By Jacqueline Marcell
I grew up with a “Jekyll & Hyde” father who was wonderful most of the time, but when he’d get mad he’d explode in a screaming, pounding-his-fist rage. It was never directed at me, I was the golden child, but I watched his temperament change like a light-switch as he’d yell at my mother and brother. We would cower and walk on eggshells trying not to upset him. After my parents retired, my mother had a heart attack and he took care of her for 11 years, refusing all help, despite my constant efforts to hire caregivers who he would throw out. When my mother nearly died from an infection caused by her own waste because he had not kept her clean and taken her to the doctor, I had to step in despite his loud protests.
I started to experience his rages at a heightened level over things that seemed so illogical and irrational. When he took two filthy hand towels out of the trash and threw them at me, accusing me of throwing out all their things, I was stunned and sobbed my heart out to have him turn on me. I thought it was just more of his bad behavior of a lifetime, getting intensified by my mother’s near-death illness and the stress of caring for her for so long without help.
I reported his illogical behavior to the doctor but whenever she saw him, he’d act so normal, so darling, so in control, I couldn’t get help with medications. He was able to act completely sane when he needed to. I didn’t find out until much later that he had told the doctor that I was just after his money and that she shouldn’t pay any attention to me. She knew him for twenty years and didn’t know me very well, as I lived four hundred miles away.
It took me a year to solve it on my own, riding a roller coaster of emotions as some days he’d be my loving dad and so normal, and then all of a sudden something would set him off and he’d go into a screaming tirade calling me every nasty name he could think of. As I tried to make safety changes to my parents home and help them, he threw me out and even choked me over adding HBO to his television for a caregiver who had requested it, even though he had previously given his permission. The police were called and he was 5150’d to a psychiatric hospital for a 72-hour observation.
When he got to the psych unit, he was so adorable, so normal, they released him, telling me they couldn’t find anything wrong with him. After four episodes of violence, and 40 caregivers later, I had to threaten the psychiatrist with a lawsuit if they released him and he came home and hurt anyone. They finally held him 2 weeks (called a “5250”)and reported that he couldn’t learn very well and that his memory was slipping. It was so intermittent, he was able to act normal most of the time, and was still able to hide his life-long temper tantrums.
I finally found help when I got him to the Alzheimer’s Association’s best recommendation for a geriatric dementia specialist who did extensive neurological tests and CAT scans and found that my father had the beginning of multi-infarct vascular dementia and that he’d had numerous tiny strokes and a possible secondary dementia: Alzheimer’s. Once I found doctors who understood the complexity of his brain chemistry, we were able to manage it with medications for the dementia (Aricept and later Exelon), aggression (Risperdal), and depression (Zoloft).
After much experimentation with combinations and dosages, the brain chemistry was properly balanced, without having to zombie him out. Then I started behavior modification on my eight-five year old father. By using “tough love” and “reward and consequences”, he learned how to behave and control his temper most of the time, even with the onset of dementia. When he is on good behavior he gets rewards of praise, affection, attention, and extra dessert works good too. When he is asserting his life-long need to control and boss people around, he gets negative consequences: no dessert, minimal communication, no attention, no affection. He has finally learned that there is no “pay-off” for pounding his fists and screaming and yelling. He will not get his way… period, and no one cowers. We walk away 100% of the time.
The next piece of the puzzle was to get him busy by going to Adult Day Care with my mother. By having daily mental stimulation, physical exercise, proper nutrition and social interaction, he finally had a reason to get up in the morning. Now instead of being a “sundowner” and up all night reeking havoc, he is tired out all day with fun activities and will sleep through the night, which allows everyone else to sleep also.
After turning around a seemingly impossible situation, I decided to write a book about it to help others who are trying to manage “challenging” elders. The result: Elder Rage or, Take My Father… Please! How to Survive Caring For Aging Parents.” Written with a humors tone, people learn to identify the earliest warning signs of dementia, which are very intermittent. Life-long behavior patterns start to get distorted.
I stress that the use of medications can slow the dementia down from progressing as fast as it would otherwise, keeping a loved one in Stage One an extra 2-4 years. Statistically families wait four years before reaching out for help, usually after a crisis, but by then the loved one is already in Stage Two, which requires full-time care. This is going to cost a lot of money and heartache.
Having Long-Term Care Insurance is the answer for the financial impact of caring for someone with dementia. Once there is a record of “memory loss” in a person’s medical chart, Long-Term Care Insurance will be denied.
By being sensitive to the early warning signs, getting to the right doctors, getting the right combination of medications and understanding that demented does not means stupid, many of these disruptive behaviors can be managed. The bottom line message is that there can still be a good life after a diagnosis of dementia if it is properly managed medically and behaviorally.
Ten Warning Signs of Alzheimer’s Disease
Reprinted with permission of the Alzheimer’s Association of Orange County.
- Recent memory loss that affects job skills.
It’s normal to occasionally forget assignments, colleagues’ names, or a business associate’s telephone number and remember them later. Those with dementia, such a Alzheimer’s disease, may forget things more often, and not remember them later.
- Difficulty performing familiar tasks.
Busy people can be so distracted from time to time that they may leave the carrots on the stove and only remember to serve them at the end of the meal. People with Alzheimer’s disease could prepare a meal and not only forget to serve it, but also forget they made it.
- Problems with language.
Everyone has trouble finding the right word sometimes, but a person with Alzheimer’s disease may forget simple words or substitute inappropriate words, making his or her sentence incomprehensible.
- Disorientation of time and place.
It’s normal to forget the day of the week or your destination for a moment. But people with Alzheimer’s disease can become lost on their own street, not knowing where they are, how they got there or how to get back home.
- Poor or decreased judgment.
People can become so immersed in an activity that they temporarily forget the child they’re watching. People with Alzheimer’s disease could forget entirely the child under their care. They may also dress inappropriately, wearing several shirts or blouses.
- Problems with abstract thinking.
Balancing a checkbook may be disconcerting 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 keys. A person with Alzheimer’s disease may put things in inappropriate places: an iron in the freezer, or a wristwatch in the sugar bowl.
- Changes in mood or behavior.
Everyone becomes sad or moody from time to time. Someone with Alzheimer’s disease can exhibit 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 drastically, becoming extremely confused, suspicious, or fearful.
- Loss of initiative.
It’s normal to tire of housework, business activities, or social obligations, but most people regain their initiative. The person with Alzheimer’s disease may become very passive and require cues and prompting to become involved.
HOW IS ALZHEIMER’S DIAGNOSED?
There is no single diagnostic test for Alzheimer’s Disease. Instead, AD is diagnosed by comparing a series of test results and exams including: a thorough medical history, assessment of mental status, physical exam, neurological exam, lab tests including an EEG and brain scan, such as a CT, MRI, PET, or SPECT, psychiatric and other exams. A diagnosis of Alzheimer’s disease through this evaluation is considered 80-90% accurate. The only way to be absolutely certain is through an autopsy.