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Books

Brucie

Registered User
Jan 31, 2004
12,413
near London
There are many books written about Alzheimer's and caring and other related topics.

This thread is intended to include details of books that members of the forum have found to be useful.

If you have come across a book that strikes a chord, why not tell us about it?
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
''Altzheimers - Finding the Words"

Originally posted by Jude, this message was extracted from the following thread:
http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?s=&threadid=182


"I've just got a rather good book entitled ''Altzheimers - Finding the Words. Written by Harriet Hodgson, Chronimed Publishing ISBN 1-56561-071-7. You may like to get hold of a copy from amazon.co.uk. It deals with all sorts of ways of communication.

We all seem to develop a knack of 'Atlz-speak' which outsiders just can't understand because it's a foreign tongue. Every morning at breakfast my parents watch the hordes of birds that come into the garden, as well as other visitors. Yesterday my mother said 'Where? Big Tree - up and down'. This translated into 'Where are the squirrels this morning?'. She was rather tired at the time and does tend to abbreviate things a bit...! Sometimes she can be very lucid, but she has really lost the ability to conceptualise. The saddest thing though is that AD suffers don't make any memories.

You mention combing your wife's hair. My mother loves this too and it seems that many AD afflicted people enjoy this form of grooming. Perhaps it helps to calm them down. Physical contact is so valuable when verbal communication is failing. Holding hands is great, as well as lots of spontaneous hugs which always bring a bright smile. We have become a very tactile family..!! One routine we have that we all enjoy is, despite whatever dramas have occurred during the day, we hug and kiss each other when my parents are just getting into bed. It's a nice end to the day.

It's amazing where we as carers find the energy to just keep going. It must be a case of 'love conquers all'. The very word 'carer' implies strength and responsibility. It can be very wearing and tedious at times, but there are rewards and a great deal of satisfaction to feel that you have done your best for another day.

Jude
 

Nutty Nan

Registered User
Nov 2, 2003
790
Buckinghamshire
helpful books

I, too, have read the 'selfish pig's guide to caring', and once I got used to the 'tone' in which it is written, I found it enjoyable and useful: I resisted to refer to my lovely husband as 'my piglet' in public, but just thinking about it often brought a smile to my face - in the book it is used with such a lot of love and respect!

The other brilliant publication is Joanne Koenig-Coste's "Learning to Speak Alzheimer's". It is easily available on-line from the 'you' bookshop, and has been mentioned on this site before. I can't pass on the ISBN No., as my copy is currently with a friend.
 

Helen_old

Registered User
Dec 29, 2003
26
WALES
Hi Carmen

The ISBN no. for Learning To Speak Alzheimers is 0091886724 & i would also recommend it. For those not used to ISBN no. then this is what bookshops use to trace or order books for you.

Take care all

Helen
 

Helen_old

Registered User
Dec 29, 2003
26
WALES
Hi Brucie & Carmen

could i ask for the ISBN no. for selfish pigs guide to caring please if you've got it.

Thanks

Helen
 

LesleyAnne

Registered User
Apr 1, 2003
4
London
free downloads of out of print books from DSDC Stirling

Dear all
The University of Stirling are making some of their out of print books available to download from their website. There is an interesting variety so have a look here www.stir.ac.uk/dsdc go to publications and click on free downloads.
Enjoy!
Best wishes
Lesley
 

chrissieL

Registered User
Jun 22, 2005
54
70
Shropshire
The forgetting

I have just read a very interesting book called 'The Forgetting' by David Shenk, published by Flamingo. It's a very different account of Alzheimers. Quote:
' A remarkable addition to the literature of the science of the mind....Shenk has drawn together neurobiology, art history and psychology into a literary portrait of Alzheimer's perfectly balanced between sorrow and wonder, devastation and awe.' L A Times
You can get a flavour of it at www.theforgetting.com
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Chrissie,

I just want to second that opinion, it is an excellent book. It's different from many of the other books on Alzheimer's as it's not a personal story or a guide to caring. It's more a "portrait" of the disease, examined from different angles: the historical perpsective, the search for a cure, the lives of patients and their families, etc. The author and the setting is American, so that also represents a slightly different perspective for UK readers (but doesn't diminish its overall relevance).

It is a very thoughtful and thought-provoking book and extremely well-written. If you enjoyed that book, you might also enjoy a piece written by the author Jonathan Franzen for the New Yorker, describing how his father's AD affected him and his family. It's a very "literary" piece and perhaps not to everyone's taste, but it is also very touching and quite personal. You can read it online here:

http://www.newyorker.com/printables/fact/010910fa_FACT1

Take care,

Sandy
 

daughter

Registered User
Mar 16, 2005
824
Many, many thanks for this link - the article really helped me to make sense of so many things because I could relate to the situations.

From the relatively trivial - like Dad's refusal to wear a hearing aid bought for him and Mum putting this down to his stubbornness & vanity - to the idea that it is my Mum who is actually losing her self, when the mirror Dad has held up is slowly taken away. The losing of both my parents in some ways.

It also reinforced some of the stuff I already knew, the learned social skills of a child surviving in many Alzheimer's patients long after their memories have gone so that they can't fool people they live with but can pull themselves together when there are guests in the house.

There's the way the writer understood when his mother spoke of his father's incapacity but he also recognised his father's portrayal of his mother as an alarmist nag. I didn't really want to believe all the things my Mum was telling me about Dad - I wanted to see both sides of the argument, as always. This is why it takes so long for 'outsiders' to acknowledge how bad things have become.

It describes the painful moments of lucidity when his Father says; "Better not to leave, than to have to come back". It is reminiscent of my Dad, in the nursing home, suddenly saying "Are we staying here now?". I find that my delight in his brush with reality is quickly replaced with the hope that he will soon fade back into the oblivion, saving himself the pain of realisation.

I found it interesting and helpful when the writer explains that he became a little less afraid in general and in the dreaded inevitable conclusion about how his father "wasn't much deader now than he'd been two hours or two weeks or two months ago."

I did like the non-sentimentalised style of the writing in the article which, as you say is probably not to everyone's taste.

Thank you again.
 

Dearth

Registered User
May 27, 2005
468
48
Wigan
www.freewebs.com
Just wanted to share this with you... I know I'm not a carer, but this is a book I'm currently reading...


Dancing with Dementia

My Story of Living Positively with Dementia

Christine Bryden


Christine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. Since then she has gone on to challenge almost every stereotype of people with dementia by campaigning for self-advocacy, writing articles and speaking at national conferences.

This book is a vivid account of the author's experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband Paul, she continues to lead an active life nevertheless, and explains how professionals and carers can help.

Christine Bryden makes an outspoken attempt to change prevailing attitudes and misconceptions about the disease. Arguing for greater empowerment and respect for people with dementia as individuals, she also reflects on the importance of spirituality in her life and how it has helped her better understand who she is and who she is becoming.

Dancing with Dementia is a thoughtful exploration of how dementia challenges our ideas of personal identity and of the process of self-discovery it can bring about.


There's one particular paragraph in that book that I fond worthy of note:

"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."

:)

N.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,423
66
Toronto, Canada
There's Still a Person in There

I found this book to be very good - the chapters alternate personal histories and information. It was published in 1999 so the drug information is out of date but I really enjoyed the rest of it.

Another I found very good was "Tangled Minds" by Dr. Muriel Gillick.

These are both by American authors but Alzheimer's is universal.
 

Gwen

Registered User
Nov 15, 2005
6
Northwest
books for

I came across a storybook that had been written for people with alzheimer's but I've lost the details. The idea was that the story was written in simple language with adult themes, as people often maintain an interest in reading but cant cope with regualr books. Does anyone know of any?
 

Stimpfig

Registered User
Oct 15, 2005
135
Germany/India
To Sandy

Hi Sandy

Am planning to order some books while still living in Europe. Was wondering if you had a list, possibly recommendations.

Warm regards
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Sue and Nada,

Just first thought I'd mention that main Society web site does have a list of books for carers: http://www.alzheimers.org.uk/Research/Library/reading_lists/Reading list_carers.pdf

This is a really extensive list of useful books. By the way, if someone ever has difficulty getting hold of a book that is out of print, I recommend Abebooks, http://www.abebooks.co.uk/ , which allows you to search the holdings of thousands of second-hand book sellers, in the UK and around the globe.

Sue, I haven't really read that many books myself. The two that I would recommend are The 36 Hour Day and Learning to Speak Alzheimer's.

Take care,

Sandy