CAREGIVING CATCH 22: IF I ONLY KNEW THEN--WHAT I KNOW NOW!
By Jacqueline Marcell, Author, “Elder Rage” (www.ElderRage.com)
For eleven years I begged my obstinate elderly father to allow a caregiver to help him with my ailing mother, but after 55 years of loving her--he adamantly insisted on taking care of her himself. Every agency and caregiver I hired to help him sighed in exasperation, "Jacqueline, we just can't work with your father--his temper is impossible to handle. I don't think you'll be able to get him to accept help until he's on his knees himself."
My father had always been 90 percent wonderful, but boy-oh-boy that raging temper was a doozy. He’d never turned his temper 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 care for her, I flew there immediately 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 nursing my 82-pound mother back to relative "health", while my father said and showed that he loved me one minute, but then he’d get furious over some trivial little thing, call me the most horrible nasty names and throw me out of the house the next. I was stunned to see him get so upset over the most ridiculous things, 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 my father to his doctor, but was flabbergasted that he could act normal when he needed to! I could not believe it when the doctor looked at me as if I was the crazy one. She didn’t even take me seriously when I related that my father had nearly electrocuted my mother. I walked in the bathroom three seconds away from him plugging in a power strip that was in a tub of water along with her soaking feet! He’d also left a gas burner on for hours on the stove without it lighting, filling their home with fumes. Had I not returned from shopping when I did, he would have burned the house down. Much later I found out my father had instructed his doctor (and every healthcare professional he came in contact with) not to listen to anything I said, “because I was just a (bleep bleep) liar, and all I was after was his money.” (Boy, I wish he had some.)
Then things got really serious. My father had never laid a hand on me my whole life, not even a swat, but one day he nearly choked me to death for adding HBO to his cable package--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 the police came and took him to a psychiatric hospital for evaluation. After a couple days of tests and observation--I just could not believe it when they released him saying they couldn't find anything wrong with him. And what is even more astonishing is that similar horrifying incidents occurred four more times before I finally got help from the medical community.
I couldn't fly back home and leave my mother alone with my father, because she'd surely die from his inability to care for her. I couldn't get the doctors to believe me, because he was always so darling and sane in front of them. I couldn't get medication to calm him, and even when I finally did--he refused to take it, threw it in my face or flushed it down the toilet. I couldn't get him to accept a caregiver in their home, and even when I did--no one would put up with him for very long because he was so nasty mean. 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 any mention of assisted living and legally I couldn't force them. I became trapped at my parents' home for nearly a year trying to solve crisis after endless crisis, crying rivers daily, and infuriated with an unsympathetic medical system that wasn't helping me appropriately.
GERIATRIC DEMENTIA SPECIALIST MAKES RIGHT DIAGNOSIS
You don't need to have a doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat it properly. Finally, I stumbled upon a compassionate geriatric neurologist/dementia specialist who performed a battery of blood, neurological and memory tests, along with P.E.T. scans. First, he reviewed all of their medications and ruled out all the many reversible dementias; and then, you should have seen my face drop when he diagnosed Stage One Alzheimer's in both of my parents--something all of their other doctors had missed entirely.
TRAPPED IN OLD HABITS
What I'd been coping with was the beginning of dementia, which is intermittent 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 that his old habit of yelling and pounding the table to get his way was now coming out over things that were illogical and irrational... at times. I also didn't understand that demented does not mean stupid at all (a concept that is 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 absolutely amazing that he could still be so manipulative and crafty. On the other hand, my mother was as sweet and lovely as she’d always been.
BALANCING BRAIN CHEMISTRY
Alzheimer's is just one type of dementia (making up 60% of all dementias) and there's no stopping the progression nor is there yet a cure. However, if identified early there are medications that in most people can mask/slow the progression of the disease, keeping a person in the early (independent) stage longer--delaying full-time supervision and nursing home care. (Be sure to ask a dementia specialist about the FDA approved medications: Aricept, Exelon, Razadyne, and Namenda.)
After treating the dementia and then the (often-present) depression in both parents, the doctor prescribed a small dose of anti-aggression medication, which helped smooth out my father’s volatile temper without making him sleep all day. (Boy I wish we’d had that fifty years ago!) It wasn’t easy and not perfect, but once their brain chemistries were better balanced, I was able to optimize nutrition and fluid intake with much less resistance.
CREATIVE BEHAVIORAL TECHNIQUES
I was also able to finally implement creative behavioral techniques to cope with the odd episodes and nuttiness. Instead of logic and reason--I learned to use distraction, redirection and reminiscence. Instead of arguing the facts--I validated their frustrated feelings. I lived in their reality of the moment and strived to just “go with the flow” with whatever was being said. And if none of that worked, the promise of vanilla ice cream worked the best to get my father into the shower, even as he swore a blue streak at me that he’d just taken one yesterday (over a week ago)!
Then finally, I was able to get my father to accept a caregiver in their home (he’d only alienated 40 that year—most only there for ten minutes), and with the help of Adult Day Health Care five days a week for them and a weekly support group for me, everything started to fall into place. It was so wonderful to hear my father say once again, “We love you so much, sweetheart.”
But then, after four more years of loving each other (in their own home with two live-in caregivers), my parents passed from heart attacks just a few months apart. And even though it cost me a small fortune to be responsible for every aspect of their last five years, and it was the hardest thing I have ever done--I am proud to say I gave them the best end-of-life I possibly could.
ALZHEIMER’S / DEMENTIA OFTEN OVERLOOKED
What is so shocking is that none of the many healthcare professionals who treated my parents that first year ever discussed the possibility of Alzheimer’s (or any type of dementia) with me. I was told that their “senior moments” and intermittently odd behaviors were just old age, senility, and a “normal part of aging”. Since one out of every eight persons by the age of 65, and nearly one out of every two by the age of 85, gets Alzheimer’s Disease--I should have been alerted.
Had I simply been shown the "Ten Warning Signs of Alzheimer's", I would have realized a year sooner what was happening to my parents and known how to get them to the right doctors to get the help they so desperately needed. If this rings true about you, or someone you love, I urge you to get help from a dementia specialist immediately.
TEN WARNING SIGNS OF ALZHEIMER'S
(Reprinted with permission of the Alzheimer’s Association)
1. Memory loss
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation of time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood or behavior
9. Changes in personality
10. Loss of initiative
Expanded Descriptions: http://www.elderrage.com/alzheimers.asp
JACQUELINE MARCELL is a former television executive, whose caregiving experience resulted in her first (best-selling) book “Elder Rage”, a Book-of-the-Month Club selection being considered for a film. Over fifty endorsements include: Hugh Downs, Regis Philbin, John Hopkins Memory Clinic and Duke University Center for Aging. Marcell also hosts a radio program “Coping With Caregiving” (http://www.wsRadio.com/CopingWithCaregiving), and is a national speaker on eldercare and Alzheimer’s. For more information: www.ElderRage.com.
© Copyright 2007: For permission to reprint all/part of this article, or to interview Jacqueline Marcell, contact at (949) 975-1012; J.Marcell@cox.net