For 11 years I pleaded with my challenging elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.”
When my father’s inability to continue to care for my mother nearly resulted in her death, I stepped in despite his loud protests. It was so heart-wrenching to have my once-adoring father be so loving one minute and then some trivial little thing would set him off and he’d call me nasty names and throw me out of the house. I took him to several doctors and even a psychiatrist, only to be flabbergasted that he could act charming and sane when he needed to.
Finally, I stumbled upon a thorough neurologist, specialized in dementia, who put my parents through a battery of blood, neurological, memory tests and PET scans. After ruling out numerous reversible forms of dementia such as B-12 and thyroid deficiency, and evaluating their many medications, he shocked me with a diagnosis of Stage One Alzheimer’s in both of my parents – something all their other doctors missed entirely.
What I’d been coping with was the beginning of Alzheimer’s, which begins 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 of screaming and yelling to get his way, which was coming out now in intermittent over-the-top irrationality. I also didn’t understand that “demented does not mean dumb” (a concept not widely appreciated) and that he was still socially adjusted never to show his Mr. Hyde side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.
Alzheimer’s makes up 60-80 percent of all dementias and there’s no stopping the progression, nor is there yet a cure. However, if identified early there are some FDA approved medications (more in clinical trials) that in most patients can mask dementia symptoms and keep patients in the early independent stage longer.
Once my parents were treated for the Alzheimer’s, as well as the often-present depression in dementia patients, and then my father’s volatile aggression, I was able to optimize nutrition and fluids with much less resistance. I was also able to manage the constant roller coaster of challenging behaviors. Instead of logic and reason, I learned to use distraction and redirection. I capitalized on their long-term memories and instead of arguing the facts, I lived in their realities of the moment. I learned to just go-with-the-flow and let the hurtful comments roll off while distracting with a topic of interest from a prepared list. And most importantly, I was finally able to get my father to accept two wonderful live-in caregivers and not drive them to quitting. Then with the tremendous benefit of Adult Day Health Care five days a week for my parents and a support group for me, everything finally started to fall into place..
Guest writer for Aging Matters, Jacqueline Marcell is the author of Elder Rage.