Episode 1: Everything is Somewhere
Season 1: Surviving Alzheimer’s
Picture this: you’ve been married for 32 years and have 2 adult children. You are both full time working professionals. Your wife is having increasing difficulty keeping organized with her job. She is uncharacteristically not making bill payments. She calls you to help her find her car. You encourage her to restart taking her vitamins. You didn’t know menopause could be like this. She’s 55 years old and a bit of a workaholic and could eat healthier and exercise more (sound familiar?) What else could this possibly be? As unfathomable as it seemed, this was Alzheimer’s steadily infiltrating her brain like termites unabated, taking down a house until the roof collapses.
More than six million Americans have Alzheimer’s disease or some form of dementia, and yet most adults do not know how to talk about the disease, beyond “they forget everything and can’t remember who you are.” Let’s face it — this is not a pleasant topic. It is more like that movie or show that you have to be in the mood for or willing to try because there might be some substance that resonates. Most adults know someone within two degrees of separation with this disease. Alzheimer’s is a neurological degenerative terminal disease — brain cells shrink and die. There is no cure. The victim does not survive the disease, but their loved ones can. This is a story of such a survival.
This publication will capture our Alzheimer’s journey (journey is such a therapeutic buzzword for trying to survive a disease or a trauma) over its 6-plus years in a somewhat chronological order with select timeline jumps and an occasional flashback. I’m going to organize it like seasons of a weekly, hopefully binge-worthy show so the reader can follow at any point that makes sense to them.
This will be an honest, delicately personal, often raw, unavoidably emotional, and sometimes critical account of our lived experience as two 56-year-olds, married for 32 years, navigate the course of this tragic disease. Having said that, an effort to avoid self-pity (or anyone else’s pity) and hyperbole will remain at the forefront. There actually were silver linings on some of those storm clouds. I hope to shed some light on details and strategies, some of which worked well, while some were disasters, because no entity or individual can truly prepare you for how this disease can unfold. Sugar coating or being too vague and general has made me feel cheated and somewhat devalued by the resulting stereotypes.
A couple of months after D was diagnosed with Alzheimer’s, we were having lunch on a local beach. I was distracted by my to-do list, which included completing her disability paperwork. I mentioned to her that I really needed to find that contact name and phone number. D nonchalantly replied “welcome to the life of Doybird (her childhood nickname), don’t worry, everything is somewhere.” That statement set off a light bulb about a metaphor for her disease. Not being able to find your phone or keys or car are the stereotypical challenges that are amplified with the disease (but they are somewhere).
I thought about all the memories and life experiences and the feeling of connectiveness that this disease will jeopardize, but they are all somewhere too; we must figure out how to keep them as accessible as possible for as long as possible. I wasn’t thinking at the time about how the disease will win in the end by steadily dissolving all those files we try to keep organized in our brains. I did have an epiphany that her profound statement would be a great title for a children’s book on the subject, but that’s a story for another time. For now, this is one of the first thing I wrote a few years ago when I started thinking about the disease in my own terms.
Alzheimer’s really slaps you in the face when your wife:
- Can’t sign her name, let alone write a check.
- Starts talking to total strangers as if she knows them (most of whom struggle to remember how they know her).
- Finds more comfort interacting with children and animals than adults — is it the unconditionality and lack of judgement that makes this feel safe?
- Takes jealousy to a whole other level, when in retrospect it was more like feeling left out because she couldn’t understand and participate in the dynamic.
- Talks about the person on the TV in her bedroom that won’t leave her alone, unable to just turn it off.
- Starts sleeping in her clothes because it’s too confusing to change.
- Can’t read more than 3 or 4 words in a row.
- Can’t figure out how to put toothpaste on her toothbrush.
- The first week, then month that she refuses to shower.
- Lets you wipe her ass
- Tries to eat her yogurt with a hairbrush, pasta with a straw, or drink through a spoon
- Screams at herself in the mirror.
- Not being able to leave her for a couple of hours with her sister, who has been her best friend, without an urgent SOS call.
For most of the first 2 years I maintained steady optimism with proclamations of making lemonade from lemons, and we will be the era of the cure, etc. Escalations of agitation, aggressiveness, getting screamed at, breaking door molding, getting whipped with jackets (zippers are bad enough, watch what’s in those pockets), getting pinched, squeezed, pushed, and ultimately punched in the face while driving has dampened my optimistic spirit. Even worse is when these episodes occur in public places we used to enjoy together.
Thanks for diving in…stay tuned
