A life in the day of.........................

[towncrier]

publication

Since I started with Talking Point just recently, I have been thinking it would be a good idea to collate a lot of the correspondence and have it published just so the public and the powers- that- be can start to understand Alzheier's better; they certainly need to know it is much more than poor memory!
Not a very festive present, but carers could do themselves a favour by giving the book as Christmas or birthday presents to family, friends and others.
A public presentation of the book to the Prime Minister would be a newsworthy event and almost guarantee publicty for some very telling excerpts.
The information is here on the site of course, but a gift book would be harder to ignore. However,I would like it to avoid what I consider a mistake in the Society's magazine, Living with Dementia -that of quoting upbeat sort of experiences, no doubt in an attempt to provide balance. To my mind it makes Alzheimer's Disease seem not too bad, whereas all carers, and even some of the patients know it is torture.
Norah

 

[Grannie G]

Hello Norah,

It has been suggested that this` Life in the day` Thread be published and it remains a possibility.

The problem is public interest. How many of us can put our hands on our hearts and say we would have taken the trouble to read about Alzheimers before it became a personal issue.

Talking Point offers support for people with dementia and their carers. I wonder how many people log in, who have no connection with the condition. I didn`t.

I have to agree with you about the lack of balance between the positive and the downright agonizing, in publications. I suppose it is to give people hope, but I don`t see any hope for those with dementia.

Take care

Love xx

Edited to apologize to those struggling with the adversity of dementia and trying so hard to remain positive.

 

[Margaret W]

Hi everyone,

I actually think that the 55 pages of this thread would make very informative reading for those in power that have no idea what living with this illness entails.

Can we do something about it? I don't think I've posted on this other than my comments, i.e. no personal experiences, cos other people seem to be in a worse state than me so far, but I've certainly found it enlightening.

I think a book would be a great idea. What do the Moderators think?

Margaret

 

[Grannie G]

Thank you Margaret.

Publication of this Thread has been suggested, but there is still a long way to go.

Love xx

 

[Margarita]

The problem is public interest. How many of us can put our hands on our hearts and say we would have taken the trouble to read about Alzheimers before it became a personal issue.

to read about Alzheimers before it became a personal issue.

That true , if you wanted to get it out to the wider pubic who don't know about AZ or understand AZ your have to turn it in to a love story , adding romance in to it , doing that your also get the attention of the younger generation . I Only say this because I was amazed when my daughter who is 24 told me that her friend watch the film about THE NOTE BOOK 10 time, OK it did not show the struggle [ challenges for a better way of wording it ] before she was in Care home .

I am a romantic person would buy a story book like that as its close to my heart , because of mum also love is always close to every one heart when it come to relationship so hit the public in that angel and your have a best seller , far as I know, they not been a best seller on a book like that.

PS

Then the money you make from it part of it go toward fighting appealing the recent high court judgment on access to Alzheimer’s drugs. on the grown that it breached disability and race discrimination law

 

[Petrus]

Publication

Towncrier and Sylvia,
I, too, think there is a book somewhere in all of the posts on TP. (I have copies of all my own posts plus all of the e-mails to family and friends since I first raised with J. the thought that "Something is wrong and we need to go to the Doctor").

I totally agree with Sylvia that there is a great deal of work to be done to make the book meaningful and readable.

I retired early, specifically to write some books. I have previously been the driving force behind a major technical book which was written with two business colleagues. (On managing houshold waste in a sustainble way, would you believe? The first edition - 400 pages - proposed how this should be done and provided computer programmes on a disk to study the environmental and cost implications of locally-developed scenarios. The second edition is a third longer with case studies from around the world; it has been translated into Spanish and Chinese and underpins the technical work of governmental and business waste management organisations in many parts of the world. The UK government spent £1million to reproduce our computer programms - although they were included in the price of the book; the US government spent $10million. Both governments came to us to both review and help them finish their work!![/SIZE])

The challenge with any book is to find the logical thread which holds the material together and engages the intended reader. One of my pieces of work during my respite break in November is to develop the detailed logical thread for using my own AD material. One of my concerns has been that I am one carer with one sufferer; yet the disease and its management has many facets, many (most?) of which are influenced by the individuals concerned, (If you have seen one AD sufferer ....). TP material would make the story so much richer.

I suggest that we have a private conversation to see if there is any value in combining thinking and efforts; and, if so, how we might proceed.

 

[Grannie G]

I have asked for advice and there should be no problem in publishing any of our own words, if a publisher and distributor could be found.

But it is all too raw for me just now. My husband is showing signs of deterioration in some areas and in other areas is still fighting.

If I were to publish, he would need to be much further down the line.

 

[Margarita]

My husband is showing signs of deterioration in some areas and in other areas is still fighting.

That a really good way to express what I could never express on TP . people keep saying to me to write a book you even said it to me Sylvia , that it made me want to take all my post of TP. I just want to share , but better shut up as I'll put my foot in it .

 

[Grannie G]

Every morning, because there is so much of it, I put out our medication in 3 eggcups. For Dhiren, a.m. and p.m. meds, and just a.m. for me. I then put them in a safe place until we`re ready to take them.

I was in the middle of this task this morning, a cup of coffee helping me concentrate, when Dhiren saw 3 Parakeets in our pear tree, outside the kitchen window.
[Cataratcts and camouflage don`t normally get on, but hey, what`s normal in this life?]

So I rushed to get our new digital camera, and then had to find my specs, and then try to work out the zoom control, and of course I was too late.

But while I was distracted, he had taken all the tablets, his a.m. and p.m. as well as mine, all washed down with my coffee.

 

[towncrier]

publication

Just the sort of response I hoped for. I will be happy to help. Luckily for me, although I never have a minute away from my partner, except for a once-monthly meeting of the local Alz support group, which I attend if I can get someone to be with him, I get the time to use the computer as he is generally passive during the day as long as he can see I am here.
I assume that we will have to get the consent of any contributors to use their stories, in some cases their actual words. Easy to contact them by private message for this.
I worked as a journalist for about three years,before I went into teaching. Only stopped supply teaching two years ago when "they" discovered I was over 70. I think that is illegal now, but I can no longer leave my partner alone, so no use pursuing a grievance there.
I have been moved to tears by some of the accounts I have read here but have also been warmed by the friendship and compassion shown and I would like "our" book to reflect the variety of symptoms, problems and emotions thrown up by Alzheimer's, and also the general unfairness and unevenness of help available.

 

[Amy]

I suppose it is to give people hope, but I don`t see any hope for those with dementia.

In terms of recovery, there is no hope, but those with dementia can still have a quality of life. It is our responsibility to ensure that that quality is as good as possible.

I always felt that it was a blessing that once a certain stage was reached, mum did not seem aware of her situation - for many years in fact. For her that was a blessing. Painful for the family, yes, a constant grieving - but our challenge was still to give her the best life possible.
Recently I witnessed my dad in intense pain and fear - I did not have to watch my mum go through that - not as she faced her death. Dementia rips our hearts out, but it can also have its blessings.

Dementia made me realise the importance of a touch, a smile, an odd word. It made me realise the importance of giving without expecting to receive anything in return. My mum was a much loved and respected wife, mother, teacher and friend, when she was well - she never lost those things when she was ill, she just taught us in a different way - and when did she teach me the most important things in life I have to ask?

Maybe during her illness, when she showed me how a smile can bring light and hope into peoples lives; how a wink can convey humour; how a touch of a hand, a pair of arms can make a person feel safe; when she showed me that it is not intellect that gives a person value - but something intrinsic to the person; when she showed her grandsons how to care for someone, to lift her gently from chair to bed, how to feed her. When she showed her whole family the importance of loving and supporting and caring for one another.

I am not saying that I am glad that my mum had dementia - but I do believe that her whole life was of great value.

Love Helen

 

[Brucie]

Please can we be clear that Talking Point is a forum for carers and those who are being cared for.
I'm an author myself, 2 books internationally, and of course the forum might provide a wealth of content....however, the content is all posted in good faith by the members concerned.

A number of us have considered for some time that their stories might be useable in one form or another, and I've encouraged Sylvia to consider hers at some time.

My own belief is that for any third party/member to wish to use material written by a member here, they would need to ask permission for each and every post individually from each other member, and for the other member to have veto rights on the way the material is used. And thus rights to read the draft(s) and have input to them.

Over time, our stories develop and something we wrote at one stage we might be happy to have used, while something else at another stage, on a different topic, we might not. Thus each and every reference would need to be signed off.

And who would be the beneficiary of the sale of the books?

For the moment, I think that members of TP might help the general knowledge about dementia to be grown by offering to write focused articles for the AS "Living with Dementia" newsletter. The articles might lead to opportunities to be consulted by the press, which again would give additional coverage.

Some bottom lines here:

1. my view is that it might be ok to use one or two small concise quotes - with permission - but not to air whole threads/stories - UNLESS the other person/people was/were in total agreement. With any one person involved able to veto the entire thread being used.

2. only okay in any instance if the rights to the book and royalties are placed with the Alzheimer's Society - since it is their forum that has made it possible.

3. it sets a bad precedent to position TP as a place to get carer stories.

I may yet write a book about Jan's story, but I won't do it until I have that story in full, and can take an overall perspective.

... just my thoughts

 

[Amy]

.... and just had another thought. If we who love them cannot find any hope, purpose or value, then how can we expect those who suffer to. And how can we expect the 'outside world' to show our loved ones the care and respect that they deserve?

Love Helen

 

[BeckyJan]

I certainly would not wish my comments on TP to be used for a book although I do admire any genuine attempt to highlight the plight of dementia sufferers and their carers and families.

The thought that the comments made freely on TP being used is likely to inhibit those who contribute. My main reason for commenting on threads or creating one, is to let go of inner feelings, very often when I am at my worst, not my best. If I felt that every post I made is likely to be 'examined' as a possible source of material - then I think it may well diminish the value I gain from this 'Discussion ' site. I suspect that others may feel the same.

I agree with Bruce - 'Living with Dementia' is a good magazine in which valuable thoughts and experiences can be aired and shared. To those who have the talent, why not contribute to it?

Best wishes Jan

 

[BeckyJan]

I should have added that I thought your post was lovely too, Helen. Thank you.

Jan

 

[Tender Face]

The thought that the comments made freely on TP being used is likely to inhibit those who contribute. My main reason for commenting on threads or creating one, is to let go of inner feelings, very often when I am at my worst, not my best. If I felt that every post I made is likely to be 'examined' as a possible source of material - then I think it may well diminish the value I gain from this 'Discussion ' site. I suspect that others may feel the same.

Well said Jan - methinks I need to re-read and re-think some of what has been mooted here ......

Love, Karen, x

 

[Petrus]

Apology

I had no wish to offend nor to unleash deep-seated fears and concerns. For me the topic of a publication using TP material in any way, shape or form is closed.

 

[Brucie]

Hi Petrus

Another possibility is that if you find any like-minded members who feel their stories might be aired well in a collaborative book not using TP, then it might be a goer.

 

[Skye]

Maybe during her illness, when she showed me how a smile can bring light and hope into peoples lives; how a wink can convey humour; how a touch of a hand, a pair of arms can make a person feel safe; when she showed me that it is not intellect that gives a person value - but something intrinsic to the person; when she showed her grandsons how to care for someone, to lift her gently from chair to bed, how to feed her. When she showed her whole family the importance of loving and supporting and caring for one another.

I am not saying that I am glad that my mum had dementia - but I do believe that her whole life was of great value.

Helen, what a beautiful post!

Your mum's life was certainly of value. She has made you the lovely, caring person you are today.

Love,

 

[Cliff]

I had no wish to offend nor to unleash deep-seated fears and concerns. For me the topic of a publication using TP material in any way, shape or form is closed.

Am so glad that Petrus has made this last statement.

Sometimes we expose very sensitive parts of our relationship with the one being cared for. Here in TP it seems acceptable to do this as, hopefully, the readers understand.

But the thought that they may be published elsewhere would certainly inhibit the freedom to express ourselves which is the true value of TP.