Living In The Shadows

Created on 17/2/2009

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.

Now her daughter, my special Aunty Renee, is suffering from the same fate. I’ve watched from a concerned distance as my Aunty has been taken from us inch by terrible inch. I don’t see her as much as I should because I am unsure of how to deal with her; I am also diminished by her illness. I still love her dearly, but my Aunty Renee is not “in” any more. Now when I look into her eyes and she returns the stare, still with love, but unsure who I am, and usually wrong when she ventures a guess. For my more recent visits she thinks I am my nephew, Daryl. I don’t try and argue with or question her; my instinct is just to go along with our small deceit if it makes her happy. I wonder who she thinks Daryl is when he sees her, but there’s no point in correcting her as she now has a memory like a goldfish trapped in a bowl. Our family just wants her to be happy as her world steadily contracts.

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 are all hugely shocked and grief stricken when a loved one is 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 to death of their loved ones.

I watched my mother and her family try to cope with my grandmother’s illness and despite their unrelenting determination and love it was unrelenting and crushingly hard for them. Now I see the same thing happening to my cousin Sharon as she fights every inch of the way to deal with her mother’s slow drift to the end. This is made more poignant by the fact that my cousin is a health professional that understands exactly what’s happening and is savvy about the system and deals with it expertly. It’s 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 resources.

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 this morning 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 is a national disgrace that shames us all. There is 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 us 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 going through parlous economic times but nevertheless we can find these resources if we eliminate banking bonuses and government overspending on expenses and wasteful, failed social engineering experiments to pay for it.