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.
GERIATRIC DEMENTIA SPECIALIST MAKES DIAGNOSIS
You don’t need a medical doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat properly. Finally, a friend suggested I call the Alzheimer’s Association who directed me to the best neurologist specialized in dementia in the area. He performed a battery of blood, neurological, memory tests and CT & P.E.T. scans. After reviewing my parents’ many medications and ruling out numerous reversible dementias such as a B-12 and thyroid deficiency, you should have seen my face drop when he diagnosed Stage One Alzheimer’s in both of my parents–something all their other healthcare professionals had missed entirely.
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.
KEY: BALANCE BRAIN CHEMISTRY!
I learned that 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 four FDA approved medications that can mask/slow the symptoms, keeping a person in the early independent stage longer, delaying the need for part to full-time supervision and care. The medications are Aricept, Exelon, Razadyne and Namenda, with many more in clinical trials. In combination with optimal lifestyle changes (proper nutrition, weight, exercise, socialization), a one month delay in nursing home placement of Alzheimer’s patients could save the U.S. $1 BILLION annually. A five year delay in the onset could save $50 BILLION in annual healthcare costs. Public awareness, education, and more research dollars are needed!
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!
CREATIVE BEHAVIORAL TECHNIQUES
Once my parents’ brain chemistries were better balanced, I was able to optimize nutrition, fluids, medication, treatments, and exercise with much less resistance. I was also able to implement techniques to cope with the intermittent bizarre behaviors. Instead of logic and reason–I used distraction and redirection to something they were interested in. I also learned to use reminiscence and talk about the old days, capitalizing on their long-term memories which were still quite good. Instead of arguing the facts–I agreed, validated frustrated feelings, and lived in their realities of the moment. Instead of crying, I learned to just ‘go with the flow’ and let nasty comments roll off.
And if none of that worked, a bribe of ice cream worked the best to cajole 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). I was also finally able to get my father to accept two caregivers (he’d only alienated 40 that year–most only there for about ten minutes), and 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.
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.
ALZHEIMER’S / DEMENTIA OFTEN OVERLOOKED
What is so unsettling is that not one healthcare professional discussed the possibility of the beginning of Alzheimer’s Disease (or any type of dementia) in my parents with me that first year, which happens far too often to families being told their loved one probably has some untreatable senility. Alzheimer’s afflicts more than 5.4 million Americans, but millions go undiagnosed statistically for 5-10 years because intermittent subtle warning signs are chalked up to stress and a ‘normal’ part of aging. Since one out of eight by age 65, and nearly half by age 85 get AD, healthcare professionals of every specialty should know the ‘Ten Warning Signs of Alzheimer’s’ and educate their patients and families early on so that everyone can save time and money—and a fortune in Kleenex!
TEN WARNING SIGNS OF ALZHEIMER
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
Jacqueline Marcell, Author, Elder Rage