Looking into the Last Room

QOL? Are You Kidding??

Old age. Dementia. Alzheimer’s Disease. Jokes are legend and stories are both tragic and hysterically funny. I gave Mother a bath several nights ago, dried her, then rubbed her down with lotion. I handed her the roller deodorant and said, “Mom, put a little of this under each arm.” As I turned from the hamper of damp towels, I could not stifle laughter. Mom was rolling the deodorant ever so carefully between each of her toes. “Well, at least your feet won’t stink!” She understood her action, just for a brief moment, laughed and then returned to her world of broken spatial concepts, aimless activities of movement, words that strive for meaning, and glazed eyes that now seem empty and bored.

Research is ongoing; new books are filling the shelves and the objectives of helpful organizations are carefully stated. Most of their words seem to focus on improving the quality of life for those with diseases of dementia. Sometimes their words are as blurred as my mother’s attempt to make sense of her now crazy world. My opinion? There is no “quality of life” for those afflicted with dementia. In mid to late stages of dementia, there are quality moments, or seconds, prodded or provided by caregivers who either love them or receive enough pay to offer a stimulating activity. Without this help, there would not be a single QOL (cute buzzword) moment.

I would like to write a very short book that offers realistic options for life that no longer holds quality, but most of my words would not be acceptable, here or elsewhere. QOL has been defined as the human condition that senses “meaning” or is in touch with “being and becoming.” Dementia is not curable. It robs the soul of dignity and quells the ability for “being” anything. And my 88 year old Mom has no sense of “becoming” anything more than her frightful night dreams will allow.

Should there be physical therapy, medical care, and stimulating acitivites?
Yes, of course. There are many recommendations on the sites listed with this blog (as soon as I learn to hyperlink!). So, I will encourage Mom to draw and paint, to read out loud, look at photos, walk and sing. Perhaps it will occupy some of her blank spaces and hopefully, enlarge my own soul . Whether I, as caregiver, “become” anything else is an open question. It will depend on my ability to cope and personalize QOL before the plaques devour.