Horrible Alzheimer’s disease could there be anything more cruel or arbitrary than this illness that robs us of our loved ones and leaves us with their shadows? This is an intensely personal article and a plea from the heart on behalf of us all.
I am not a medical expert, so I won’t write an article with any pretense to knowledge I don’t possess, but I have seen the results of Alzheimer’s on two occasions. The first time I witnessed this especially insidious illness the victim was my lovely Nana Bertha. This big, jolly lady who dispensed her love via her sweet smile and her big balls of East European food, in the form of knadels or meat or lockshen was slowly diminished to a husk as her brain became a useless empty shell.
Then her daughter, my very special Aunty Renee, suffered the same fate. I watched from a concerned distance as my Aunty was stolen from us inch by terrible inch. I didn’t see her as much as I should because I was unsure of how to deal with her; I was also diminished by her illness. I still loved her dearly, but my Aunty Renee was not “there” any longer. When I looked into her eyes and she returned the stare, still with love, but unsure who I am, and usually wrong when she ventured a guess. For my more last visits she thought I was my nephew, Daryl. I didn’t try and argue with or question her; my instinct was just to go along with our small deceit if it made her happy. I wondered who she thought Daryl is when he saw her, but there was no point in correcting her as she now had a memory like a goldfish trapped in a bowl. Our family just wanted her to be happy as her world steadily contracted to her small room.
Compared to the fate of my aunt and grandmother the sudden death of my father from a heart attack was a blessed relief. Of course, at the time we were hugely shocked, and grief stricken when a loved one was yanked from us by their sudden demise. The lingering nature of Alzheimer’s is intensely draining and lengthy. It makes the people in the families who care for the victims of Alzheimer’s wonder if they can continue to be strong and determined enough for the entire length of this terrible and unrewarding journey ending in the death of their loved ones.
I watched my mother and her family try to cope with my grandmother’s illness and despite their unending determination and love it was crushingly hard for them. Then I see the same thing happen to my cousin Sharon as she fought every inch of the way to deal with her mother’s slow drift to the end. This was made more poignant by the fact that my cousin is a health professional who understands exactly what was happening and is savvy about the system and dealt with it expertly. It was still hard for her almost beyond bearing; so how much worse is it for those less eloquent or able? Another route for some is to spend the money necessary to provide the necessary care but there are very few people with the financial muscle to furnish the essential 24-hour a day caring resource.
My reason for choosing to write this article was the revelation by the British TV news anchor, John Suchet, that his wife, Bonnie, was another victim of Alzheimer’s. She has been a victim for more than three years and as he bravely faced the questions on TV he made the point that in the entire UK there are only 60 nurses trained to help deal specifically with this awful disease. That equates to 60 trained people battling an illness that 700,000 people in this country are presently suffering from!
I was appalled when I heard these statistics, which by any measure remains a national disgrace that shames us all. There is still an urgent and pressing need for help to be given to the families of all those suffering from this dreaded and silent killer and robber of personalities.
All of you who form our government, you must listen because one day this will affect someone in your family, or a friend or a loved one, and none of can ignore this desperate need. This is not just a job for families or charity; this is a function of a caring society. We are told that the new Government can and will find such resources and it is long past time that our country delivers this care as a first step toward giving Social Care the same priority as the National Health Service.