Although I recognize it will never happen and in many ways this benefits me, you’d think I would be more knowledgeable in all aspects of Alzheimer’s disease. AD, however, is wily and manifests differently with each individual. Individual – that nails it. Even though clumping all people with dementia into a single group is handy, it is wrong and it serves no positive purpose in helping people thrive.
My mom, had later onset AD. I really think her cognition marched solidly until after her 76th birthday. 33 years ago now, that seemed “old”, but as that number creeps up on me I realize how young she was. Living alone kept her independent while also adding loneliness to her days. I visited often as did my sisters, but that is not liking living right next door. The Meals-On-Wheels driver visited on week-days and I called every time we reached a phone (living in Antelope Valley at this time, the phone booth rested 20+ miles from our home).
Fortunately, Mama acknowledged when to hang up the car keys (a near-accident, I imagine) and she had a grocery store and restaurants within walking distance plus kind neighbors. At about 76 Mama received black cat arrived as a gift. Good company, the cat also created phone calls that did not make sense. We’d chat along when she’d yell, “That darn cat!” I heard the phone knock on the wall and scurrying and mutters invaded. She rarely returned to say by. When we got together, I noticed an increasing number of bloody scratches covering her hands and arms. The darn cat had become destructive.
My sister decided Mama should move to Weiser, a town about 60 miles away. Each time the conversation came to this subject, Mama, in exasperation, would state, “I just can’t”. “Why?” brought no explanations but over time we discovered the problem. Living in a mobile home, someone had waltzed through the court buying axles. Thinking it a wise transaction, Mama sold her so the mobile could not move. Actually, it’s easy to rent axles so eventually she did head west after much consternation. Again, good neighbors and daily visits by Judy created a pleasant life as forgetfulness set in.
The worst forgetfulness case, one that ended her independence, came in the form of the local senior center. Mama dressed up, as she loved to do, and rode the bus on Monday. Everything appeared fine. On Tuesday she repeated the routine. On Wednesday, however, everything changed. The director called my sister and said, “Your mom may no longer come to the center.” The answer, “She cannot decide what she wants to eat and she’s holding up the line!” Needless to say, her daughters felt heartbroken. Shortly after this Judy hired in-home care so Mama could stay in her home, sans axles, until the end at 79.
Carole had younger onset Alzheimer’s. At 53 was young, strong, and healthy. These traits prove valuable when cognition ticks correctly, but they become problematic as the disease progresses, robbing talents and abilities in slow, unpredictable steps. Some days Carole’s mind walked in tune with our family humor and ideas of fun. Sharing cheesecake at the Cheesecake Factory or picnics with Colonel Sanders in parks by her home regularly occurred. She continued to drive long after she probably should have quit but as getting lost became more frequent and then failing her driving test – running 2 stop signs! – ended that. By 60, she could not remember our names or how to write a check, but daily trips to the Club, the Hearts and Minds Activity Center, kept her active and engaged. Seven more years wove an incredibly cruel path as she lost language and understanding then eventually swallowing and breathing. Torturous…
Members of our support group each have tales to share, each one with a similar theme but slight variations. Most often the struggle surrounds how to do the right thing when knowing the right thing to do is impossible to know. Bright days exists when things seem right and events march along making good sense: breakfast without confusion; a car ride without fighting; a doctor’s appointment with complete clarity. Then suddenly the sync transforms to out-of-whack behaviors. No shoes in the snow; ketchup on ice cream; clothes on backwards and almost upside down. Unpredictability best describes a predictably mixed-up day. But there is always love – both Mama and Carole sensed love through muddled mental clouds until they passed.