When I had to give up my 15-year career as a television executive to go take care of my elderly parents, I didn’t know that caregivers have a 63% higher death rate than other people their own age. A year later, without a day off, as I struggled to solve the endless crisis–I was surprised that the statistic was that low.
For 11 years I had begged my obstinate 83 year-old father to accept a caregiver to help him with my ailing mother, but he adamantly insisted on taking care of her himself. When she almost died from an infection caused by his inability to keep her clean, I had to step in despite his loud protests. I was stunned that my once-adoring father became verbally and even physically abusive towards me–and I was heartbroken to have lost his love. What I didn’t understand was that his deeply engrained life-long negative behavior pattern of screaming and yelling to get his way (though never at me before), and his need to be in total control, was becoming distorted with the onset of dementia, namely–Alzheimer’s.
Forty caregivers came and went, as my father called them nasty names and threw them out of the house. I cried rivers and fought through an unsympathetic medical system, astonished that he could act completely normal in front of the doctors when he needed to. I didn’t understand that his doctor was not trained to understand dementia, and I really didn't understand that demented does not mean stupid–at all.
Finally, after four times in a psychiatric hospital for violence, where he was released every time because they couldn't find anything wrong with him–a geriatric dementia specialist spent the time and did the numerous tests needed to uncover the subtle, intermittent signs of Stage One Alzheimer’s in my father. He received medication to slow the dementia down and improve cognitive functioning (Aricept, Exelon or Reminyl), as well as medication for the (often-present) depression, and medication to help smooth out his aggression and damaged impulse control. Not everyone becomes aggressive with dementia, but statistics indicate that 5-20% do.
It wasn't easy, but once my father's brain chemistry was properly balanced, and nutrition optimized, I was able to implement some creative behavioral techniques to better manage him. Instead of using logic and reason, I learned when it was best to use distraction, redirection and reminiscence–and how to properly validate his frustrated feelings.
I was so infuriated that none of the many professionals that I had turned to previously had shown me the Ten Early Warning Signs of Alzheimer’s–which would have alerted me to what was happening a year sooner. I mistakenly thought that his intermittent illogical and irrational behaviors were just a normal part of aging and untreatable senility. It was a costly mistake–in every way.
The next piece of the puzzle was to get my parents out of bed (“waiting to
die”) and enrolled in Adult Day Care, which completely turned their lives around at 80 and 85. It was a gradual process to get them into the routine, but then they loved all the activities. They were busy for hours and the pressure on me to entertain them was drastically reduced. Then I was able to spend quality time with them in the evenings and on the weekends.
Then, with the help of the Alzheimer’s Association and an Alzheimer’s support group, solutions started to present themselves while I was around others who were going through the same situation.
Once I figured it all out (medically, behaviorally, socially), I knew I had to write a book and become an advocate for eldercare awareness and reform–so that no one else would have to go through the misery that I had.
The biggest advice I have is to encourage you to look into buying Long Term Care Insurance prior to the diagnosis of dementia, which will cover the cost of caregivers in the home, as well as in a care facility. Also, make sure you have Durable Power of Attorney in place on your loved ones, so that if they become incapacitated, you can step in and make decisions for them. These documents can be executed by contacting an Elder Law Attorney.
Then, please study the Ten Early Warning Signs of Alzheimer’s, and if any of them ring true about someone you love, please reach out for help sooner than later. With early diagnosis and treatment, dementia can be slowed down by 2-4 years, keeping a person independent longer, and buying some time for medical science to come up with even better medications–or possibly a cure.
Ten Early Warning Signs of Alzheimer’s
Reprinted with permission of the Alzheimer’s Association
1. 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 as Alzheimer’s disease, may forget things more often, and not remember them later.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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 requires cues and prompting to become involved.
Jacqueline Marcell is 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. Elder Rage has received numerous endorsements, including: Hugh Downs, Regis Philbin, Dr. Dean Edell, Duke University Center for Aging and the Johns Hopkins Memory Clinic. Jacqueline also hosts an Internet radio program: "Coping with Caregiving" heard worldwide on http://www.wsradio.com/copingwithcaregiving/.
For more information see: www.ElderRage.com
