Bev. Her journey and eventual near total loss.
I don’t know if I’m any more aware of my thoughts of Bev as we approach the second anniversary of Bev’s passing, or if I’m thinking of Bev more as edge toward the end of the month. I think it’s the former. I think I’m just more acutely aware of this pending/looming anniversary date. Like last year, I’ll mark the date across two dates, February 28 and March 1, spanning the mysterious date that actually was the day Bev passed away. That was a long journey for Bev. It ended February 29. It was a moment emblazoned into my memory. I’ll mark the passing of these two day with two yahrzeit candles, one for each day. I’ll be visiting Bev’s columbarium and leaving a yahrzeit there also, and a rose.
I could see Bev’s memory had worsened as far back as around 2005, because by Hilary and Claudio’s marriage in May 2006 I had already talked to Hilary about Bev’s memory, and perhaps even said I thought it was more than memory. But I didn’t in any way expect Bev’s memory loss to develop into something like it it did. I saw it as a concern, but about memory loss, not loss of everything, beginning with memory. That I didn’t anticipate or consider or worry about. But in May 2006 I first saw signs of confusion, and not just memory, when Bev couldn’t figure out a really simple puzzle. What I saw was prescient as it did turn into what it turned into. But I didn’t think that then, that it would last forever and wosen and worsen, or think about what path it might take. I don’t think I saw anything else for a while, and I can only think of one other situation where Bev couldn’t figure how how to use the barbecue, and things developed slowly during the next few years, and by 2012 everyone could see changes. That was the year Bev retired. Things were getting more difficult for her, and most obviously to me in the special education paperwork, which was overwhelming Bev. Kaye saw the change the year before, when Bev and I were in Hawaii in 2011, and I stayed on for work and Bev flew back to visit with Kaye in San Francisco. I had not talked to Kaye about Bev’s cognitive decline before then, but Kaye asked me what was going on with mom when she saw that Bev was having a difficult time figuring out the right bus, even though it was straight forward and additionally Bev had taken that same bus regularly when she and Marg lived together in San Francisco. That’s when I told Kaye. Even then, following a recent hurricane or tropical storm that weekend when flights all over the country were seriously disrupted, Bev was able to take four planes, hopping across the country, to get back home.
By the next year, things were more evident, and when on vacation with Hilary and Claudio, Bev was aware that Hilary was concerned, which upset Bev because of what it signified. Again, this was the year Bev retired, in large part, maybe completely, because the work was getting more difficult for her. It was a new school for Bev as Marks Meadow had closed the previous school year and Bev and other school staff had transferred to other town schools, with a different approach to special ed, and, as usual, lots of special ed paperwork but now updated and slightly different different. It was too much. I remember coming into this very office where I am now, sitting pretty much where Bev was sitting as she worked on these special ed forms, and seeing Bev sort of staring straight through me when I came into the office, her face drained and pale and sort of vacant . I thought this is going to make Bev ill, although I meant it figuratively, but I could clearly see it was cognitively fatiguing Bev. Definitely time to retire. A good decision. Bev continued to teach as a private tutor and did that for maybe three years, and that included kids coming here and Bev going to private homes or schools to provide tutoring. But, over this maybe three years, maybe it was four, things became significantly more difficult, and eventually Bev regretfully gave up tutoring. It just wasn’t possible.
The decline continued to be gradual until maybe 2019, although becoming both more noticeable and more limiting, until maybe 2019. I kept a record of concerning events and medication changes starting in January 2013, but didn’t keep, or want to keep, a journal of the decline as it unfolded as that seemed sterile and observer-like, and perhaps also because I didn’t want to write all that stuff down. Now I wish I had, as it’s difficult to get the chronology right and the steadily declining phases of decline through which Bev passed. I don’t want these to be lost to time.
In 2013, I started to write down physical events, starting with a few episodes of slurred speech and a twitching lip in January and February and then in November year when Bev parked the car in an unfamiliar place, at Baystate Hospital, but then couldn’t find the car and wound up walking for quite some time in the cold before finding some shelter and being able to reach me. Both the slurred speech and the loss of the car, which we found after looking for perhaps 90 minutes,we re concerns. Bev burst out crying when we found the car. I think it was after this Bev decided she was not going to drive anywhere except locally, but here I may have the timeline wrong. Maybe that was later as Bev was still driving probably until maybe 2019. Bev should have stopped driving long before she did, and actually did have three small accidents, but could have had far worse. I never wanted to tell Bev she add to stop doing things, although I also knew this was very irresponsible because had Bev caused serious damage or injury to herself or anyone else I would be morally, and perhaps legally, culpable. I didn’t have the heart.
Because I didn’t have the heart I always hoped Bev would make each of the decisions that continually, with each decision, made Bev less independent and each of which signified the further development of her loss. Because I didn’t have the heart, we also never really talked about what was happening. We addressed it and dealt with it and came to cooperative decisions, but we never really talked about what was happening. The word Alzheimer’s was forbidden in our conversations. If we had to refer to it, we used the “A” word. Alzheimer’s not only robs you of everything if it goes all the way to the end, as it did for Bev, but you also fade into. As you do, you are enveloped by Alzheimer’s and you fade away as the world around you fades into vague background. There’s never a goodbye or final words of love, as by then there is no way to communicate, and pretty much unaware, or very close to it.
None of us recall when it was that Bev got lost driving back from Montclair, after visiting with everyone. It may have been pre-2013 when I started keeping that record of events, but after that Bev decided to not drive anywhere further than the Holyoke Mall. With that decision, Bev’s world was starting to contract. Jump ahead, knowing that Bev was increasingly diminished from 2012 on, to early-mid 2020 when the pandemic seized and restrictions were enacted. By December 2018, Bev could only scribble her signature, and even then with great difficulty. We saw Mark Albers, a physician who specializes in Alzheimer’s research, and he was he first to utter the word and actually make the diagnosis of Alzheimer’s, which devastated Bev as she heard him say it. Driving back from Boston was like a morgue. Like hearing a death sentence, and for Bev something she had tried to deny to herself until then. She said she had hoped it was a condition that could be improved. In itself, that was a reflection of how far things had developed, as Bev could not understand the depth of her difficulties and loss. In fact, Bev’s cognitive skills had declined significantly as far back as late 2011, and she had testing in February 2012, which I guess we must have pursued and paid for. Even by then Bev’s cognitive skills were split, with language skills intact but other processing and memory tasks seriously weak, falling into the low end of the developmentally impaired range. Her higher functioning skills continued to decline, but slowly, over the next eight years.
After Bev hit a car in the parking lot of her fitness studio in May 2018, I began driving Bev to the studio for classes and soon after the owners (whose car Bev hit) asked that I stay in classes with Bev to help ensure her safety. Eventually, they asked that Bev no longer attend, and we instead started to attend Planet Fitness together, which we did until early 2020 when pandemic restrictions were put into place.
Bev had been volunteering at Wildwood, where she taught for only two years before retiring, since 2012, starting right after she retired. In the eight years until the pandemic, from 2012-2020, teachers and staff had seen Bev’s steady and relentless decline. Bev moved from being an experienced recently retired special education who, as a volunteer, helped to mentor a new special education teacher and actively assisted another special education teacher, to a volunteer for whom the school was really providing a service of support and act of love rather than the other way around. It would have to have ended in 2020, at the end of the semester as it was more and more difficult for Bev, but the pandemic stepped in to end Bev’s role as a volunteer. But by late 2018 or early 2019 I started to drive Bev to her volunteer work at the school, two mornings each week. Bev never knew that Nick, the principal of Wildwood but also a co-worker and work-friend of Bev’s from Marks Meadow since 1993, called me to say that Bev could no longer drive herself to school as her driving was dangerous. I never told Bev, who I think would have been so mortified that she would never want to to return to Wildwood. Somehow, I don’t know how, I managed to head the conversation in the right direction, without discussing Nick’s call, and Bev said she had decided to not drive again. Phew. Both because that was safe, finally, no thanks to me, who lacked the heart, and phew because it was Bev’s decision, from her mouth, and also because she never learned about Nick’s call. But this was the last nail in Bev’s shrinking world of independence. Bev just took it in, as she did everything.
I’m not sure when, but I think maybe the summer of 2018, but it could have been 2017, Bev went a speech therapist who did occupational therapy with Bev twice a week. It was then that I realized the profundity and depth of the decline. Bev could not complete puzzles designed for 2-4 year olds, or if she could was usually unable to easily solve the puzzle again, or solve it at all, even immediately after solving it once.
By February 2019, by the time Bev saw Dr. Albers, she was already unable to write, had increasing difficulty tracking letters and reading overall, and was disabled, at least mildly but increasingly so, in most aspects of daily living. That grew to almost total loss of ability to take care of activities of daily living by mid-2022, but there was a faster and more noticeable decline during that three year period than during the seven preceding years. At one point in late spring 2022, there was was a noticeable decline in functioning in just a two-week period.
To be continued…