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My Blog SCRIBBLE AND EDIT reflects my love of creative writing, design, literature and film. Check out my Poems & haiku, Romantic Flash Fiction; Blogfest Entries; Blog Awards and other prose and Flash Fiction. Do bear with me, as I will reciprocate with those genuine commenters on my blog.  BTW I sometimes withhold comments for challenges until later. Comments about the post are much appreciated. Thank you.
Comments based on others' comments can lead to misunderstandings that spread like whispers!

The only SURE way for me to follow you back is if you leave a comment. However, if your Blog has a black background and white writing then it makes my eyes squiffy...

Soap Box

Alzheimer's is a thief
it robs people of their past, present and future!

How do you imagine your retirement? 
Sitting in a communal lounge all day every day staring at the walls?
Listening to the cries and moans of other residents with the TV on in the background? 
Having your meals and refreshments fed to you and your nappy changed?
Frustrated that your attempts to talk come out as incoherent jabber?
NO? Well, please read on:

I wonder how many of us realise that Alzheimer's Disease/ Dementia is a terminal illness that includes more than just memory loss?

I heard a comment about Senile Dementia by Will Self, on Radio 4's Loose Ends recently, that prompted me to make this comment:
It seems that most people believe that Alzheimer's is just a matter of memory loss.
If only it were that simple! 
 
  • a decline in memory, reasoning & communication skills
  • a gradual loss of the skills needed to carry out daily activities
  • confusion.
The disease can actually last for over a decade, while the sufferer gradually loses all his/her skills, mental and physical, as the brain slowly dies.  It's more like a series of mini strokes that gradually kill off the brain cells so that the person becomes incapable of remembering, communicating, feeding themselves, walking and toileting. 

In my father's case, having PCA (like Terry Pratchett) also means that his brain doesn't interpret for his eyes what he is seeing either. It seems at the moment there's nothing anyone can do to halt it in its tracks. There are drugs like Aricept, but these need to be taken at a crucial time if they are to be efficacious and they don't always work to stop the disease.

Those who suffer are placed in nursing homes and left to spend hour after interminable hour seated around a room with other sufferers with only a TV in the background for company and stimulation.

"Ah well" people say "He's in his own little world, he doesn't know any better"

My own experience says that throughout the illness sufferers have moments of awareness. They may be confused, but they are still there inside and need all the support and stimulation we can give them. See: The Shadow of a Man I used to know

More research and funding needs to be done,
so that we can all, Alzheimer's sufferers included, die with dignity (as the cancer research adverts go) or even have a chance to recover. Now wouldn't that be something?
 

Happier Times:

Me with my Dad (an Anglican Clergyman).
Mum & Dad at Alum Bay
>   

My dad was once a very modest, private, caring, clever, competent, considerate and self sufficient man.

He is Stuart Knox Hicks, the author of
The Double Think Gospel of the 20th Century Church.

Thanks for listening.
Since this was written my mother has been diagnosed with Lewy Body Dementia.
A cure is on the horizon and more effective drugs are being created to help others with the disease. Please help their fundraising appeals as much as you are able. Thank you.

Click on the blank rectangle to listen to the Queen song
that always makes me cry:



If you enjoy UK Railways, then do buy this book,
as the royalties go to Alzheimer's UK



http://alzheimers.org.uk/site/index.php

10 comments:

  1. This is a heartbreaking story Madeleine, and I think people forget that when there's a slow decline like this you're constantly grieving for the loss of the independent person you remember - sometimes for years.

    It's wonderful that your father retains flashes of his old personality. You know he's still in there even if he can't always express himself as he used to.

    Thank you for raising awareness about this important issue, and reminding us about the importance of treating ALL people with dignity, especially the elderly when they are ill and sometimes powerless.

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  2. Bless you Adina,
    Yes it is a heartbreaking experience and I admit I did shed a few tears when I wrote both pieces.
    It is something that certainly needs a higher profile than it is getting. I don't see any adverts in the media as there are for things like cancer.

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  3. My heart goes out to you as we are dealing with this in the family presently as well.

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  4. Thank You dogsmom and my prayers and best wishes go out to you too.

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  5. I just read this and it's heartbreaking. Completely different situation, but with the same results, my mom had uncontrollable diabetes. The insulin they put her on was pulled after she died. We could have sued but chose not to. Several people, including family members scoffed at her, saying she was doing everything for attention.

    When she died, she weighed 63 pounds and was just over 4 feet tall.

    I totally get your point. And, I'm glad I found this. I will keep your dad in my prayers....

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  6. Hi Becky, I am so sorry you Mum had such a terrible time before she died. It is heartbreaking to hear.
    Bless you for keeping my Dad in your prayers.
    Thank you and God Bless you too.

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  7. I could say that I "came upon you by accident" but I don't believe in accidents. I believe we are led to people for a reason. I came to you through Magpie and I am delighted that I did. Congratulations on your Blog which is awesome.

    I am so sorry that you have the experience of this awful disease, Alzheimer's which is not a respecter of anybody. I have watched my new daughter-in-law's mother deteriorate rapidly over the last three years. Medication is of some help and she hasn't got to the stage that you speak of but I know it's going to come eventually.

    Yes this disease does need higher profile and more funding. It is so sad that in this day and age we are no further forward in research - it makes one wonder how many people over the years, suffered from Alzheimer;s but were not diagnosed. They were possibly just 'written off' as being nuts.

    I too will keep your father and your family in my prayers. My prayer for you is that you are given the continued strength and courage to manage what we all unfortunately and sadly know, will not get any easier.

    Blessings.

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  8. Bless you all Thank you :O)

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  9. Hi Madeleine, It is a shame that people smirk at someone else's misfortune and struggle. They are uncomfortable with a situation and sometimes react badly. We should be showing empathy and communicating sensitivity to someone who before the disease took over their lives, taught values, dignity, made their own choices and decisions. My heart goes out to your father for indignities he must now endure. Because it must be a great, kind and loving man who raised a daughter to have such love and care for her father. It is your care and love that will have a significant effect on the physical and emotional health of your father. There must be times that he can feel the love that you have for him. While taking care of your father, please take care of yourself. It is usually the caregivers that are less likely to address their own needs. Madeleine, I am glad you stopped by my blog, it gave me the opportunity to visit yours and read what a wonderful person you are. Thank you, Maeve

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  10. Bless you Maeve, Bless you Bee Thank you for your prayers :O) x

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