What did we think the death of our loved ones was gonna be like?
Throughout Mom's dementia journey, I've wrassled my thoughts and feelings into dementia perspectives that often differ with the majority. I've finally decided to write 'em out so I can understand my own mind better, and find others who are also thinking dementia-different.
About a year after Mom's diagnosis, Dad and I found ourselves with a private moment at a family reunion. Sitting in the motor home, Dad expressed his fury that Mom, and us, had to face a death by dementia. I responded swiftly and decisively:
"Dad, there is nothing about you and Mom leaving this planet that is going to make me happy. NOTHING. Dementia or no dementia, it's gonna suck."
I was surprised at the level of vehemence with which this statement flew out of my face. My father appeared to be taken aback as well. I didn't realize I had felt this way. I understood then that the fact that Mom was going to die of dementia didn't faze me one bit. The fact that Mom was going to DIE, as was Dad, before I could beat them to the punch was my nightmare.
Now, I'm a pragmatic little thing - my own personal view on death is that we are born dying. Most don't want to, it's never fun, some leave way too early, and some much too late (Hitler, you asshole), so do your best to enjoy what time you have. I don't see dying of dementia as better or worse than any other fatal, curtain-down demise, for myself or others. So I was dismayed to find that the narrative that permeates a dementia death in books, movies, articles, forums, social media, everything, is that it's the worst option the Grim Reaper's got in his bag of terminal tricks.
All the places I've turned to for information, and guidance have a common dementia vocabulary: "devastating", "harrowing", "nightmare", "horrible disease", "heartache," "exhaustion, and surreal loss". Jeeee-zus christ! This is the verbal landscape a newly diagnosed dementia person has to tromp through? These are the adjectives a family care giver is slapped with the first time they seek help?
And it gets funner... "living dead", "shell of a human", "zombie", and a personal favorite from an award winning short film on dementia, "Losing your memory is like a slow passing away of yourself." WTF? We are slowly passing away versions of ourselves our entire lives. At 62 you are not the same person you were on your 1st birthday. And you don't even remember your 1st birthday - so should we use words equally as devastating for the infant you once were?
Dementia is challenging. Especially for those with little to no resources, or the folks who will develop combative behaviors and their care partners; theirs is a tough, tough road to travel. But for the rest of us, it is not an extraordinary death, deserving to be categorized with such despair, it is just a very long one. Any death by disease will wade in the waters of lost mobility, cognitive decline, fear, anger, anxiety, and anguish. Dad experienced all of this when he died of pancreatic cancer, but it was in the space of three weeks, not years. The financial toll on the person with dementia and the loved ones who take on their care is often greater too because of the longevity of the disease. And while most deaths can put a strain on even great family relationship, dementia's familial strain will be with you for years, not days, weeks, months.
But the longevity of a dementia death is also an asset.
It's a common sentiment that dying quietly in our sleep is the best case scenario. Some of us will achieve that (1 in 8 according to a quick peek around the internet). But put that into perspective: the majority of those who do will leave behind chaos; their own affairs in disarray, their loved ones in shock with grief smashing them to bits having had no time to prepare, leaving lifelong scars of pain and regret for all the things that didn't get said, all the love that wasn't expressed. Is that supposed best case scenario better than dementia? To me it just seems like a horse of a different shitty color.
I would gladly spare my mother every moment of dementia anguish if I could, but this is her fate. This is her journey. The consolation prize for drawing the short-straw of a dementia death is that she has had time to truly savor life, to laugh more, to love fiercely, to sparkle harder. And all of us who love her have had time to prove ourselves worthy of every minute of love and devotion she has freely shared with us throughout her life.
When I started life as a care giver I searched long and hard for words of encouragement, stories of the dementia quirks, the humor, the job satisfaction - I was experiencing all those things, mixed amongst the hardship, but there was not much positivity available with which to boost my own resolve. Instead I found the vocabulary of nightmares, a narrative that is not the complete picture. In the past two years of full-time care Mom, The Other Girl, and myself have cherished each other, irritated each other, teased each other, laughed with each other, yelled at each other, threw our hands up at each other - the entire gauntlet of human emotion. I want to change the dialogue. I want those new to this journey know that they are not the "living dead", they are the "living different" (albeit really different), and that they and their care partners have the full-spectrum of life in front of them - challenges, laughter, hardships, love, compassion, despair, devotion, then on to whatever comes next.
