The Long Goodbye

Navigating my parents' dementia, and my brain's attempt to let it consume me.

✨ Happy New Year, friends! I can still say that on Jan 17th, right?✨

It’s been a while. I have truly been living the Gen Sandwich life, with several weeks of respiratory illness last fall followed by some unexpected caregivng crises - all which led to an unplanned writing hiatus. But I’m back with high hopes for writing this new year, and with new energy to share sandwich caregiving stories, resources, and to build community. Thanks for staying with me, I’m so glad you’re here. Today I’m providing a glimpse into what it has been like for me - as a daughter, parent, human and caregiver - to witness and care for parents experiencing dementia. This is a bit of an update on what’s happened over the past few months, but only barely scratches the surface of the challenges and reflections that cognitive decline generates. Consider this just part 1 in what will be a recurring theme.

On a recent visit to see my mother, she looked right at me and said “who are you?” My heart sunk to my stomach. I took my glasses off, looked at her and said “mom, it’s me, Anna!” After a pause she replied, “OH, I didn’t recognize you… it must have been your glasses.” Maybe it was my glasses, but I also suspect she is struggling further with cognition and connection to reality. The truth is, in the back of my head the question about if and when she will no longer recognize me is constantly present. With each passing month, she seems to let go of more things that she would have previously done or been determined to control. Yet, at other times she tells stories and details that I’m impressed she recalls.

The same is now true for my father, whose situation has taken a downturn that has been unimaginably painful. In October my dad had a bad fall, broke his femur in several places, and required emergency surgery. While the surgery went well, my dad’s already-impaired cognition noticeably worsened, with episodes of delirium. One morning in the days following his surgery, I learned that at night he had tried to get up (on his broken leg) and ripped out his catheter, convinced that my children were being kidnapped and that the nurses at the hospital were in on the plot. This is very unlike my dad, who is generally characterized by a positive outlook and chill demeanor. He later realized that this was a moment of psychosis and he was repeatedly apologetic about it. But he went on to have a few more similar episodes during the following several weeks, and he was honest about not always being able to discern dreams and fantasies from reality.

Anesthesia is associated with an increased risk of delirium and accelerated cognitive decline, especially in older adults and those already experiencing some cognitive impairment. Often it gets better after a few days, or weeks, but it can last months. In my dad’s case, it has improved, especially after going off of pain medications, but his short term memory and confusion continue to seem worse.

I’m starting to truly understand why dementia is referred as the long goodbye. I am grateful that he always recognizes me and is happy to see me. He often doesn’t remember certain events from the previous day or week, and struggles to track the sequence of things, finish his train of thought and remember that he cannot currently walk. My dad is still here, but he is not the same person. The whole person, the dad I knew and depended on for most of my life is not entirely here anymore. And with time, it feels more of him is slowly slipping away.

Fast forward two months: my dad has moved - most likely permanently - to a nursing home in Guadalajara, Mexico. How did this 6,600 mile move come to be? I’m still trying to figure that out, and feeling the whiplash of a drastic change that I was not anticipating, and was not a part of deciding. I may share those details later, with a focus on the family dynamics that so often become strained in times of crisis.

The move was sudden, and I was shocked, sad and angry. The opportunity for my dad to spend time with his children and grandchildren was being ripped away with no warning, and a new wave of realization and grief washed over me. My father was already changing as his cognition declined, but the las few months have changed him further, and in turn me, and our relationship. I’m grieving the things about him and us that may be gone forever. Wondering if my dad will walk again. Harboring new frustrations and anger about the decisions I had no say in, and which will deeply impact my dad but also me, my brother and my children.

My brother Leif visiting my dad before he was moved to Guadalajara. I wonder if and when they will see each other again.

The Mind-Body Connection

In November, all of these drastic changes culminated in a breakdown. The tears flowed more than they had in years, at all times of day, often catching me off guard. I woke one morning in the middle of the night, heart aching in a way that terrified me. Ultimately I was so concerned I went to the ER. But I was fine. Actually I wasn’t fine, but I was physically ok. This was a wakeup call, a panic so severe I had no choice but to slow down, focus on my health and take care of me. Sadness is hard, big emotions are hard, but they are not a threat I must fight or flee. The only way forward is through.

It’s not surprising that those caring for people with neurodegenerative disease were found to have higher rates of depression. In my case, the anxiety of the immediate health scares as well as what was to come, combined with the mounting grief for the parts of my dad that we had already somehow lost, became too much.

I am so grateful for my friends David and Iris who happened to be passing through Guadalajara shortly after my dad moved, and were able to visit him and report back. I was glad to hear that they felt my dad appeared well cared for, and that the place seems nice (despite the food not being great - such a shame in Mexico!). In fact, they said that he appeared in good spirits, and that it was hard to detect the dementia. I believe it, and this is a topic that muddies the swampy waters of dementia even further - and one that I will return to.

I’ll be visiting my dad at the end of the month, and I plan to bring a recorder and ask him to tell some of my favorite stories. I’m looking forward to seeing him.

Is dementia my fate?

Even before these latest developments, a headline about Bruce Willis becoming nonverbal as part of the progression of his dementia sent me into an anxious spiral. If dementia is largely genetic - as I watch my parents succumbing to its painful grip, am I also watching my own fate play out? Is it my destiny to succumb to the grip of declining cognition slowly pulling me under? Losing my mind is to me, terrifying (if I let myself go there).

I remember visiting my paternal grandmother in a nursing home when I was maybe eight years old. Most memorable was the fact that she didn’t recognize my father. As a child the idea of a parent not recognizing you as their own child was mildly disturbing, but it also felt so far away from my current reality. But now as a middle aged parent myself, those memories stir up a tidal wave of fear. An uncle on my dad’s side also had Alzheimers. I have ordered the 23andMe health DNA tests - but still cannot bring myself to open the Alzheimer’s results.

The truth is, while genes do play a role in at least some forms of dementia, in the majority of cases, it appears that the biggest known risk factor is simply age. Lifestyle factors also play a role. But neither genes nor lifestyle are the causal factor in the vast majority of (late onset) cases. That said, they are one factor. I have to remind myself in these moments that while we share genes, I am not living the life my parents lived. My mom had several small strokes that are a likely cause or contributor to her cognitive decline. Both of my parents were not very active later in life, and they drank too much alcohol. My parents’ decline has motivated me more than anything else to follow a healthy diet, exercise daily, limit alcohol and stay mentally engaged and active as I age.

New Year, More of the Good Stuff

My version of “resolutions” this year is really just a “more of these things” list. I do have some big goals, but I’ve decided to take James Clear’s advice and focus on the habits that will move me closer to them - and maybe even more importantly, provide smaller and more frequent moments of satisfaction and joy rather than only getting to enjoy those rare big finish lines. So here are a few of my not-so-big “more of this” goals for the year.

My in-progress 1,000 piece puzzle depicting the Cinque Terre village of Manarola

1. More outdoor walks. Not only do I want to continue to prioritize movement - maybe the most well-proven health and longevity tool - outdoor walks are uniquely special. I love my Peloton workouts, but I want to change things up and compliment them with more steps outdoors. Being outside, soaking in Vitamin D, and reflecting in nature always sparks creative thought and ideas. I thought through many of the ideas in this newsletter on a long walk around my neighborhood.

2. More puzzles. Over the holidays I rediscovered the satisfaction of both jigsaw puzzles and brain games (i.e. the NYT puzzles). I think there are two reasons that I’ve enjoyed and been drawn back to them at this point in time. The first is that jigsaw puzzles create a kind of meditative state, and help me relax and be present when I’m in an over-thinking rut. They require being totally focused to notice the most subtle differences in color and size of each piece, staving off the tendency to ruminate, but with a bonus dopamine jolt every time you find a correct piece. The second reason is that I’ve started doing the Wordle and other NYT games with my oldest kid, who has also discovered how much he enjoys it, and it has become an evening bonding time for us. At a time when there are few things my tween wants to do with me anymore, hearing him repeatedly say how much fun it is and even that “he loves spending time with me” while we are playing is a welcome seratonin boost. I’ll take it while it lasts! Finally, there is some research out there suggesting that puzzles are good for your brain and for preventing dementia. Win-win-win.

3. Writing more consistency and in community. I have really enjoyed getting this newsletter going, and rediscovering writing over the past year. The enjoyment part is a reason in and of itself to continue. I do have some bigger writing goals though, and the only way I’m going to get there is to really create consistency in my writing routine. I need and want community to help build this consistency, but also for exchanging feedback, improving my craft and making it less solitary. I’m still figuring out how best to do this. If you have ideas, or things that have worked for you, let me know!

Have you experienced caring for someone with dementia? Do you have New Years “more ofs” you want to share? Let me know in the comments, I always love to hear from you!

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