Episode 8: How Did You Know?
Season One Final episode
This is an ongoing series chronicling our experience with Alzheimer’s — previous “episodes” are available to read in chronologic order.
I recently did a virtual presentation for the Alzheimer’s Association New England Conference that was geared toward professionals and caregivers: “Our Lived Experience as Two Healthcare Providers.” I painstakingly selected excerpts of our 6-year journey to present over 45 minutes. I’ve written about some of what I presented in this publication. Most of what I presented will be expanded on in subsequent seasons and episodes as our journey continues. When I publicly discuss our experience, some of the most common questions are, “How did you know…What were the signs…I’m getting more forgetful, should I be worried?”
This episode takes us back over a period of time before her diagnosis, highlighting examples of red flags that are so much more apparent in retrospect. As these events unfolded, the disease termites remained unseen, burrowing their way, eventually taking down her house (body) until her roof (brain) caved in.
6 years prior to diagnosis: D has started having this unexplained anxiety being a passenger while I was driving. She blamed it on an accident she had 24 years ago in which she got some bad bruises, but no serious injuries. That seemed like a stretch, but I didn’t challenge it. Over the next 5 years she would have such dramatic episodes obsessing over the speedometer, bumps in the road, and distance between cars, that there were times I had to pull over to see if she would prefer driving — a few times she did, but mostly she insisted that I just drive safe. This got to the point where I would reconsider road trips and went out of my way to have another passenger to distract her. What made this even stranger was that she didn’t seem to have anxiety in other situations, including flying. The irrationality of it was mind-boggling.
I have no idea and will never really know if this was some precursor to her Alzheimer’s. I do know that once she was diagnosed and retired from work, she forgot about her car anxiety (a disease silver lining), and we enjoyed many road trips those first two years post-diagnosis.
Week negative 152 (prior to diagnosis): D is enrolled in a hospital sponsored Master’s in Healthcare Administration program with a local university that has 3-hour evening classes at the hospital two days per week. It’s a lot of work on top of her actual job, but after 32 years in nursing and having held high-level managerial positions, getting this Master’s is overdue. The problem is that she’s having unexpected difficulty writing her papers. Historically, she’s been a straight-A student and has had incredible success managing people and creating clinical workflow systems and protocols. Now she was struggling being able to say or write what she was trying to express in a clear and concise manner. So naturally I helped her. At times it felt like we were publishing a paper and she was my co-author. She graduated with a 3.8 GPA. We openly joked that I got my second Master’s as she got her first.
Week negative 116: I hope D finds her glasses today. It really put a damper on the nice evening we were having after I took her shopping at the outlet mall and stopped at a new place for a cocktail and light dinner. She ran into a nurse she worked with 25 years ago. They always liked each other and got together when our kids were young. But, like so many of these casual friendships, they didn’t stay in touch. We felt like we’d be getting together again — like new old friends, a theme I keep on the back burner as our busy lives unfold.
D’s glasses were on the chair next to the bed, under her PJs that she wore to go outside with a flashlight to frantically search all the improbable spots in the car where logically they could not have been.
Week negative 48: D had one of those fancy work dinners with some of the oncologists she works with, sponsored by a pharmaceutical company. There is the obligatory science-based presentation that provides rationale for whatever chemo related drug that they are marketing. This one took place in a local upscale steakhouse. D’s go-to tends to be filet mignon cooked medium, not too rare (she has a genetic predisposition to overcooked meat). And she is a devout white wine drinker. She works incredibly hard and deserves to get treated to a special meal like this. So when she came home and told me she had the tuna and red wine, “That was really good,” I was totally befuddled. The only seafood I’ve seen her eat in 30 years has been scallops, an occasional shrimp and crab cake, and my Italian fried flounder (preferably fishamajig style between a grilled cheese on rye). I would have never thought she’d try raw in-the-middle seared tuna. And I’d never seen her ask for or order a glass of red wine.
One of the great ironies of her Alzheimer’s that became more apparent after her diagnosis is that she would forget what she liked and what she didn’t like. Some foods she stopped eating altogether, while others she discovered and enjoyed. I did enjoy having a red wine partner to help not let an open bottle go to waste.
Week negative 40: We’re not having the type of disagreements or arguments that we’ve had before. Although those didn’t always make sense (to me), I understood (usually in retrospect) what things bothered her. But lately she’s been upset about me in ways that don’t make any sense. Some arguments are stuck in a perpetual cycle of irrationality. Some are shockingly absurd as she voices jealousy over how I talked to a friend or relative at dinner. I don’t want to mansplain to myself that this is hormonal, but I do start asking other women our age if menopause can have this type of effect.
For months prior to her diagnosis, I had convinced myself that the concerns that were unfolding were due to menopause or a vitamin B-12 deficiency, compounded by the stress of her job. I’ve never embraced denial as a lifestyle or coping mechanism, but in retrospect I knew something wasn’t right; but, I also thought it was something that we could fix.
Week negative 36: D called around dinnertime, frantic that she’s been trying to find her car for the past half hour. The hospital garage is two city blocks and 8 levels — it’s a huge garage, but she’s been parking there at least a few days per week for years. I think of those times I’ve wandered around an airport or casino parking garage trying to find my car, wishing I took a picture of the level painted on a cement column. I pick her up at the top of the garage ramp and we drive around pressing the remote key until we find it. We meet back home for dinner and a glass of red wine.
Week negative 32: D was always so insistent on paying bills on time, more so than I, so years ago we agreed that would be her job. But lately I’m seeing late notices coming in and late fees on our credit card. I offer to take the bill paying job over. She does not resist. I’m fine with crossing something off her to-do list.
When we go out, I usually pay since I’ve always been better at math in my head (tip calculations) than her. A few months later I’m shocked that she is struggling writing a check properly. When she gets her nails done with her sister, they usually take turns paying. Her sister mentions that she doesn’t offer to pay anymore, even though we both know she can afford it.
In hindsight, we realize that she had steadily lost her ability to manage even the simplest financial transaction.
Week negative 24: D is sitting on our bed with a one-foot pile of papers. As she goes through each one, she places it on the new pile she’s creating. I’m wondering where her shred pile is and why she isn’t organizing piles by category. She clarifies that she needs time to get organized, so I let her be, but I know she is going through some fruitless motion. My worry about her has been escalating, but for now I respect her space.
Week negative 20: We’re having the family over for a weekend BBQ. D wants to go to Macy’s for a pair of shoes — she has literally worn holes through her current ones. People won’t be arriving for a couple of hours, so I encourage her to go buy something stylish and comfortable. The mall is only 10 minutes away. She’s gone longer than expected. She calls crying. She can’t find her car. She can’t remember which entrance she parked near. Relatives are now at the house. I don’t want to broadcast her embarrassment. I make some vague statement about car trouble, drive over, find her car and we meet back home.
Week negative 12: We’ve been spending Sunday evenings working on her schedule for the upcoming week, organizing her calendar. I try to interpret emails from her manager intended to outline expectations for projects. I help her format email replies that are concise and professional. But mostly I provide emotional support as we discuss thinking about a different job that is not so demanding, stressful, and often unreasonable. I’d love for her to not feel like she has to work 50 hours per week, and I’d love for her to work with nicer, more reasonable people and a system that isn’t so cutthroat.
Her manager puts her on probation for her job performance in the context that she’s not putting in the effort required for her role. Her director sends her to occupational health “to get cleared.” The occupational health physician clears her.
I wonder if he asked her where she parked her car, what meeting she needs to attend today (or attending that morning), let alone count backwards from 100 by 7s, or give her 3 words to remember.
The stress of being on probation after a lifetime of stellar performance evaluations and professional accomplishments is overwhelming. She wants to quit, but I remind her that she has rights and benefits and shouldn’t feel bullied into quitting. We find a new primary care provider who is empathetic and committed to helping her.
Week negative 10: One of the physicians that she’s been working with for 20 years calls me to tell me that he’s really worried about D. She’s slipping, missing meetings, definitely not her usual self (the one who helped design cancer centers and has been their pillar of quality care). I confirm my concern as well. There is something ominous in his tone that I choose to compartmentalize while I clarify that she recently got connected with a new primary care provider. She has stereotypically ignored her own health as she’s devoted her time and energy to work and others.
Week negative 8: One of our oldest and closest friends calls me the day after they were over for dinner. Her concerned tone is becoming all too familiar. I so appreciate her honesty and sincerity as she points out that D seemed almost childish (in a playful way) during our dinner. I know, I felt it too. She’s going for labs tomorrow and has the week after next off for Christmas.
The last day she ever worked was that Christmas Eve.
Stay tuned for Season Two, coming shortly
