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My Father’s odd behaviors don’t mean ehe has Alzheimer’s--He’s just getting older, right? by Jacqueline Marcell, Author, “Elder Rage”
 
 


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 JACQUELINE MARCELL says she barely survived the most wrenching year of her life as the sole caregiver to her aggressive elderly father and sweet but ailing mother, both with early Alzheimer’s not properly suspected nor diagnosed for over a year. But after the heartbreak of having her once-adoring father taken away by force for violence several times to a psychiatric hospital (where he’d promptly be released), and burning through her parents’ life savings and most of her own--with sheer determination she finally solved the endless crisis medically and behaviorally.

Infuriation about all she had been through so needlessly compelled her to give up her stalled 15-year career as a television executive to become an advocate for eldercare awareness and reform. Passion to save others from a similar experience resulted in her first (best-selling) book “Elder Rage”; producing/hosting a radio program (“Coping With Caregiving”) broadcast free 6 years/700+ archived interviews; media including TODAY, CNN, PBS Documentary, Woman’s Day, Prevention, AARP Bulletin cover story; Board of Directors of FAIR Foundation--advocating for Fair Allocations in Research funds from Congress and NIH; a syndicated column, Q&A column and 2 blogs; and over 150 keynotes--including to the California Governor’s Conference, the National Security Agency and Florida House of Representatives.

Jacqueline also speaks about writing/self-publishing, and surviving her recent breast cancer (double mastectomy, extensive chemo/radiation, reconstruction, blood transfusion and numerous complications from six surgeries—and a freak fall and badly broken right arm), and the importance for caregivers to closely monitor their own health. She shares insights gained from both sides of the caregiving aisle--promoting the value of gratitude, affirmations, visualization and humor to overcome life’s challenges and to never give up!

ELDER RAGE is a Book-of-the-Month Club selection receiving 250 five-star Amazon reviews and being considered for a film. Over 50 prestigious endorsements include: Hugh Downs, Regis Philbin, John Hopkins Memory Clinic, Duke University Center for Aging, and Harvard Medical School. The Addendum by renowned neurologist/dementia specialist, Rodman Shankle, MS MD (former Medical Director UCI Alzheimer’s Center), makes it also

 



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My Father’s odd behaviors don’t mean ehe has Alzheimer’s--He’s just getting older, right? by Jacqueline Marcell, Author, “Elder Rage” (http://www.ElderRage.com)

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 you'll be able to get him to 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 immediately flew from Southern California to San Francisco 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 he loved me one minute but then get furious over some trivial little thing and call me horrible names and throw me out of the house the next.

I was stunned 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 against me.

I immediately had the doctor evaluate my father, only to be flabbergasted that he could act completely normal when he needed to!

I could not believe it when the doctor looked at me as if I was crazy. She didn’t even take me seriously when I reported that my father had left the gas stove on without it lighting, or that he had nearly electrocuted my mother.

 

Luckily, I walked into the bathroom just three seconds before he plugged in a huge power strip, which was in a tub of water--along with my mother’s soaking feet!

Much later, I was furious to find out that my father had instructed his doctor (and everyone he came into contact with) not to listen to anything I said because I was “just a (bleep bleep) liar”--and 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 television--even though he had eagerly consented to it just a few days before.

Terrified and shaking, I dialed 911 for the first time in my life. The police came and took him to a psychiatric hospital for evaluation, but I just could not believe it when they released him saying they couldn't find anything wrong with him.

What is even more astonishing is that similar horrifying incidents occurred three more times.

CAREGIVER CATCH 22

I was trapped. I couldn't fly 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 healthcare professionals to believe me--because my father 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. 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 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.

GERIATRIC DEMENTIA SPECIALIST MAKES RIGHT 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 properly.

 Finally, I stumbled upon a compassionate neurologist specialized in dementia, who performed a battery of blood, neurological and memory tests, along with CT and P.E.T. scans.

He reviewed all of my parents’ many medications and also 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 that all of their other doctors had missed entirely.

TRAPPED IN OLD HABITS
What I'd been coping with was the beginning of Alzheimer’s, which starts 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 that his 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 dumb (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 amazing 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
I learned that Alzheimer's is just one type of dementia (making up 65% 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. (Ask a Dementia Specialist about the FDA approved medications: Aricept, Exelon, Razadyne and Namenda.)

After the neurologist treated the dementia and then the depression (often-present in dementia patients) in both of my parents, he prescribed a small dose of anti-aggression medication for my father, which helped smooth out his volatile temper without making him sleep all day. (Boy 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 have to have police intervention anymore!

And once my parents’ brain chemistries were better balanced, I was able to optimize nutrition, fluid intake, and all their medications with much less resistance.

CREATIVE BEHAVIORAL TECHNIQUES
As soon as the medications started working, I was finally able to implement some creative behavioral techniques to cope with all the bizarre behaviors.

Instead of logic and reason--I learned to use distraction, redirection and reminiscence. Instead of arguing the facts--I simply agreed, validated their frustrated feelings, and lived in their reality of the moment. I finally learned to just “go with the flow”.

And, if none of that worked, a bribe of vanilla ice cream worked the best to get my obstinate 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 about ten minutes), and with the tremendous 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.”

ALZHEIMER’S / DEMENTIA OFTEN OVERLOOKED
What is so shocking is that no one ever discussed the possibility of Alzheimer’s with me that first year.

I was told their “senior moments” and intermittently odd behaviors were just old age, senility, stress, and a “normal part of aging”.

 Since one out of every eight persons by the age of 65, and nearly half by the age of 85, get Alzheimer’s Disease--I should have been alerted to the possibility.

 Had I simply been shown the "Ten Warning Signs of Alzheimer's", I would have realized a year sooner what was happening and known how to get my parents the help they so desperately needed.

If any of this rings true for you or someone you love, I urge you to seek early evaluation 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

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