Elder Rage - A Sample Caregiver Story
Elder Care & Elder Rage: Know The Warning Signs of Alzheimer’s!
By Jacqueline Marcell, Author of ‘Elder Rage’ www.ElderRage.com
For eleven years I pleaded with my stubborn elderly father to allow a caregiver to help him with my ailing mother, but after 55 years of loving each other he adamantly insisted on taking care of her himself. Every caregiver I hired to help him soon called in exasperation, “Jacqueline, I just can’t work with your father–his temper is impossible to handle. I don’t think he’ll accept help until he’s on his knees himself.”
My father had always been 90% great, but boy-oh-boy that temper was a doozy. He’d never turned it on me before, but then again I’d never gone against his wishes either. When my mother nearly died from an infection caused by his inability to continue to care for her, I flew from southern California to San Francisco to try to save her life–having no idea that in the process it would nearly cost me my own.
EARLY SIGNS OF DEMENTIA?
I spent three months in the hospital nursing my 82-pound mother back to relative health, while my father went from being my loving dad one minute to calling me nasty names and throwing me out of the house the next. I walked on egg shells trying not to upset him, even running the washing machine could cause a tizzy, and there was no way to reason with him. It was so heart wrenching to have my once-adoring father turn against me.
I immediately took him to his doctor, only to be flabbergasted he could act so normal when he needed to. I could not believe it when the doctor looked at me as if I was lying to her. She didn’t even take me seriously when I reported that my father had nearly electrocuted my mother, but fortunately I walked into the bathroom just three seconds before he plugged in a huge power strip that was soaking in a tub of salt water–along with my mother’s feet! Much later, I was so furious to find out my father had instructed his doctor (and everyone he came into contact with) not to listen to a thing I said because I was just a (bleep-bleep) liar—and all I wanted was his money! (I wish he had some.)
Then things got serious. My father had never laid a hand on me my whole life, but one day nearly choked me to death for adding HBO to his television, even though he had eagerly consented to it just a few days before. Terrified, I dialed 911 for the first time in my life and when the police finally arrived they took him to a psychiatric hospital for evaluation. I could not believe it when they released him right away, saying they couldn’t find anything wrong with him. What is even more astonishing is that similar incidents occurred three more times.
CAREGIVER CATCH 22
After three months I was so happy to finally bring my frail mother home from the hospital, but furious to find myself completely trapped. I couldn’t fly home and leave my mother alone with my father–she’d surely die from his inability to care for her. I couldn’t get my father to accept a caregiver, and even when I did—no one would put up with his raging very long. I couldn’t get healthcare professionals to help–my father was always so darling and sane in front of them. I couldn’t get medication to calm him, and even when I did—he refused to take it, threw it in my face or flushed it down the toilet. I couldn’t place my mother in a nursing home–he’d just take her out. I couldn’t put him in a home–he didn’t qualify. They both refused Assisted Living—and legally I couldn’t force them. I became a prisoner in my parents’ home for nearly a year trying to solve crisis after crisis, crying daily, begging for professional help—and infuriated with an unsympathetic medical system that wasn’t helping me appropriately.
TRAPPED IN OLD HABITS
What I’d been coping with was the beginning of Alzheimer’s (just one type of dementia), which begins very intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime and his habit of yelling to get his way was coming out over things that were illogical… at times. I also didn’t understand that demented does not mean dumb (a concept not widely appreciated) and that he was still socially adjusted never to show his ‘Hyde’ side to anyone outside the family. Even with the onset of dementia, it was astonishing he could still be so manipulative and crafty. On the other hand, my mother was as sweet and lovely as she’d always been.
After the neurologist masked the symptoms of Alzheimer’s in my parents, and also treated their depression (often present in AD patients), he prescribed a small dose of anti-aggression medication for my father, which helped smooth out is his volatile temper without making him sleep all day. (Ohhh, if we’d only had that fifty years ago!) It wasn’t easy to get the dosages right and took a lot of time and patience (no, he wasn’t suddenly turned into a perfect angel), but at least we didn’t need police intervention any longer!
IF ONLY WE HAD LONG TERM CARE INSURANCE!
Before long my parents’ life savings was gone and we were well into mine. I was advised to apply for Medicaid for them and after months of aggravation, paperwork and evaluation they were approved for financial help from the government. I was so relieved, until I learned that it would only pay to put my parents in a nursing home, not keep them at home with 24/7 care. And, since my mother needed so much more care than my father, they’d be separated, something they would never consent to—nor did I want to do after all this work to keep them together.
I could not believe it—I finally had everything figured out medically, behaviorally, socially, legally, emotionally, two wonderful caregivers in place, the house elder-proofed, and all I needed was some financial help to keep them at home. If I’d just made sure my parents bought Long Term Care Insurance (or I bought it for them) years ago while they were still healthy and before any diagnosis of dementia, it would have covered the cost of their care at home. Instead, I paid for it, which nearly wiped me out in every way. After five years of managing 24/7 care for my parents, I then survived invasive Breast Cancer.
