Caregivers Don’t Want This BS

I turn the car radio to the local NPR station and the “This I Believe” segment turns my mood from light to bitch-crazy angry.

“Many of us have known friends and loved ones whose minds and mental faculties have slipped away as some form of dementia has tightened its unrelenting grip,” says the NPR announcer. “We know the challenging signs: confusion about time and place, memory lapses, language difficulties, mood changes, isolation. No doubt, this is a painful, agonizing process for nearly everyone caught in its midst. But some of us also find precious, even bright moments as we travel this complicated journey. Jennifer has found just that and shares lessons she’s learned in today’s segment.”

Jennifer tells us about the unexpected pleasures of spending time with her 85-year-old father who had Alzheimer’s. Perky Jennifer tells us about how her family gathered around and helped her dad. How sad it was when they had to move him into a nursing home. How she volunteered at a daycare center for dementia patients after he died, which turned into a whole new career path as a recreational director at a care facility (aka nursing home.)

This has been such a beautiful life-affirming career change for Jennifer. Her Dad would be so proud of her.

Go, Jennifer! You bitch.

If I were on the radio, I would tell my extraordinary caregiver sisters to tune out upbeat, superficial, well-intentioned people and propaganda. It’s more delusional than our husbands’ deteriorating brains. We’re getting through each day. We’re grieving. We’re running a marathon we never trained for.

Here’s what I mean about propaganda.

I recently downloaded brochures from associations about how to deal with a person’s neurological degenerative disease: Alzheimer’s, dementia, Lewy Body Disease, and advanced Parkinson’s Disease.

I read “Finding a More Meaningful Life Through Caregiving,” and find this nugget: “If he is living in 1968, enter into his reality and enjoy it. This isn’t to pacify him. This is an opportunity to communicate and treasure memories out of time?”

Are you kidding me?

Maybe these neurological disease experts are unfamiliar with noise torture. The BBC reported on the effectiveness of playing heavy metal Metallica and the Barney the Dinosaur theme song to torture Iraqi POWs. They found that a person’s brain starts to slide hearing this music over and over.

Try it. Imagine continuously listening to ABBA’s “Dancing Queen” or any type of annoying music you hate. It’s on in the morning when you’re making coffee. It’s on when you’re driving your spouse from one medical appointment to another. It’s on when you’re eating dinner, trying to sleep, or responding to another new medical professional who wants to go over your husband’s long list of medications.

Excuse me, how many times would you like to hear the same two or three treasured memories? 20, 100, every day for 10 years. Forget out of time, I am out of my mind hearing about his time at Hunter Air Force base and how big the NCR computers were back in the day.

Hearing the same 1968 memories is like noise torture. Like I’m a Prisoner of War.

“Treasure memories of time with him.” Yeah, right.

I really should stop reading this booklet. Look at the cheesy photographs of smiling people. It’s hard to believe the guys pictured are losing their minds, that their brain cells are disintegrating. Look at them wearing those crisp, ironed blue oxford shirts, with full heads of styled hair, smiling attentively and looking alert.

Have you been in a neurologist’s waiting room lately? The guys are leaning on their walkers, wearing shirts that snap because buttons are unmanageable. Their faces have blank, vague, emotionless expressions.

This disease is tragic. Do not insult us with cheery and delusional “caregiver tips.” The caregiver sisters are not buying it.

And the wives in the booklet photos? Look at them fawning over their husbands, so patient, all soft edges. Their faces have wrinkles, but they look rested, like they sleep eight hours a night and have no backaches from getting someone twice their size up off the floor after a fall. I used to want to look like Audrey Hepburn did at my age. Now I want to look like one of these caregiver models. (Their hair is such a perfect color, and the bob is blow-dried perfectly. Gorgeous!)

Please, please, caregivers are drowning. Stop the drivel. Don’t tell us to look for the moments of joy. Never tell us how to feel. You have no idea.

We want honest, kind truthtellers, not perky cheerleaders. We want people — especially our physicians and disease experts — to validate what we’re experiencing.

Most of all, we want to know we are not alone.