiree, one of the supplemental caregivers I hired for Peggy, got to memory care at 4 p.m. and sat with her through dinner. I had given her a heads-up on the earlier drama so she went in prepared, and she filled me in afterwards. She told me that Peggy’s mood was better; she was still agitated, but no longer to the point of screaming. Not quite a win—but it was something, I guess.