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 caregiver I hired to help him sighed in exasperation, "Jacqueline, I 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 his inability to care for her, I had to step in and risk his wrath 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 mother back to relative "health", while my father would tell me he loved me one minute and then get furious over some trivial little thing, call me 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 him to his doctor and was astonished that he could act completely normal when he needed to. I couldn't believe it when the doctor looked at me as if I was the crazy one. She didn't even take me seriously when I reported that my father had nearly electrocuted my mother and that he'd left the gas stove on and nearly burned the house down. Much later I found out that my father had instructed her not to listen to anything I said because, "all I wanted was his money." (Boy, I wish he had some.)
Then things got serious. My father had never laid a hand on me my whole life, but one day he nearly choked me to death for adding HBO to his cable package, even though he had eagerly consented to it a few days before. Terrified I called the police, who took him to a psychiatric hospital for evaluation. After a couple days of tests and observation, I just couldn't believe it when they released him saying they couldn't find anything wrong with him. Similar horrifying incidents occurred four times.
Caregiving Catch 22
I couldn't 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 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 get him to accept a caregiver, and even when I did, no one would put up with him for very long. 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 the 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 a 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 ruled out all the reversible dementias, and then you should have seen my face drop when he diagnosed Stage One Alzheimer's in both of my parents--something that all of their other doctors 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 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 to never show his "Hyde" side 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 and there's no stopping the progression nor is there yet a cure. However, if identified early there are medications that can mask/slow the progression, keeping a patient in the early (fairly independent) stage longer and delaying full-time care. (Ask a dementia specialist about the FDA approved medications: Aricept, Exelon and Razadyne-- and for later stage Namenda.)
After treating the dementia and (often-present) depression, the doctor prescribed a small dose of anti-aggression medication, which helped to smooth my father's volatile temper without making him sleep all day. (I wish we'd had that fifty years ago!) Once each of their brain chemistry was properly balanced, I was able to optimize nutrition, fluid intake and medications with much less resistance.
Creative Behavioral Techniques
I was also able to implement creative behavioral techniques. Instead of logic and reason--I used distraction, redirection and reminiscence. Instead of arguing the facts--I validated their feelings and lived in their reality of the moment "going with the flow." And if none of that worked, the offer of vanilla ice cream usually worked the best to get my father into the shower, even as he swore a blue streak at me that he had just taken one yesterday (over a week ago)!
Then finally, I was able to get my father to accept a caregiver (he'd only alienated 40 that year), 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 several more years of loving each other my parents passed from heart attacks just a few months apart. And even though being responsible for every aspect of their last years 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 professionals who treated my parents that first year ever discussed the possibility of Alzheimer's with me. I was told that the odd behaviors were just old age, senility, and a "normal part of aging". Since one out of every 10 persons by the age of 65, and nearly one out of every two by age 85 gets A.D., I should have been alerted.
Had I simply been shown the "Ten Warning Signs of Alzheimer's", I would have realized earlier what was happening and gotten my parents the help they so desperately needed. If this rings true about someone you love, I urge you to get help from a dementia specialist sooner than later.
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
Jacqueline Marcell is a former college professor and television executive, who after caring for her elderly parents (both with Alzheimer's), became the best-selling author of "Elder Rage" For more information see: http://www.ElderRage.com.