Living in the Shadows Response
Created on 1/9/2009
Some of you that follow my articles regularly already know that it is my occasional habit to give space to my exchanges with those who respond to me. In particular I want to show my appreciation to the genuine and widespread depth of feeling my articles on Alzheimer’s and Cancer have engendered this week.
These are illnesses that affect us all, either directly or indirectly at one stage of our lives. It is how we respond to these enemies of us all that demonstrates and defines us as human beings, with all our magnificence and weakness, knowledge and foolishness. We all hope that we are never to be touched by the grim reaper in this tortuous guise, and that if we are, we will somehow manage, at least, for our dignity to survive.
Here are some of the responses I received this week, and I make no apologies for applauding these quiet heroes, for I find their calmness, love and dignity under fire inspirational. Sharon, Neville I know you must have sometimes screamed inside how unfair fate can be, but your examples demonstrate that anything can be overcome, well done and thank you for your inspiring examples.
“Very powerful. I thought it was going the other way, and then you
surprised me.” – Dick
“Your article has struck a resounding chord with me. My late wife,
Brenda didn't have Alzheimer's but she displayed the symptoms of it. Over a period of 10 years, I watched her disappearing in stages.
In 1994 she started to become disorganized - this was a woman who previously raised organization to an art form.
In 1995 she forgot how to drive; which gear to be in, what the pedals were for....
In 1998 she forgot how to use a knife and fork in tandem.
The same year she forgot how to swim.
While all of this was going on she was steadily losing her short-term memory and her ability to join up the logical dots. As the world started to make less and less sense to her, she gradually gave up trying to decipher it and abdicated responsibility.
Between 2001 and 2004, she lived in a nursing home, where everything was done for her. By this time, she had become a 5-year-old, with no short-term and very little long-term memory. She knew her immediate family but she would peer at the nurses who attended her every day as if to say "I know you from somewhere but I'm not sure where."
By the end, she could only remember songs. That's right! Songs. If an advert on TV featured an old song from 30 years ago, however obscure, I would hear her singing along, without animation, as if in a trance, yet she knew all of the words.
I felt like an artist looking at a block of stone or wood and
envisaging the sculpture that he is going to carve out of it. I could
see her in there, but I couldn't reach what I could see. One day, when I am ready, I am going to write the story of her life and death; I may never show it to anyone but I will need to do it.
Thank you for writing this article; I found it strangely comforting; I
couldn't tell you why.” - Neville
Following that response here is a very thoughtful and detailed letter from Sharon;
“It has taken me a day to be able to reply to your article. As you
might imagine, I found it difficult to read and it was very poignant. I
hope your article finds the right targets.
Unfortunately, for my mum, she lives in Barnet. If she lived in Harrow I could approach the very wonderful Admiral Nurses. The social workers are bound by budgets and I was told by mum's social worker that when people in the borough are asked what they what money to be spent on, dementia is rarely mentioned and then probably only by those who have a loved one who is suffering from this cruelest of diseases. Interestingly, I have NEVER been asked how I think money should be disbursed and I wonder whom it is that the borough approach when sending out these forms. I know of no one who has been asked. Although I have to fight Barnet every inch of the way, and believe me, they don't give an inch, I do have the support of the Maurice Lawson Dementia Support group for carers. However, it is an ongoing fight, which ultimately will be lost because my mum simply can't improve but can only get worse.
What I find unbelievable is that Barnet will not fund full time care at
Home, which for a Malaysian or Phillipino carer costs in the region of £350 per week but that they will fund residential care which costs £500-£800 per week which even after deducting pension income is still costing more. There doesn't seem to be any common sense used just bureaucratic red tape and forms - oh lots of forms. I receive some funding via direct payments and as well as coping with all the emotional stuff I also have to deal with the inland revenue and do the wages and national insurance on a weekly basis as well as end of year tax stuff.
Caring for a relative with dementia of Alzheimer’s is isolating and
depressing and certainly, in my experience, there is insufficient care
and support available from the local authority unless there is a
crisis. They are so busy putting out fires that they don't think about
preventing the fire from starting.
Thank you for taking the time to write your article and try and get the message across.” -Sharon
If my writing these articles has helped anyone in any way, then I’m glad to have done so. For those of you suffering from these afflictions in any way I can only pass on the wish that you have the strength, wisdom and tenacity to deal with these problems.