The all too common perception that life with dementia is not worth living.
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.
It's not unusual for strangers, who have observed Mom and I out and about, to pull me aside and whisper something along the lines of how sorry they are for us, how difficult, how challenging life must be. As they shake their heads at our plight they seem to expect some sign from me that our lives are complete devastation. This will happen with casual acquaintances too.
While I am not unappreciative of a little acknowledgement of life's difficulties, these uninvited asides make me uncomfortable.
I tend to deflect with a flippant response like "Well, sure it's a challenge. But borrowing money and never paying it back is a helluva lot easier now!" (Not kidding - a super lucrative benefit of a mother with dementia. That is, until your dad catches on.)
I've thought a lot about why these interactions make me squirm, and I've realized the word choice and tone of their speech implies that life with dementia is not worth living, that it's one sad song after another. In the space of these brief interactions I have not yet found a way to counter such a misconception. Do I list all the things Mom does with her time? The plays, the movies, the concerts, the family visits, the daily walks through lovely parks and forests, the delicious dinners at home, the hockey games with the nephew, the laughter that sometimes bursts out of her (both at herself and us), the weekly walking dates with friends? Do I mention that for a retired person, even with dementia, this broad gets around? She often visits the majestic Oregon coast. She breathes in the fresh air and sweeping landscapes of eastern Oregon on a regular basis. She's been cruising to Mexico, and traveled to Washington, California, and Nevada in the last two years. I know a lot of people, not old and without dementia, who wished they had that varied of a life.
I also find the pity shown towards me a mistaken perception I can't easily correct. I know a lot of care givers have loved ones with really challenging symptoms of this disease, like aggression (which is a whole 'nother ballgame), but while Mom is ornery, she's not combative. While Mom is anxiety ridden (a lot), she's not enraged. I also have The Other Girl to shoulder the burden, and an army of additional family/friends who are involved.
In assisting Mom to the end of her life I've committed financial suicide and pretty much ended my career in post-production, but as jobs go, care giving for my Mom is definitely not the worst I've ever had. And from what I can tell from the FB groups and care giving forums I participate in, it's not the worst for most of us providing care. A 2017 AARP poll found that 90% of the 1,004 long-term caregivers valued the experience. I agree completely. It is certainly the hardest job and I don't want to give the impression that I am underestimating the task. It's not as if care givers frolic through flowery fields of dementia, farting butterflies and singing cheerful ditties in colorful frocks while adorable lambs caper merrily by our sides.
To exist 24 hours a day with laser focus on someone else's happiness, who has a disease that renders them incapable of happiness for much of their waking hours is EXHAUSTING, FRUSTRATING, INFURIATING. But when I nail it, it's also EPIC job satisfaction to see that ornery old crazy-lady smile.
When I'm throwing my own pity party in my head, I try and put on the breaks by thinking about war torn regions. I imagine the challenges a care giver in Syria, with a civil war raging around them, is facing right now. How do you explain to your care partner that you must flee without increasing their anxiety a hundredfold? Or trudge a refugee trail with a care partner who's mobility is compromised, or incontinent? Or seek asylum from bullets, bombs, poison gas with someone who is sundowning? That usual slaps me upside the head and shuts the woe-is-me party down.
Life is challenging with dementia - for Mom and all of us who love her. And every week those challenges morph and worsen. But it's also lovely, and funny. There are new experiences to be had, new places to explore. Does she have to remember these adventures to make them valid? If she doesn't does that negate the experience/her very existence?
This life is worth living, both for Mom and for me. I get to give back to the woman who devoted her life to raising two good human beings (the verdict was out on that whole "good" thing for awhile, but I think The Other Girl and I have finally achieved her goal), and Mom continues to have the full human experience; the joy, heartache, love, fear, frustration, pleasure, anguish - all of it.
I came across this quote on Twitter:
"My life is not on hold during this intense caregiving phase. This is my life right now, and it's part of my growth as a person." ~ Amy Goyer
I would add that my mother's life is not on hold either. This is her life right now, and part of her human experience. We'll gladly accept your compassion and kindness (and gifts of chocolate, or... a pony!), but save the pity for someone else.
