Provocative title, no?
I reserve use of my colorful adjectives to times when I really, really mean it. This is one of those times.
I’ve been on social media now for well over a decade, and it’s the primary way in which I have shared the entire journey of being a caregiver in these past 6.5 years. I love a good meme, and I roll my eyes at the copy pasta just like anyone else. However- I am filled with rage every single time I see “the long goodbye” posts because it is absolute garbage.
Yeah, I said it. Garbage.
Here’s why: It focuses on a perceived death (and the very real experience of ambiguous loss) and displacement of a person while they’re still very much alive. It completely skips the living time between diagnosis and death- arguably the most precious time a person has on this Earth.
Not a single one of us, regardless of diagnosis of any kind, know when we’re going to die. We change relentlessly- sometimes by design, sometimes by the forces of nature. We are not who we were a week ago, a year ago, a decade ago. This focus on the death- on the spiritual and mental displacement of a person, which lends itself easily to displacing their bodies- does an enormous disservice not just to the person that has dementia, but maybe even mores to their caregiver or caregivers.
As a caregiver, I don’t live in the Hereafter Waiting Room. We shouldn’t be living like that with our people who have dementia either. Instead, we need to be creating spaces of competency for them to live and enjoy things, and for ourselves as well.
This narrative of a long goodbye exists in the general population because the National Institute on Aging needed funding upon its creation in the 1970s. Per Jesse Ballenger in Self, Senility, and Alzheimer’s disease in Modern America dementia, particularly Alzheimer’s, was the signature disease necessary to get funding for the newly formed institute. Robert Butler, the direct of the NIA at its founding, pushed the narrative of tragedy and slow disappearance into death from Alzheimer’s disease because he thought that it was easier to sell that to Congress for funding research instead of caregiving or any number of other priorities that could be of high consideration. Selling heartbreak, banality, and victimhood got the dollars, and the public, uninformed about an asterism of neurocognitive dysfunctions, latched onto this national narrative and perpetuated it just as much from their grief as their lack of information, of which there was little for consumption by either professionals or laypersons. It has persisted for the decades since because the progress of research has lumbered, shuddered, and staggered towards understanding the pleiades of dementia that has risen at a coordinating rate with the enormous emotional, psychological, spiritual, and physical turmoil of millions of caregivers who were pushed out of society and onto a pedestal of self-sacrifice and the othering of people with dementia.
When Mom got her diagnosis, I was sitting with her in the doctor’s office. He was incredibly kind and patient, and frankly we had the best possible scenario for this kind of news. He had his nursing staff book our appointment for the end of the day so that he could spend as long with us as we needed to go through what this diagnosis was, how we got to that diagnosis, what the future looked like, etc. I wish everyone had that kind of experience, because it was exactly what it should’ve been for everyone. Initially, Mom was given “probably 18 months” for a variety of reasons. I went home that night and thought a long time about what that 18 months was going to look like, how swiftly the decline would come- and how I needed to make all the living moments count if she was counting down to liftoff.
I hit all the dementia forums available. It was all doom and gloom. No one was focused on living well (or even dying well, for that matter), just “the long goodbye”. It was platitudes and useless nonsense to me. She had, probably, 18 months to live- I wanted to focus on living.
As I watched my mother- Bizarro Mom, as I called her- change, I made notes of things. Like memory, actions are constellations- single points of light in the continuous tapestry of life that connect to form pictures and stories. What I noticed was that Mom had started displaying behaviors often associated with autism, ADHD, and other neurodivergencies. Certain textures, foods, sounds, lights overstimulated her to a meltdown. Her ability to hyper focus, get sidetracked, and then hyper focus again became pronounced. The way she processed moments, pictures, settings- also very on par with certain challenges that people who are neurodivergent face.
The solution clicked into my brain at about 2 am while I, sleepless with anxiety, dolefully scrolled through yet more platitudes while searching for the secret to living with dementia. I couldn’t look to the dementia literature and community for advice on living well because they weren’t focused on living. It hit me like lightning: the people who focused on living with and accommodating neurodivergent people were parents. And what did parents do? Share enormous amounts of information and life hacks to try to create lives, spaces, and experiences for their kids so that they could all live well and function as a family unit.
I googled for hours, aware that at any time she would wake up, that I would spend the day barely surviving. I looked up how to deal with texture sensitivity, light sensitivity, manage environments to keep her from being overstimulated, the best lightbulbs and colors, how to create better processes for her ability, physical “tells” for anxiety when words failed, how to keep someone with an attention deficit on track- how to everything.
Dementia is not the same as ADHD or autism at all- you are born with neurodivergence, and you acquire dementia as a disease, for one, and dementia itself is progressive and increasingly moves the goal posts in a backwards fashion- but the methods for meeting people where they were remarkably were applicable regardless of the fact that they are enormously different in pathology. The other thing they shared was an enormous stigma, an othering, an evanescing in society. As I voraciously tore through parenting forum after parenting forum, magazine articles, and academic publications, I swigged down cheap wine while very quiet tears slid down my face because I finally, finally had a way forward instead of just a way down.
If there ever was a gift of teaching in dementia, it is this: the present in living is what matters, and expecting anyone to always be the same person at all times is what sets us up for disappointment. Dementia requires enormous amounts of grace as a caregiver, and as we dig deep within ourselves to find that every single day, we should not be digging a grave for them but instead creating a space where they can be planted and thrive for as long as possible. Death will come for us all one day, but life comes first.
This is not a long goodbye. It is a continuously renewing hello.
The Dementia Diva 