For eleven years I pleaded with my 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 sighed 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.
I spent three months nursing my 82-pound mother back to relative health, while my father said he loved me one minute, but then he’d get furious over some trivial little thing, call me nasty names and throw me out of the house the next. I was shocked to see him get so upset, 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 so much against me. I immediately took my father to his doctor and was flabbergasted that he could act so darling and sane 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 reported that my father nearly electrocuted my mother, but luckily I walked in three seconds before he plugged in a power strip that was soaking in a tub of water–along with my mother’s feet! Much later I was so furious to find out my father had instructed his doctor (and everyone) not to listen to me 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 and the police took him to the hospital for evaluation. I was so stunned 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.
I was 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 healthcare professionals to believe me–my father was always so normal 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 my father to accept a caregiver and even when I did, no one would put up with him 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 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 rivers daily, and infuriated with an unsympathetic medical system that wasn't helping me appropriately.
You don't need a doctorate degree to know something is wrong, but you do need the right doctor who can recognize the early signs of dementia, diagnose and treat dementia properly. Finally, I stumbled upon a neurologist who specialized in dementia who performed a battery of blood, neurological, memory tests and CT/P.E.T. scans. He also reviewed my parents’ many medications and ruled out reversible dementias such as a B12 and thyroid deficiency. And then, you should have seen my face drop when he diagnosed Stage One Alzheimer's in both of my parents–something all their other doctors had missed entirely.
What I'd been coping with was the beginning of Alzheimer’s (just one type of dementia), which begins 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 which 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 just amazing he could still be so manipulative and crafty. On the other hand, my mother was as sweet and lovely as she’d always been.
I learned that Alzheimer's makes up 65% of all dementias and there's no stopping the progression nor is there a cure. However, if identified early there are four FDA approved medications that in most people can mask/slow the symptoms of the disease, keeping a person in the early independent stage longer, delaying full-time supervision and care. The Alzheimer’s medications are Aricept, Exelon, Razadyne and Namenda–with many more in clinical trials. After the neurologist treated the dementia and the depression (often present with dementia) in both parents, he prescribed a small dose of anti-aggression medication for my father, which helped smooth his temper without making him sleep all day. (How I wish we’d had that fifty years ago!) It wasn’t easy to get the dosages right and not perfect, but at least we didn’t need police intervention any longer. Once my parents’ brain chemistries were better balanced, I was able to optimize nutrition, fluid intake and all their medications with much less resistance.
Finally I was also able to implement techniques to cope with my parents’ bizarre behaviors. Instead of logic and reason–I used distraction, redirection and reminiscence. Instead of arguing the facts–I agreed, validated frustrated feelings and lived in their realities of the moment. I learned to just “go with the flow” and let the nasty comments roll off. And if none of that worked, the bribe of ice cream worked the best to get my father in 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 (he’d only alienated 40 that year–most only there for about ten minutes), and with the tremendous benefit of Adult Day Care five days a week for them and a 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.”
What is so unbelievable is that no one ever discussed with me the possibility of the beginning of dementia in my parents that first year, something that happens far too often to families everywhere. Since one out of eight by age 65, and nearly half by age 85 get Alzheimer’s, healthcare professionals need to know the “Ten Warning Signs of Alzheimer's” and share them with patients to save everyone so much time, money and heartache.
Reprinted with permission of the Alzheimer’s Association