Last week you were introduced to Jacqueline Marcell, an international speaker on eldercare, Alzheimer’s, and breast cancer, and author of the best-selling book “Elder Rage, or Take My Father... Please! How To Survive Caring for Aging Parents.”
So far, we’ve learned about Jacqueline’s fight through an unsympathetic medical system and how she endured her ‘Jekyll & Hyde’ father's physical and emotional wrath until she finally found help for him and for her ailing mother. What she didn't understand was that his deeply engrained life-long negative behavior pattern of screaming and yelling to get his way (though never before at her), was becoming intermittently distorted with the onset of dementia, namely - Alzheimer's.
Let’s continue with Jacqueline’s article ‘Elder Care & Elder Rage: Coping with Caring for a Challenging Elder’ (reprinted with permission). For more information, please see http://www.ElderRage.com and watch for her book in our library!
Caregiver Catch 22
Eventually I was finally able to bring my frail mother home from the hospital, but furious to find myself trapped. I couldn't fly home and leave her alone with my father - she'd surely die from his inability to care for her. I couldn't get my father to accept a caregiver, and even when I did - no one would put up with his temper very long. I couldn't get healthcare professionals to help - my father was always so darling in front of them. I couldn't get medication to calm him, and even when I finally did - he refused to take it and flushed it down the toilet. 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 - legally I couldn't force them. I became a prisoner in my parents' home for nearly a year trying to solve crisis after crisis, begging for professional help - and infuriated with a medical system that wasn't helping me appropriately.
Geriatric Dementia Specialist Makes 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, a friend suggested I call the Alzheimer’s Association who directed me to the best neurologist in the area who specialized in dementia. He performed a battery of blood, neurological, memory tests, CT and P.E.T. scans. After reviewing my parents’ many medications and ruling out numerous reversible dementias such as a B-12 and thyroid deficiency, you should have seen my face drop when he diagnosed Stage One Alzheimer's in both parents - something all their other healthcare professionals missed entirely.
Trapped In Old Habits
What I'd been coping with was the beginning of Alzheimer’s (just one type of dementia), which begins very 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 his habit of yelling to get his way was coming out over things that were irrational - at times. I also didn't understand that demented does not mean stupid (a concept 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 astonishing he could be so manipulative and crafty. On the other hand, my mother was as sweet and lovely as she’d always been.
Key: Balance Brain Chemistry! Alzheimer's makes up 60-80% of all dementias and there's no stopping the progression nor is there yet a cure. However, if identified early there are four FDA approved medications (Aricept, Exelon, Razadyne and Namenda) that in most people can mask the symptoms, keeping a patient in the early independent stage longer, delaying the need for part to full-time care. The Alzheimer’s Association reports that along with optimal lifestyle changes (proper nutrition, weight, exercise, socialization), a five year delay in the onset of needing care could save $50 BILLION in annual healthcare costs. Even a one-month delay in nursing home placement could save the U.S. $1 BILLION annually.
After the neurologist masked the symptoms, he treated my parents’ depression which is often present in Alzheimer’s patients. It wasn’t easy to get the dosages right and it took a lot of time and patience and no, my father wasn’t suddenly turned into an angel, but at least we didn’t need police intervention any longer!
To be continued.
(Note: Three drugs are available in Canada to treat symptoms in people with mild to moderate Alzheimer’s disease: Aricept, Exelon, and Reminyl. Ebixa and Aricept are available to treat moderate to advanced Alzheimer’s disease. Individuals must meet specific clinical criteria for OHIP paid entitlement.)