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Caring for Parents with Dementia and Alzheimer's: If I had Only Known Then What I know Now!

Frustrated with the declining condition of her elderly parents and unsure of where to turn when her father began showing signs of dementia, Jacqueline Marcell began a journey of caring for her parents while fighting for a medical diagnosis to explain their symptoms and behavior. Here's her candid and honest story:


For eleven years, I pleaded with my elderly father to allow a dementia caregiver to help him with my ailing mother, but after 55 years of marriage, he adamantly insisted on taking care of her himself. Every elderly caregiver that I hired resigned 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 a wonderful man, but his temper was a doozy. He’d never turned it on me, but 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 from Southern California to San Francisco to try to save her life — having no idea that becoming their caregiver would nearly cost me my own.

 

The Early Signs of Dementia

 

I spent three months nursing my 82-pound mother back to relative health, while my elderly father was adoring one minute, but then was furious over some trivial little thing — calling me nasty names and throwing me out of the house — the next. I was shocked to see him so upset. Even running the washing machine could cause a tizzy, and there was no way to reason with him. It was heart wrenching to have my once adoring father turn so quickly.

 

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 believe me when I reported that my father nearly electrocuted my mother — luckily I walked in 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 furious to find out my father had instructed his doctor (and everyone) not to listen to me, because I was just a liar.

 

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 TV, even though he had eagerly consented to it 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.

 

Caregiver Catch 22

 

I was 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 convince healthcare professionals to intervene; my father was always so normal in front of them. Even after he was finally given a prescription to calm him, he refused to take it or flushed it down the toilet. I couldn't get my father to accept a caregiver and even when he 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 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 becoming infuriated with an unsympathetic medical system.

 

Finally, a Diagnosis

 

You don't need a doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat dementia properly. Finally, I stumbled upon a neurologist who specialized in geriatric dementia. He 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 dementia, such as a B12 and thyroid deficiency. You should have seen my face drop when he diagnosed Stage 1 Alzheimer's in both of my parents — something all of the other doctors had missed entirely.

 

One person out of eight will get Alzheimer's by the age of 65 — and nearly half by the age of 85 — healthcare professionals need to know the warning signs of Alzheimer's, and share them with patients to save everyone time, money and heartache.

 

Trapped in Old Habits

 

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 trapped in his own bad behavior, that he was yelling and showing aggression to regain a sense of control. 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 enough to conceal his Dr. Jackle side in public. Even with the onset of dementia, I was amazed that he could 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 makes up 65 percent 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 can mask/slow the symptoms of the disease in most, keeping a person in the early independent stage longer, and delaying full-time supervision and care.

 

After the neurologist began treating both parents for dementia and depression (often present with dementia), he prescribed a small dose of anti-aggression medication for my father. It wasn’t easy to get the dosages right, but we were eventually able to calm his outbursts without making him sleep all-day or calling for police intervention. Once my parents’ brain chemistries were better balanced, I was able to optimize nutrition, fluid intake and all their medications with much less resistance.

 

Learning How to Live With Alzheimer's

 

I began to adopt behavioral techniques that could lessen the intensity and frequency of 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 “go with the flow” and let the nasty comments roll off. And if none of that worked, I bribed my father into compliance — coaxing him into things like taking a shower — with ice cream.
Finally, I was able to convince my father to accept a caregiver and I joined a support group. Alleviating the daily strain on myself had tremendous benefit for everyone. It was so wonderful to hear my father say once again, “We love you so much, sweetheart.”

 

About the Author

 

After solving a seemingly endless crisis with her elderly parents, Jacqueline Marcell's passion to save others from a similar experience resulted in her first (and bestselling) book, "Elder Rage," the launch of a radio show geared to help caregivers cope with caregiving, and the beginning of the journey as an international speaker on caregiving, elder care, Alzheimer’s disease and breast cancer. Through these things, she discovered her life’s highest purpose and passion — to become an advocate for the elderly and their caregivers. Please visit Jacqueline's site for more information on "Elder Rage."

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