So lately my Bert has been coming up with the most interesting nomenclature for everyday items. He looks at the shoe he is putting on and calls it cheese. Trust a Dutchman to come up with that particular mental contradiction. Then he looks at his cheese and calls it bacon. At least they are both foods. He is muttering. I lean in and hear: “St. Anna Boys” being repeated over and over. There is a ogical link, sort of. Bert was a hard playing member of SAB – St. Anna’s Boys Soccer club in his youth. It is close to bedtime. Will I be a soccer ball tonight?
He says something to me but I cannot understand. Not only is it garbled but there is no connection, it seems, to the conversation we were having about needing batteries for his hearing aids. “I didn’t hear what you said.” That wonderful humour comes through. He laughs and says: “Want my hearing aid?” I laugh with him but I am wondering if he mumbled to tease or were his communication skills diminishing.
There are a few other signs that indicate, as I call it, a few more brains cells have died. Bert is speaking less; he has difficulty finding words and so makes up new words that stretch my imagination to the limit to decipher. He does not write anymore and reading is limited to spelling out words, saying them out loud, but I am not sure that he understands their meanings. Are these the skills of a four year old, his assessed cognitive age? I am living out my own Curious Case of Benjamin Button. I was fascinated by that movie. Never thought I would find any thing remotely relating to any experience I would encounter in my life.
After consulting my sources and resources both human and virtual I have come to the conclusion that my Bert may be exhibiting the early stages of aphasia, specifically Primary Progressive Aphasia. Do I sound doubtful? Of course. Nothing is cut and dried when it comes to dealing with dementia.
The main causes of aphasia are a stroke, a brain injury or a brain tumour. It is usually the result of an event that is sudden or an emergency. If that was all then my Bert does not have aphasia. Then I read that there are six or so types of aphasia and Primary Progressive Aphasia (PPA) is the rare form that is found in persons with dementia. PPA is a disorder in which people lose their ability to read, write and understand language over time. It is the only type that, as its name suggests, is progressive, takes time in its development and have nothing to do with a sudden trauma to the brain. It is more prevalent in persons who have Alzheimer’s disease and Frontotemporal dementia.
Here is a twist. PPA may be rare in people who have it without having any form of dementia. However, if you have dementia is this not a natural deterioration to be expected along with all the rest as the brain breaks down over time? Also, since Bert has age-related macular degeneration could his diminished abilities to read and write be a direct result of that ailment? However, how would I account for the confusion and his new found ability to create new words, his search for words, his mumbling and the rest?
So here is a topic to be explored with the various experts we see. I have no wish to fast forward my Bert’s illness but I do believe that forewarned is forearmed. If I begin to wrap my head around this PPA thing, I can begin to search for ways to alleviate the problem since my Bert’s problem is also my problem. I will be working on strategies to aid communication. The Alzheimer’s Society has resources that I can begin to use right now. There are some excellent blogs, newsletters and articles that will help me find best practices. Best of all the Lifeliners will put our collective heads together to explore possible solutions and find support. We are a creative bunch. I can see us using all kinds of homemade tools, flash cards, art, gestures, music and more to communicate with our loved ones. We will share what works. That is what we do. We share to show we care.
The Meander: Unlike a stroke victim, when PPA becomes another bump in the road on the Alzheimer’s journey, there is no cure to anticipate. A legion of therapists will not be able to reverse the affliction. My Bert or anyone with Alzheimer’s aphasia will only get worse, not better. Ay, there’s the rub!