Whenever I post something on Facebook that references the existence of beauty or joy or any kind of gift in dementia or dementia care, there’s always pushback. “There’s no beauty in dementia! Dementia is ugly and brutal and there’s no good anywhere in it. Dementia tortures the person affected and the caregiver.” One person recently even stated that a family member who died with dementia was “crucified.”
There’s no denying that dementia is ugly. No one has ever said, wouldn’t it be great to experience the beauty that is dementia.... no one.
But I would argue that there is beauty and joy and laughter and other forms of goodness that exist despite dementia.
Early on, before dementia has taken a significant toll, I would suggest that to a large degree, we the care-partners and caregivers along with the person who’s living with dementia have a dramatic ability to affect the degree of goodness we experience. A recent and controversial article in The New York Times suggested “changing the tragedy narrative” of dementia by focusing on the good that exists for as long as possible. There’s an opportunity for gentle humor and much of the goodness of ordinary life because although the person living with dementia experiences some deficits, their impact on overall quality of life is not devastating. In fact, this is an important aspect of advocacy since the common understanding of an uninformed public is that a person who is living with dementia goes from healthy to entirely impaired almost immediately — something those of us who interact with people living with dementia know.
But what about later in dementia’s progression? Unpleasant symptoms of brain death caused by dementia abound. Inability to communicate as clearly (or perhaps not at all), incontinence, hallucinations, paranoia, personality changes, and more are frequent. Where’s the beauty in that list? The joy?
it would be naive, even offensive, to downplay the difficult, uncomfortable, frightening aspects of dementia. And it’s true that as dementia progresses, the good days get to be shorter and fewer. Every person experiences dementia somewhat differently, and some people undoubtedly experience the worst dementia has to offer on an ongoing basis. For most people, though, moments of beauty and joy and connection are possible. Here’s what those moments look like...
As dementia progresses, the key is to watch for and/or to create moments of joy and beauty. In fact, one book The Purple Sherpa recommends is titled Creating Moments of Joy for the Person With Alzherimer’s Or Dementia. As dementia progresses, these moment may become less and less common and they may last for shorter periods of time... But if we watch carefully, we will most likely see these moments, at least occasionally. And if we do not believe that such moments are possible, we surely won’t see them.
What moments of joy or beauty have you seen?
I decided to go out to lunch today, and as soon as I sat down I started reading Measure of the Heart: A Father’s Alzheimer’s, A Daughter’s Return Home, by Mary Ellen Geist.
The book starts with the author’s very brief recap of leaving a successful career as a journalist to return home and care for her father. The “unkempt hair, no makeup, and a look of exasperation” in her eyes and those of others who’ve done the same. Faces like her mother’s “that seem to say, This shouldn’t be happening to me. I don’t deserve this. This was supposed to be the best time in our lives...” “The daughters whose eyes I meet... Sometimes we look very, very lost. Almost as lost as our parents who have Alzheimer’s.”
And suddenly, I’m thrust back into those feelings, into having given up a career — a business in my case — and professional activities, professional aspirations, friends, my plan to adopt a child, on and on, all those feelings of loss. And that was before things got hard with my dad, when his memory was slipping significantly but he just needed some support.
Now that my beloved Daddy been gone almost 19 months, I still have no desire or energy to restart my business. I hit the brakes when he went into hospice, expecting for it to last a few months, but he lived for two and a half years, and closing out his house took more than a year. Starting again from scratch is a mountain I’m not ready to climb. I’m grateful for the opportunity to run The Purple Sherpa, though I wish the hard work came with a paycheck at times when I’m wondering how I’ll pay my bills — something I never wondered Before. (Something I’m grateful to find a way to answer every month, especially grateful since I know many others aren’t able to answer as easily.) I’ve moved to a home I love, I’m spending time where I want to, I’ve resumed an important professional leadership position that has been a decades-long goal. There’s much good in my life, but it’s unrecognizable compared to what it was and what I thought it would be. And it’s all tinged with loss.
Make no mistake: I would do it all again, every minute. The good, the bad, the hideously ugly.
But reading this has taken me back in time, left me in tears in the middle of a restaurant, tightening my throat too much even to swallow the garlic Parmesan fries I’ve been anticipating for weeks.
This is what people who haven’t been through this experience can never understand.
Author: Julie Fleming
Julie provided love & care for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011 and with vascular dementia in 2014, until he died in 2017. And she had to learn it all the hard way. Sound familiar?
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