Any recommendations for a good and informative book

Discussion in 'Books, film and music' started by Morganlefay, Feb 10, 2019.

  1. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    65
    Buckinghamshire
    My OH was diagnosed 6 years ago, but has only recently started to behave 'differently'. Some days he's his old self, completely aware, easily remembering things and some days he talks nonsense, can't make himself understood, can't see/find things etc.etc. I feel I need some guidance and always look for a book to refer to. Some of the Alz Soc booklets are OK, but some really aren't relevant. I have 'Contented Dementia' which largely seems to cover people who are iller than my OH, so I wonder if anyone has any sort of book which they find helpful as a reference. I try to be very patient but I never know how to behave when he's bad - sometimes we both make a joke of it, which seems fine, but I don't know if that's best for him. Any ideas most gratefully received !
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,359
    Female
    London
    There are loads of books with general info, but some can feel out of date or slightly patronising.

    Then there are fiction novels like Still Alice and Elizabeth is Missing, which are very good books but might not always seem relevant to one's own situation.

    The one I like most is And Still the Music Plays by Graham Stokes, which is a doctor recounting true stories about dementia patients he had encountered in care homes, and if there is one thing to learn from this book is that people with dementia need to get treated as individuals, and their back stories taken into account in order to deliver true person-centred care.
     
  3. charlie10

    charlie10 Registered User

    Dec 20, 2018
    262
    I was looking at the book by Wendy Mitchell in my local bookshop.....has anyone read it and do you recommend it? Don't want to spend on a overly rose-tinted account, but if it's fairly realistic I might send it to BiL to try to inform him without overwhelming him. Good idea?
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    1,706
    Books and posts on here help but everyone experiences the illness in different ways.

    The Alzheimer's Society book

    Contented Dementia

    Carl Madden has a web page and wrote a book about his wife.

    When I married my mother by Jo Maeder about role reversal

    Maggie La Tourelle a therapist dealing with her mother and her feelings, The Gift of Alzheimer's

    Notes to my mother in law by Phyllida Law The actress caring for her older declining relations. Funny and poignant about muddling through as we do.

    None answer everything because every case is unique. Some tell how families adapt and deal with it all.
    Quite uplifting. X

    Could admin move this to books thread?
     
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,095
    Female
    South of the Border
    I have always found this forum to be the best place - ask a question and someone often more than one someone, will answer it. Books - I have tried but get really impatient with - and I am usually an avid reader. I have found that by asking on here, and contributing, one gradually builds up ones own dossier albeit in your head, but it is exactly how your circumstances are and how they are developing....
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    1,706
    I agree with MaryJoan, even though books were an important part of my life. Getting tips and hints on here as things come up works best on a know when you need to know basis.
    Otherwise one can worry about things that never happen!
     
  7. charlie10

    charlie10 Registered User

    Dec 20, 2018
    262
    I agree there.....books and websites on dementia only give the 'easy' information......a lot of what I now know from the forum never appeared in my earlier research, you can't beat personal experience, and the willingness to share it
     
  8. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    65
    Buckinghamshire
    Thank you everyone for very good and helpful suggestions, I downloaded Phyllida Law onto my Kindle last night and am enjoying it because its full of the sort of silly little events which I worry about, and it made me laugh (always a bit in short supply - laughs). I shall look at the other suggestions too - need a prowl in a good bookshop !. And I'm sure that its right that advice on here is one of the best sources of relevant information, though currently my hardest thing is his being 100% OK one minute and then rapidly switching to a different person, who clearly has problems. My Mum had AD and I know that no two stories are the same, so I'm just making it up as I go along. But will be back on here more frequently now as I find people here so kindly and helpful - better than any book, of course ! Thank you, new friends.
     
  9. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    I read it last week and couldn't put it down. Have also signed up to her blog. My husband is in the early stages of dementia and I thought I was getting the hang of how he thinks but this book explains so much of his behaviour and which bits are making life particularly difficult for him. Wendy is amazing as she is so positive and shows that life doesn't have to come to an end with a diagnosis.
     
  10. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    My husband is at a similar stage to yours from the sound of it and I too have read Contented Dementia. I know it's about someone in a later stage (and written from a daughter's point of view rather than that of a spouse) but I have used the strategies from it and it has saved my sanity. In fact it turned our whole situation around and we are now at the point where many of the strategies I used at the beginning are no longer needed. I've also replied to the question about Wendy Mitchell's book as I have just discovered it and loved that too.
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    991
    East of England
    Really helpful thread and I have found Wendy Mitchell’s blog and YouTube video very good. I need a few new ideas to understand how his brain is working so that I can be more understanding. I often feel that it’s my personality that gets in the way of being more patient.
     
  12. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    293
    Female
    Basingstoke, Hampshire
    Ditto
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    1,706
    Please that you posted, we are all muddling together a lot of the time. X
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    1,706
    Up to date research continues to say that personality does change especially after a life changing event. We all are certainly going through major life changing events on here.
    So there is hope that we can change personality when we have too.
    I wonder whether many things we put down to our personality do change when we realise that this change is a survival tactic as as much as anything. It pays dividends.
    There are tips and techniques to help us do this.

    I know every mood, attitude and stance I have is magnified in my husband's eyes. It is as if a slight impatience is construed as something far more. Where loving words gestures also have a positive response.
    The problem is that people with brain conditions pick up the subtle signs we give not just the obvious.
    So fake it till we make it perhaps.

    I am NOT suggesting this is a panecea for every issue or for every time, but if it works for as long as it works it is worth cultivating.
    It is not always easy, I have an infection at the moment so am really having to make more of an effort.
    My reward today was a banana beautifully mashed, better than a diamond ring.
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    991
    East of England
    This is very consoling because I do feel as if I am trying to survive in the face of intolerable circumstances. Tonight he was trying to remember what he had done today. He looked at his calendar and the white board on which I had written down the events. By the time he had put them down to write he had forgotten and still wanted to know. Instantaneous erasure, impossible to live with that handicap so no wonder I get upset with the stress of trying to help him live.
     
  16. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    65
    Buckinghamshire
    Ditto :(
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    1,706
    Perhaps I am fortunate as we have reached a stage just getting through each day is enough.
    So it is more about how we do things rather than what we do.
    Being fully present seems to be important, not as easy when tired.
    There is a little book by Thich Nhat Hahn, True Love. Amazon sells at £4.99. He is Buddhist but it is universal.
    He speaks of deep listening leading to understanding. It is a simple little book but helpful.

    I feel I have to keep developing skills to stop slipping down the slippery pole of this living with an illness that keeps making new demands.

    I find I really do have to let go of expectations, slow down, be content to do less.
    I do not expect the old empathy so the mashed banana was a real surprise.
    Now it is evening both of us are tired, a lot has been put off for tomorrow.
    A programme Great Guide to our coast, so off to Wales! Then Bed!
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    991
    East of England
    New attempt to be more understanding tonight with a couple of new strategies. They both worked and a much more settled evening, not completely but better.
     
  19. Mitch60

    Mitch60 Registered User

    Jun 13, 2018
    20
    I'm not sure if it will help but I was recommended a book Called " the little girl in the radiator" can't remember who the author was but it was about his mum and her dementia . I found it a help and easy to read .
     

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