Monday, May 20, 2019

Voices of Experience: How to Survive Caring for Aging Parents

By Jacqueline Marcell

I want to tell you how much I miss my mother. Bits of her are still there. I miss her most when I am sitting across from her.  ~ Candy Crowley

Jacqueline Marcell is a former television executive who gave up her career to take care of her challenging elderly father and sweet mother, both with undiagnosed Alzheimer’s. The experience was so shocking that it compelled her to write her first book, Elder Rage, or Take My Father, Please!, to help caregivers avoid all the pitfalls she experienced and to prevent their frustrations from escalating to any form of elder abuse. Here she offers a glimpse of her caregiving journey:

For eleven years I pleaded with my challenging elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I went ahead and hired soon sighed in exasperation, “Jacqueline, I just can't work with your father. His temper is impossible to handle and he’s not going to accept help until he's on his knees himself.”

When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his very loud protests. It was so heart-wrenching to have my once-adoring father be so loving one minute, and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house the next. I took him to several doctors and even a psychiatrist, only to be flabbergasted he could act so normal and charming when he needed to.

Finally I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and PET scans. After ruling out numerous reversible forms of dementia such as B-12 and thyroid deficiency and evaluating their many medications, he shocked me with a diagnosis of Alzheimer's in both my parents – something all their other doctors missed entirely.

What I'd been coping with was the beginning of Alzheimer’s, which begins slowly and appears to come and go. I didn't understand that my father was addicted to and trapped in his own bad behavior of a lifetime of yelling to get his way, which was now coming out in over-the-top spurts of irrationality. I also didn't understand that demented does not mean dumb (a concept not widely appreciated) and that he was still socially adjusted enough never to show his Mr. Hyde side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

Alzheimer's makes up 60-80% of all dementias and there's no stopping the progression, nor is there yet a cure. However, if identified early there are a few FDA-approved medications (still more in clinical trials) that in some patients can mask symptoms and keep patients in the early independent stage longer.

Once my parents were treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s volatile aggression without just making him sleep all day, I was finally able to optimize nutrition and fluids with much less resistance. I wish I had known to also take them to a Functional Medicine MD to test for nutritional deficiencies and to do genetic DNA testing.

I was also finally able to manage the roller-coaster of challenging behaviors. Instead of logic and reason, I used distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, lived in their realities of the moment. I finally learned to just go-with-the-flow and let hurtful comments roll off while distracting with a topic of interest from a prepared list.

And most importantly, I was finally able to get my father to accept two wonderful live-in caregivers and not drive them to quitting. Then with the tremendous benefit of Adult Day Health Care five days a week for my parents and a support group for me, everything finally started to fall into place.

Alzheimer's afflicts more than 5.7 million Americans, but millions go undiagnosed for many years, because early warning signs are chalked up to stress and a “normal” part of aging. Since one in six women and one in 11 men are afflicted by age 65, and nearly half by age 85, healthcare professionals of every specialty should know the TEN WARNING SIGNS OF ALZHEIMER'S and help educate their patients so everyone can save time, money, heartache… and a fortune in Kleenex!

About the Author: Jacqueline Marcell is an expert on a number of topics stemming from her personal experiences as an author, a caregiver, and a breast cancer survivor ~ including all aspects of eldercare and the challenges of balancing family, career and aging parents in the face of serious illness. She offers herself as a popular keynote speaker on a broad range of topics (see Speaking Engagements for a specific list). She also speaks about writing and self-publishing, securing celebrity endorsements, and embracing gratitude and humor to remain positive through life's challenges. Her popular and critically-acclaimed book Elder Rage is required reading in several university courses on geriatric assessment and management, and is now being considered for a film.
Find Jacqueline on LinkedIn and on Facebook, here and here. Options for purchasing her book Elder Rage are listed on her website, here.

© by Jacqueline Marcell
Website: Elder Rage

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