During a doctor visit in 2008, neurologists concluded Dad most likely had Alzheimer’s disease. I, however, could not get past the fact that my father had symptoms outside what might normally occur in Alzheimer’s disease (shuffling gait and body stiffness). I brought this up to the doctor, who admitted it could also be Lewy Body Dementia.*
The fact that Dad still retained so much of his memory was baffling for us; from what did Dad really suffer? While he did have problems with problem solving and reasoning, his memory was not as affected. Up until his speaking ability failed, he could still communicate which baseball or football team was being televised and could recall the names of relatives and events we had long forgotten. As time progressed, his cognition would deteriorate, but still remained. Last week he called out “Becky” when he saw a former caregiver he hadn’t seen in at least 6 months, and she only worked with him for ten days!
Dad’s appetite is insatiable. He eats nearly anything and continues to have a strong oral (chewing) fixation. Since he was increasingly unable to communicate, he began to shout. We tried to determine what it was that would be annoying him. We would ask him to repeat one word, for example the name of a beloved pet, which would distract him and give him the ability to communicate a word or two to help satisfy his annoyance.
More Parkinsonism symptoms appeared and others intensified: the shuffling gate remained but became slowed, the body stiffness become more apparent (which threatened more falls and reduced his physical activity level), he had greater difficulty with his speech, more frequent blank stares and significant drooling. He was now unable to care for himself in any regard and required 24/7 care, which my mother provided for several years, until complete exhaustion forced her to look at a number of alternatives.
Dad is now living in a wonderful community based residential facility that my sister and I visit with regularity. He lives only two miles from my mother, has consistent, devoted caregivers, is kept well-fed, clean and receives hospice services several times weekly. My mother visits him daily, at minimum 4 hours each day, feeding and caring for him. While the facility is happy to take on the responsibilities with which she engages with Dad, she takes great satisfaction and relief in helping him herself, conversing with him, reminding him of memories and holding his hand.
* When we later received the written report from the clinic, it included Lewy Body Dementia as a probable diagnosis.
