BY THE AUTHOR OF ELDER RAGE
If I Only Knew Then
What I Know Now
By Jacqueline Marcell
A VALUABLE LOOK AT ALZHEIMER'S AND OTHER SENIOR DEMENTIA
For eleven years I begged my obstinate elderly father to allow a caregiver to help him with my ailing mother, who needed full time care after a massive heart attack, but he adamantly insisted on taking care of her himself. Every caregiver I hired lasted about three days and then I'd get the familiar call. "Jacqueline, I just can't work with your father. His temper is impossible to handle. He screams and yells and stands over me--and he won't let me do anything. I don't think you'll be able to get him to accept help until he's on his knees himself."
Growing up my father had always been 90 percent wonderful, but that 10 percent of a raging temper was a doozy. He had never turned his temper on me, 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.
Jekyll & Hyde
I spent three months feeding my mother every bite of her meals and nursing her back to relative "health" in a convalescent home, while my father yelled and repeatedly threw me out of the house for trying to help. I was stunned to see him get so upset over the simplest 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. He'd never laid a hand on me my whole life, but one day he choked me for adding HBO to his cable package, even though he had eagerly consented to it just a few days before. I have never been so devastated in my entire life.
I 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 like I was the crazy one. Much later I found out that my father had told her not to listen to anything I said--because all I wanted was his money. (Boy do I wish he had some.)
It was a Catch 22: I couldn't leave him alone with my mother, because she'd surely die from his inability to care for her. I couldn't get the doctors to believe the horrors because he was always completely normal and sane in front of them. I couldn't get medication to calm him, and even when I did, he refused to take it and flushed it down the toilet. I couldn't get him to accept a caregiver (I went through 40--some were there for an hour), 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 an assisted-living situation and legally I couldn't force them. I became trapped at my parents' home for a year trying to solve the endless crisis-crying rivers daily, and infuriated with an unsympathetic medical system that wasn't helping me appropriately.
Solutions You don't need to be a Ph.D. to know something is wrong, but you do need an MD who can accurately diagnose and treat it properly. Finally, I stumbled upon a compassionate geriatric dementia specialist who spent the time to perform a battery of blood, neurological and memory tests, along with P.E.T. scans and thorough medical exams. I was astounded when he diagnosed Stage One Alzheimer's in both of my parents-something that all of their other doctors missed entirely.
Since I had no experience with dementia or eldercare, I just didn't get it. I didn't realize that what I'd been coping with was the beginning of dementia, which is intermittent, and appears to come and go. I didn't know that 40- 60% of patients become agitated and that 5-20% become overly aggressive. I also didn't understand that my father was addicted and trapped in his own bad behavior of a lifetime, and that his old habit of screaming and yelling to get his way was coming out when he'd get angry, but over things that were now distorted and illogical and irrational... at times. His lifelong need to be in total control was manifesting itself in an explosive way--because of the onset of dementia. I also didn't understand that demented does not mean stupid, at all, and that he was still socially adjusted to never show his "Hyde" side to anyone outside the family. Even with dementia, it was amazing that he could still be extremely manipulative and crafty.
Alzheimer's = One Type of Dementia
There are many types of dementia, Alzheimer's is just one type, and there's no stopping the progression, nor is there yet a cure. However, if dementia is identified in the early stage, there are four FDA approved medications (Aricept, Exelon, Reminyl and Memantine) that can slow its progression by 2- 4 years and improve cognitive functioning. Keeping a person in Stage One longer, which is milder, delays full time care and nursing home placement. The Alzheimer's Association reports that by delaying the onset of AD for five years, we could save $50 billion in annual health care costs. Even a one- month delay in nursing home placement could save $1 billion a year!
In addition to the dementia medication the doctor prescribed anti- depressants, which made a huge difference in my parents' moods. Then, my father received anti-aggression medication, which smoothed out his damaged impulse control. Once their brain chemistries were properly balanced, I was able to use some behavioral techniques-distraction, redirection, reminiscence and validation, and then I was able to get them out of bed ("waiting to die") and into Adult Day Health Care--which saved all our lives for several years.
Hindsight is Always 20/20
Barbara Looking Back
I am shocked that none of the many professionals who treated my parents ever discussed the possibility of dementia with me. Had I simply been shown the "10 Warning Signs of Alzheimer's", flashing lights would have gone off in my head, as I would have realized a year earlier what was happening. I could have gotten my parents the help they so desperately needed and delayed the progression of the disease much sooner.
If any of this rings true for you or about someone you love, I encourage you to reach out for help by calling the Alzheimer's Association 800-272-3900 and getting a referral to a dementia specialist right away. Tell them Jacqueline sent you!
TEN WARNING SIGNS OF ALZHEIMER'S DISEASE
- Memory loss. One of the most common early signs of dementia is forgetting recently learned information. While it's normal to forget appointments, names, or telephone numbers, those with dementia will forget such things more often and not remember them later.
- Difficulty performing familiar tasks. People with dementia often find it hard to complete everyday tasks that are so familiar we usually do not think about how to do them. A person with Alzheimer's may not know the steps for preparing a meal, using a household appliance, or participating in a lifelong hobby.
- Problems with language. Everyone has trouble finding the right word sometimes, but a person with Alzheimer's disease often forgets simple words or substitutes unusual words, making his or her speech or writing hard to understand. If a person with Alzheimer's is unable to find his or her toothbrush, for example, the individual may ask for "that thing for my mouth."
- Disorientation to time and place. It's normal to forget the day of the week or where you're going. But people with Alzheimer's disease can become lost on their own street, forget where they are and how they got there, and not know how to get back home.
- Poor or decreased judgment. No one has perfect judgment all of the time. Those with Alzheimer's may dress without regard to the weather, wearing several shirts or blouses on a warm day or very little clothing in cold weather. Individuals with dementia often show poor judgment about money, giving away large amounts of money to telemarketers or paying for home repairs or products they don't need.
- Problems with abstract thinking. Balancing a checkbook may be hard when the task is more complicated than usual. Someone with Alzheimer's disease could forget completely what the numbers are and what needs to be done with them.
- Misplacing things. Anyone can temporarily misplace a wallet or key. A person with Alzheimer's disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl.
- Changes in mood or behavior. Everyone can become sad or moody from time to time. Someone with Alzheimer's disease can show rapid mood swings- from calm to tears to anger-for no apparent reason.
- Changes in personality. People's personalities ordinarily change somewhat with age. But a person with Alzheimer's disease can change a lot, becoming extremely confused, suspicious, fearful, or dependent on a family member.
- Loss of initiative. It's normal to tire of housework, business activities, or social obligations at times. The person with Alzheimer's disease may become very passive, sitting in front of the television for hours, sleeping more than usual, or not wanting to do usual activities.
Copyright © 2004 Jacqueline Marcell
Jacqueline Marcell is a former college professor and television executive, who after the experience of caring for her elderly parents became an author, publisher, radio host, national speaker, and advocate for eldercare awareness and reform. She is the devoted daughter in her riveting bestseller, Elder Rage, or Take My Father... Please! How to Survive Caring For Aging Parents, a Book-of-the-Month Club selection, which is being considered for a feature film.
Jacqueline also hosts "Coping with Caregiving", an Internet radio program heard worldwide on http://www.wsRadio.com/CopingWithCaregiving. She received the National Adult Day Services Association's Media Award, and The National Association of Women Business Owners presented her with "Advocate of the Year" at their Remarkable Women Awards. For more valuable caregiving information see: www.ElderRage.com.
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