"Living with Dementia"

[Brucie]

I have just opened the March/April issue of "Living with Dementia", which is a bi-monthly newsletter published by the Alzheimer's Society Living with Dementia team.

I was very moved by an article on page 6, written by John, diagnosed at 52 and who is now 58 and lives in Cumbria with his family. The article, in his words, tells "What it's really like to live with dementia".

So often we hear the views of sufferers through their carers [I do it all the time for Jan], but it is especially important to hear them directly.

When we consider a relative with dementia to be really advanced in the condition, we must remember that, inside, they are still there.

The same newsletter includes some "Tips for Living", details of a forthcoming "Identity Card" and details of the AS "Memory Handbook".

It's worth a read.

 

[Sandy]

Just to let everyone know, previous issues of this newsletter are available in PDF format on the Alzheimer's Society web site (middle of the page):

http://www.alzheimers.org.uk/I_have_dementia/Newsletter/index.htm

Please note, it looks like the links for Dec 2005/Jan 2006 and the Oct/Nov 2005 newsletters have been accidentally reversed.

Thanks,

Sandy

 

[Dearth]

So often we hear the views of sufferers through their carers [I do it all the time for Jan], but it is especially important to hear them directly.

Very true... I too get this sent to me on request Brucie - it's an excellent little magazine as is the 'Share' one - which not ony gives me 'insight' but I feel is invaluable to me in my chosen profession/my role as Committee Member of the local A.S. Group.

I've mentioned it before... but if you want to read an excellent book written by someone with Dementia -

Dancing with Dementia: My Story of Living Positively with Dementia by Christine Bryden

I have been lucky enoug to be in touch with the author and she has kindly given me permission to quote directly from her book... which has been invaluable when campaigning re: the "Hands Off Dementa Drugs" campaign (again to give 'insight' into how the drugs benefit someone) - here is one paragraph that strikes a chord with me -

"Until you can truly try to see the world from our perspective, the people living this journey from diagnosis through to death with dementia, you cannot empathise, you cannot provide the care we need to travel this traumatic road. I simply hope that one day all people with dementia will be treated with dignity and respect, and our care partners and care workers will do all they can to understand our needs despite a lack of verbal communication."

Also - click below to learn more about the author:
http://www.guardian.co.uk/g2/story/0,,1470189,00.html#article_continue




By the way Brucie - I also got a copy of the 'Memory Handbook' sent to me - that has some excellent advice - I've copied some into my 'Dementia Notebook' which is a little book I carry around with me with useful facts, figures, hints, tips etc. etc. - the main thing is, I can pass all this info. on so it really does come in handy.

N.

 

[Lila13]

I wonder how many of us can talk about dementia in circumstances where the person with dementia can hear us?

I use the same phrases my mother uses, e.g. she can refer to memory loss, aphasia, "my words keep getting muddled up". I have been very careful not to mention "dementia" in her hearing, and won't look up anything to do with Alzheimer's on her computer, just in case she sees it. But perhaps it would be better to be more open with her about it. Just wonder what others experience has been, if receiving such magazines delivered to the person's address.

Lila

 

[Lynne]

Talking in whispers ...

Well not literally but, like Lila, the terms Alzheimer's or Dementia do not come into our conversation. We speak of "memory loss, getting in a muddle, must have misunderstood" and so on.
And it pains me to say this, because my Mum is very much a 'call a spade a spade' person, and brought me up to be the same way, BUT ...

She is 86, an ex psych. nurse, & to her Dementia would mean 'Senile dementia' the way it was said & meant 50 years ago. (Put them in a chair in the corner and keep them warm, or into a 'home' if their behaviour becomes troublesome.)
She would be SO frightened, and I won't do that to her. And she knows that Alzheimer's disease has no cure at present, so ditto that too.

So far, I've been very fortunate in that our doctor has taken the trouble to speak clearly to her and explain that, whereas once it was accepted that all elderly folk would become forgetful, these days they will do tests to make sure there is no medical reason (like anaemia, dehydration or under-active thyroid) and that there ARE prescription medicines which can help slow down memory deterioration (like Aricept). Just praying that we can get her on it before N.I.C.E. take it away from those who need it most.

 

[Margarita]

Thank you Bruce for starting this thread & thanks Sandy for the link, have just emailed them to send me the magazine by post.

I do not talk about Alzheimer's or Dementia in front of my mother as she still thinks of it like Judy said

'Senile dementia' the way it was said & meant 50 years ago.

The only close time I have ever said anything about it to mum, was when she keep asking me what I am reading on the computer? after a while I told her it was about a old lady that did not like to have a bath & was asking how she could help her mum , like I did when it happen to you & we got a shower ,she just said don’t forget tomorrow I have to have a shower Few days later I was suspired when she said to me when I was on the computer are you still reading about the old lady? how is she getting on confused ,because i thought she would have forgotten .

 

[jude1950]

I shall have to read it online. My partner would be horrified if he knew I visited this site never mind having magazines on dementia. Things are looking up though he has accepted the phsychiatric consult on the 28th of next month and is now looking forward to getting some advise/help with his memory problems...we will face the reality of this later, but for now I anm enjoying the relative calm...no more denial of the problems. we may see them differently but we are acknowledging their existance