Dementia is a team sport.
Updated: Jan 27
This week, the team fell apart.
When The Other Girl and I began caring for Mom 24/7 we took very different approaches to our dementia education. Mom had been diagnosed 5-years prior so we were on-deck for the personal changes she had already gone through, but the wider world of dementia was new to us. I did what I always do when starting a job in a new-to-me industry: I researched what dementia and dementia caregiving entailed to better prepare myself for the challenges.
I perused all the dementia media I could find; online documentaries, caregiver blogs, caregiving and dementia books. I already knew some of what dementia might bring to the table, but I was still shocked; the stories depicted dementia people in the throes of delusion, rage, anguish, and their care partners were isolated, exhausted, bitter, utterly defeated. So this was going to be our future. It was grim. It was tragic. It was the narrative.
My sister took the opposite approach. To her, knowing other's harrowing experiences would shake her resolve to meet Mom's needs; she always shut me down when I tried relaying the caregiving terrors to come. I begrudgingly respected that. As Dad used to say, "There's more than one way to skin a cat" - just because I required foreknowledge didn't mean it was the only way to prepare for Mom's tragedy-filled dementia future.
But here's the thing, two and a half years later it has not been tragedy-filled. Our experience has been joy, despair, happiness, success, failure, anger, compassion, hilarity, heartbreak, and, at times, tragedy.
I've come to understand that the true dementia narrative is a multitude of experiences/stories. Told by caregivers in forums and FB groups where they share funny, endearing moments they've experienced with their dementia person, relay their care giving victories and failures, vomit up frustrations, seek advice - always to be met with laughter, support, empathy, and reassurance that they are not alone.
There is a also a wide variety of experiences relayed on blogs and Twitter feeds of pro-active dementia people who refuse to be dismissed by society because of their diagnosis, mobilizing with pride to change the perception of dementia.
The pervasive tragic narrative I found in 2016 is not even close to the whole of the dementia playing field I now roam.
So... this week a Washington Post article popped up on my Twitter feed:
It was an excellent article on rethinking the dementia tragedy narrative. Not dismissing it, but giving dementia people and their caregivers a different perspective which included humor, interactive play, and positivity that may ultimately ease the difficulties of the journey. I promptly re-Tweeted it, posted it on Stumped Town Dementia's FB page, as well as a few FB groups, and caregiver forums.
Later, I went back and read comments.
"I don't know what the writer of this article was thinking. There is NEVER any joy for a caregiver who is taking care of someone with Alzheimer's."
"I am taking care of my parents full time and nothing about it is joyful....The reporter is an awful person and wrote this article just to make me feel terrible."
"There is absolutely nothing joyful about this disease... it is insidious and evil... by the time you walk in your loved one is in diapers and doesn't know who you are or even they are...I dare you to find the fucking joy in that."
It went on, with some commenters thankful for a new approach to incorporate into their journey, but a majority of the threads were exploding with rage. I was surprised at the level of sadness I felt in reading such vitriol; my fellow dementia team members had turned on each other.
And it's been on my mind ever since. Why the hatefulness? Why the contempt? It seemed most of the furiosos were enmeshed in the end stages of dementia, which is, understandably, a time ripe for lashing out in frustration - caregiving resources having been depleted over the time it took your loved one to get there. But isn't that an opportune time to be presented with new tools to try?
Like all dementia strategies, some flat out don't work for you and your dementia person, does that mean the media should not inform others about them? No other care partner teams should have the opportunity to take a crack at a new approach?
What is the benefit of silencing new voices? Of telling people to shut up just because they envision a better dementia journey then the current status quo of tragedy, tragedy, tragedy? The majority of the people in the article who are thinking dementia-different are former care partners to their own dementia loved ones. They've been to the goal line, saw the gaping holes in the defense and have had time to devise new opportunities for turnovers. The commenters responded as if they were the only ones who knew what they were talking about when demanding everyone be steeped in the tragic, without taking into account that those in the article also knew what they're talking about when offering a different perspective.
"There is no "joy" when you have to deal with the living body of a friend or loved one who no longer inhabits that body. That body can live on and on."
That body sure can, but where is the proof that our loved ones no longer inhabit it? That they can no longer benefit from joyfulness? That's our assumption, and one that seems logical, but I find no studies to prove it. On the contrary, I find many who's experiences dispute it. In her book Where the Light Gets In: Losing My Mother Only to Find Her Again, Kimberly Williams-Paisley recounts several moments of connectivity with her mother after she became non-verbal and wheelchair bound.
I've come across other accounts by not-famous-actresses-turned-author caregivers who knew that they had moments of lucidity with their dementia loved ones up to their death.
I follow several dementia folks on Twitter who also question this cognitive assumption (and, thankfully, every other assumption about dementia!). A recent Tweet from Janice Swink, who is living with frontotemporal dementia, asked...
"How can ANYONE say that those of us with dementia are not aware to the very end of what is going on around us? Just because we may not be able to verbally communicate does not mean we aren't aware."
This Scientific American article quotes a 2009 study on terminal lucidity noting that dementia people often become perceivably lucid before death. "Such incidents happen regularly" reported Michael Nahm, the author of the study.
"I suppose all that works with the initial stages of Alzheimer's or any of the other forms of dementia, but the later stages are a heartbreaking horror show."
An Australian study referenced in the article found that humor as a therapeutic approach "...worked well for pretty much everyone," Bell noted, particularly for the "highest-care" patients deemed most debilitated by dementia." So, the most debilitated were cognitive enough to receive relief from dementia's worst manifestations with humor.
In contrast to all this, I can not find a single study that confirms tragedy is doing caregivers and their dementia partners a whole shit-ton of good.
There are times when I need to immerse myself in tragedy. I wallow in pity for Mom, The Other Girl, and myself. I'll write a "woe-is-me" post, toss a "today-can-suck-it" paragraph up on a forum, be the recipient of advice and empathy from my fellow dementia teammates, and use that to pull myself back together. It does serve a beneficial purpose - it's out of my system (for awhile), and I am able to refocus my caregiving efforts. But what I don't do is insist my teammates be in the exact same tragic space as I am.
So, let's pull the team back together, continue to learn from each other, share our journeys openly and honestly, without fear of recrimination. If we can offer cheers for small victories, boos for the opposing dementia factions (I'm looking at you Alzheimer's, Lewy Body, etc.), and shoulders to cry on when the game has been lost, we will emerge as the global dementia team we are capable of being; unwilling members doing our best to support each other now, while building and improving defensive strategies to leave the dementia playing field in better shape for the players to come.
(Well, yeah, there is, but we don't have to add screaming expletives
to those who are striving to cry less.)