[TIMELINE: 2018]
Once we knew something was wrong with Peggy, we spent the first half of 2018 putting the pieces in place to get her tested and diagnosed. My sister was lucky in that she had great medical care through Kaiser, particularly after we replaced her primary care physician. That first doctor had said Peggy was “slow.” This was not okay! I was offended on her behalf. I’m sure any mental delays that doctor may have seen were the early symptoms of Alzheimer’s, but she didn’t do any tests to determine what was going on with Peggy. I was unimpressed.
Peggy’s new primary care physician was great, though, and we made sure to keep her involved throughout the course of Peggy’s illnesses. We experienced the occasional glitch meeting her medical needs, but for the most part, I was happy with her care.
From February through June, we set up appointments for Peggy to get a CT scan, an MRI, blood tests, a PET scan, and a trip to a neurologist. The CT scan was the only test scheduled before the neurologist, and I hoped it would be useful for that appointment.
At this point (May 2018) Peggy was still driving, and I remember following her on the freeway to the neurologist appointment and being concerned at what I saw. She weaved all over her lane. She managed to stay within the lines, technically, but I could see that her driving skills had deteriorated quite a lot. After that, I accompanied her to most of her appointments (and took over the driving). I think the only appointment she did on her own then was the blood test.
The results of the neurologist appointment were concerning, but ultimately left us with more questions than answers. Our cousin Nikki was with us for moral support, and she and I stayed in the waiting room while Peggy was tested. It was a lengthy process. Afterwards, the neurologist called us in and, with my sister’s permission, gave us the results. He was baffled.
He told us that most people fail one type of test but not the other, and they don’t fail both. He was light on the details, but clear about his biggest concern: Peggy had failed both.
In fact, Peggy had failed just about every test she had been given, but at the same time her overall cognitive function was still high, he said. There are several screening tools that test cognitive functioning, such as the Montreal Cognitive Assessment (MoCA) and the Mini Mental State Examination (MMSE). I can’t remember which particular tests Peggy was given that day, but most involve simple tasks such as drawing a clock face, counting down from 100 via 7s, listing all the words you can think of that start with the letter “f” in a specific amount of time, and connecting the dots between points A1, B2, C3, D4, etc.
Based on Peggy’s mixed results, her neurologist wanted her to have an MRI and a PET Scan as soon as possible, so we scheduled both for July. It was daunting. My sister was determined though, and we wanted to get to the bottom of what was going on with her. The PET Scan was important because it shows where the brain is absorbing glucose, and where it is not. In Peggy’s case, the frontal and temporal lobes were dark—no glucose absorption. That meant the critical thinking parts of her brain were being starved of necessary nutrients.
Finally, on August 16, we got my sister’s full diagnosis. Again, Nikki and I went with Peggy (at her request) to get the results. The doctor had been very thorough. He had called several of his colleagues together to look at the results of all the tests. As a team they determined that my sister had early-onset Alzheimer’s Disease and frontotemporal dementia (FTD), which also included primary progressive aphasia (PPA) of the logopenic variety. He told us that the logopenic variety was the rarest of the rare.
We were all stunned—and Peggy was just beside herself. She didn’t know what to do next. Was there anything that could slow down the progression of her disease? What did progression even look like? She was just 58 years old at this time.
Like Peggy, I was also worried and so I started reading about Alzheimer’s, FTD, and PPA. I began to understand why Peggy kept forgetting words and substituting other words for more common ones—it was the logopenic PPA. She was already exhibiting signs of anxiety, irritability, and agitation. I saw that back in January when my brother and I had the argument that set Peggy off into an emotional spiral. And Peggy’s reading and writing were already both impaired, as I saw that one day at the bank, and that also was the result of the PPA.
If FTD and “aphasia” sound familiar to you, it’s probably because Bruce Willis was diagnosed with these diseases.
The knowledge that I was gaining was not at all comforting, so by the end of August, I found myself a therapist. I chose well. She had been a social worker prior to becoming a therapist, and as a social worker she worked with Alzheimer’s patients and their caregivers.
Also around this time, Peggy suggested that she be tested to find out if there was a genetic reason for her diagnosis. She was still able to make decisions for herself at this point, so I followed her lead on this. I contacted the Memory Center at Kaiser and arranged a test for October. (Which came out negative, except for one area that was inconclusive.)
I also initiated the first of several conversations with Peggy about various legal matters we would want to tackle within the next few months, especially a durable power of attorney for medical and financial decisions. I knew it was important to get our legal ducks in a row as soon as possible, because a person with dementia (PwD) needs to be able to understand what they’re signing, and understand the implications of such documents. They must be “of sound mind.” We also planned for me to meet with representatives at Peggy’s bank soon, while she was still cogent.
Later, once we began to get our bearings, Peggy and I talked about how we would try to navigate this journey together. Because of her fear of what was to come, we developed a “don’t ask, don’t tell” kind of policy. If Peggy didn’t initiate discussion about a particular symptom, I wouldn’t spontaneously bring it up. If she asked me, “Is this an Alzheimer’s thing?” only then would I say “yes” or “no.” We used this strategy essentially for the duration of her disease.
Unfortunately during this time, my brother Les began acting out. There was one memorable incident in October, where the police were called to the house to defuse a tense situation of Les’ creation. Thankfully it all worked out in the end and no one was arrested. But his meltdown—and the meltdown it sparked in Peggy, too—was severe enough that it made me realize I had to start thinking about getting my sister out of that house.
I wasn’t worried about her physical safety, but I was worried about the stress he caused her, and the effect that could have on her cognition. Any time that Peggy was triggered into an emotional meltdown, there was a big risk her cognition would take a hit. And as her disease progressed, there was never a guarantee that she would return to baseline afterwards.
So around this time, I worked to convince Peggy to come with me to tour a few assisted living facilities and memory care centers that were local to Hollister or San Jose. At first she wanted no part of any of it, but eventually she realized I had her best interests at heart and she relented. So in November we toured around, and we found a couple of places that looked like good possibilities for her.
In the meantime, Peggy began going to the YWCA with our aunt for some healthy gym time, and she also kept up her singing with Oriana, a local chorale group she joined just prior to her retirement. I worried that the weekly rehearsals and seasonal performances would be difficult for her because it meant driving at night (which was a really bad idea), but she was able to arrange rides with friends, thankfully. Whew! Crisis averted. And one of her favorite activities, of course, remained relaxing with her cats; she’d cozy up with them and watch The Walking Dead and General Hospital regularly. So at least some things stayed the same for awhile.
As the holidays approached, Peggy was driving less and less, so Nikki and I took turns driving her to doctor appointments, while Les took her to choir activities.
One shocking thing happened during this time. Peggy needed new glasses, so Nikki took her to the optometrist. During the exam, the doctor found that Peggy was wearing her contact lenses, but she didn’t know it! We have no idea to this day how long those lenses had been in her eyes. She was incredibly lucky that there wasn’t any lasting damage. But we realized that this was probably what had happened during the neurology exam—Peggy had ancient lenses in her eyes and probably couldn’t see most of what was written on the page. We asked about redoing the neurology exam, but since her doctors felt that we had a good diagnosis, and that it was highly unlikely to change in spite of the contact lenses, we decided against it.
There is a lesson to be learned here—your PwD probably is less capable than you realize. Both Peggy and I had worn contact lenses since we were in our twenties, and it never occurred to me that she would forget to take them out for months on end.
Thankfully, the situation with my brother calmed down. He agreed to enter a mediation agreement with Peggy and me so we wouldn’t fight any longer about the house or our parents’ estate. I hoped it would stick. Peggy was still pretty good mentally at that point.
In December, my partner Jon and I planned a much-needed respite. Given the stress of the year, we decided to go to Europe while we still could. We filled the trip with music. We had always wanted to see The Men They Couldn’t Hang, a British folk-punk group we’ve loved for decades. They don’t really tour the states, so this was our golden opportunity. We also managed to visit Berlin just in time to see Corvus Corax‘s annual Christmas concert. It was held at the Passionskirch, a gorgeous church and perfect for their show. Esoteric bands to many, probably, but essential music (and much-needed comfort) to us.
It was also the last true vacation we’d take until June 2024, about three months after Peggy died.