Help! Call the police! Alzheimer’s is stealing my past, present and future!
I’m sure that even those people with only a passing understanding of Alzheimer’s disease know that it affects memory, and so will understand that the condition steals one’s past. But they may not understand that Alzheimer’s also steals the present and future of those of us with a diagnosis.
Here’s how it happens:
Stealing my past
There are gaps in my memory. We all get them – whether or not we have dementia, but mine are becoming more frequent. The problem is, I often don’t remember that I’ve forgotten until I’m halfway through a sentence. By then of course it’s too late and I have to abort my discourse, red-faced and admit that I can’t recall what I was going to say.
Stealing my Present
I find I now have trouble remembering new things. I often seek reassurance from my wife, asking her to repeat what she has just told me, or repeating it back to her in an attempt to make it “stick”.
I misplace things. Constantly, and my life is now full of questions such as:
“Where is that book I had yesterday?
“Where are my keys?”
“Where did I last have my phone?”
“Now what did I come into the kitchen for?”
“What am I supposed to be doing today?”
I am it seems, constantly interrupting myself with a stream of questions. And when I’m not doing that, I’m worrying if I’ve forgotten something!
What a nightmare.
I forget to take my medication. I forget to do things around the house. I forget to do the things I ought to do to look after myself.
Stealing my future
Alzheimer’s disease will eventually cause my death. The rate of my decline may be fast or slow, but the end result is inevitable – there is no cure for Alzheimer’s disease.
According to the experts, on average, people with Alzheimer's disease live between three and 11 years after diagnosis, but some survive 20 years or more. The degree of impairment at diagnosis can affect life expectancy.
Sooner or later, I'll lose the ability to communicate coherently. I'll no longer be able to converse or speak in ways that make sense, although I may occasionally say the odd word or phrase.
I'll require daily assistance with my personal care, eventually including total assistance with eating, dressing, using the bathroom and all other daily self-care tasks.
As my disease progresses, I may become unable to walk without assistance, then unable to sit or hold up my head without support. My muscles may become rigid and my reflexes abnormal.
Eventually, I will lose the ability to swallow and to control my bladder and bowel functions.
Pneumonia will probably eventually claim me because impaired swallowing allows food or beverages to enter the lungs, where an infection can begin. Or it may be that I’ll succumb to dehydration, malnutrition a fall or another infection.
People like me who have a diagnosis must live with this awful knowledge every remaining day of our lives.
It’s the “elephant in the room”. We seldom speak about it, but it must be acknowledged if one wants to “live well” with dementia. Because, by coming to terms with our reality, we can make the important decisions that will shape the futures of both ourselves and our loved ones. My thanks to Lorraine for reminding me how important it is to be "up front" and honest about the implications and prognosis of a diagnosis of Alzheimer's disease.