'American Fiction' told my story. Being a dementia caretaker is exhausting.
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One thought circled my head when my dad received his dementia diagnosis: "Why should I care for someone who didn't care for me as a child?"
I was 22 years old. My dad was 56.
Underneath the satire in "American Fiction," the movie dives into the reality for many caregivers of dementia patients. It sucks.
The film, based on Percival Everett's 2001 novel "Erasure," pokes at the fabric of frail familial relationships that only worsen when adult siblings Thelonious "Monk" Ellison (Jeffrey Wright), Lisa (Tracee Ellis Ross) and Cliff (Sterling K. Brown) find out their mother Agnes (Leslie Uggams) has dementia.
All questions circling their heads: Who's going to be her caregiver? Why should I quit my job over my siblings? And does she really need to go to the best assisted living facility when she wasn't even the best mother?
I understood completely.
Finding out my father had dementia
An early-onset dementia diagnosis catapulted my dad back into my life only a year after we'd last seen each other. I was constantly seeking validation and my negative self-talk started to sound like the verbal abuse I'd endured from him, reinforcing that I was not good enough. Pretty enough. Worthy enough.
As it reached its peak, I cut my dad out of my life to begin healing.
That all shifted when my dad's boss called to tell me he could no longer keep his job. My dad would accidentally print thousand-page documents, repeat tasks he'd already finished and fail to get a doctor's clearance to return to work.
In a short period, I returned home to upstate New York from New York City to become my dad's power of attorney. I needed to take extended absences from my job because remote work wasn't allowed, attend countless medical appointments, compare care facility costs and navigate a horrible retirement system.
Because he was estranged from his siblings, his care largely landed in my lap with the help of my mom – his ex-wife and still close friend to my dad.
Like Monk, Lisa and Cliff, I didn't want to do any of that.
Taking on a caregiver role can feel overwhelming
I also wasn't prepared. Nobody is, especially not millennial children, like myself, or Gen Z below me.
"You're talking about a group of caregivers who are on the low end of the age of 27 (and) just starting out in their careers … There may be opportunities that they're being presented with to expand their career and yet they're trying to balance their caregiving role as well," says Monica Moreno, senior director of care and support at the Alzheimer's Association, when discussing the impact on millennial caregivers.
One in six millennial caregivers is taking on the role of caretaker for someone with dementia, according to the Youth Against Alzheimer's 2017 report.
When my dad was diagnosed, I was a year into my first job as an entertainment journalist making an annual salary of $45,000. I had limited PTO that quickly ran out, and the idea that my career would be over before it began was heartbreaking.
Seeing Monk, Lisa and Cliff battle it out on screen over their mother made me tear up. Somebody saw me and felt compassion for the hardship dementia can have on a whole family.
Even when the siblings soften toward their matriarch, Agnes makes it difficult for them with her sharp commentary about Monk's weight, Lisa's divorce and Cliff's sexuality. Still, the siblings did the best they could while trying to heal their inner children.
"If you're stuck and you're feeling emotions of depression and you're not able to function and you're just not able to kind of move beyond these feelings, then it's really important to see a doctor or a counselor or to get some help to help you move forward," Moreno says.
'A lot of ambiguous grief'
I've had people invalidate my emotions toward my dad and his dementia because all they see is a frail old man.
"Oh, but he's your dad." "You should want to help."
Sometimes people will treat you like you have "cooties," creative director and designer Jenna Josepher, who is a caregiver for her father, jokes. However, she joined the CaringKind caregiving support group where she learned "how normal it is to feel anger or resentment. … And those are the kinds of feelings that I felt like are not really accepted by people who don't totally know what you're going through."
When I look at my dad, I see the face of a hypercritical figure I needed nurturing from.
"Dealing with someone who has dementia is extremely emotionally draining because there's a lot of ambiguous grief … a term for when you're grieving for someone who's still here (but in this case) they've changed so drastically," says Amy Goyer, AARP's national family and caregiving expert.
I'm grieving that I'll never get an apology about the way my dad parented me. With dementia, my dad is kind. He says "I love you." He always wants to talk and he doesn't remember why I don't want to talk to him.
'American Fiction' review: Provocative satire unleashes a deliciously wry Jeffrey Wright
Resources for dementia caregivers
"One of the things I always say is that no one should have to go through this disease alone," Moreno adds. "Unfortunately, for so many families, they're not aware of the resources that are available for them in their community."
Joining a support group is a great way to share your story, learn from others and be in community to not feel so alone.
ALZConnected provides a place for people with Alzheimer's disease and their care partners.
AARP Family Caregivers Discussion Group is a space for people to connect, share practical tips, offer support and discuss their family caregiving experiences.
Caring Kind offers in-person support throughout New York City and has a digital group for caregivers to connect. To join, call their helpline at 646-744-2900.
To be an effective caregiver, education on dementia and Alzheimer's is imperative, Moreno says.
Alzheimer's Association Free 24/7 Helpline (800-272-3900)
My emotions are complex and up until watching "American Fiction," I thought I was alone. But as someone who once considered my dad my greatest enemy, I wouldn't wish dementia on anyone − no matter how strong their relationship is with those around them. I do, however, wish more visibility on the incurable disease.
Bruce Willis and my dad received the same aphasia diagnosis. Then everything changed.
This article originally appeared on USA TODAY: 'American Fiction': The movie helped me cope with my father's dementia
