Looking at it from the sufferer's perspective

Discussion in 'ARCHIVE FORUM: Support discussions' started by okmurrays, Oct 18, 2007.

  1. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    I am sure this has been dealt with elsewhere, so forgive me if I am going over old ground.

    As I am relatively new to Alzheimer's I am trying to get to grips with how it all feels from my dad's perspective. I can understand to some degree what my mum, his carer, is struggling with, but I am trying to understand my dad's perspective. Can anyone recommend any reading for me? I keep thinking he must be horribly afraid, but then again, his memory is such that he seems to blank much of it out?

    Any ideas gratefully received? Thank you.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006

    You might find some insight from the above link.

    There are so many different forms of dementia, and each form has different effects on different people. Some have more insight into their condition than others, some are affected by other conditions, which in turn affects their dementia, some show a slow decline, others a rapid decline.

    My husband has been fighting it since diagnosis 2 years ago. In turn he has been in denial, frightened, angry, `recovered`and very confused. During bad times he agonizes about what is happening to his brain, during good times he considers himself lucky he doesn`t have `real Alzheimers.

    His good and bad times change from hour to hour.
  3. janetruth

    janetruth Registered User

    Mar 20, 2007
    Hello okmurrays

    I only have my view on this and I think it all depends on the sufferer as a person, age, health and what kind of care they receive.

    We are all individuals and will respond in different ways to different situations, so we have to expect the unexpected.

    How can we even begin to imagine what it must be like to be THEM, in THEIR world.

    We can only do our best to love, comfort and reassure them even though we might, at the time, be feeling at the end of our tether.

    Take care
    Janetruth x
  4. Petrus

    Petrus Registered User

    Aug 7, 2007
    Helpful Book

    "The Simplicity of Dementia" by a Dutch psychiatrist and and psychologist, Huub Buijssen, whose father had AD is a short paperback available from Amazon. He sets out a simple theory of what is going on with the short and long term memories and how these can affect a variety of behaviours. He draws on his own experience and the literature to illustrate what can happen. He also provides practical thought processes and possible courses of action to deal with a wide variety of possible occurences. I find the book brilliant and very helpful. It is easy to understand but horrible to read (because of what it describes).
  5. Grommit

    Grommit Registered User

    Apr 26, 2006
    Jean is 5 years into AD.

    I cannot say that i have devloped a way of understanding how she feels. She has no language now.

    As I have lived with her for 40 years I can only try to understand her feelings by trying to project my own understanding onto her persona, using my memories of her to find a way.

    It does not always work. In fact, it sometimes goes disastrously wrong.

    As it seems to work more times than it goes wrong, I will keep trying to understand this new person who can no longer realise that she has two feet, the fork is in the left hand and the toilet is upstairs.
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    #6 Margarita, Oct 19, 2007
    Last edited: Oct 19, 2007
    I also have that book , found it one of the best read out of all the books I have on AZ.

    I did have a stage that I tried putting myself me my mother shoes in how she feel , but found it to emotional , deep sad . so had to step back look at it from outside the Box as I was reading about someone else .

    How my mother feels as from what she told me , is she feed up, tried of this life she says this when she can not co. - ordinate her balance .

    how I perceive that as when you get that feeling when your on a fun fair ride and get of and try to find your balance and then you do , but mum can't she living on that ride and still trying to find her balance to walk, but we all known that soon that ride does stop in her brain and she won't be able to walk any more
  7. Helena

    Helena Registered User

    May 24, 2006
    "she is fed up and tired of this life"

    This is certainly how my Mother felt with VD and she had not been ill for long

    Nearly a year after her death I am absolutely sure we all need to sit back and try to see how the patient feels .............i believe sadly that for whatever reasons we and often the medics fight too hard to prolong the misery they are suffering

    My Mothers last 5 weeks were absolute hell for all and so totally unessecary
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    #8 Margarita, Oct 19, 2007
    Last edited: Oct 19, 2007
    The only thing is when my mother made that statement is that she says that she does not want to go into care home , because she will die that what she told me . Even thought i know that not true

    so that telling me my mother dose not want to die, even thought we perceive it as misery suffering she wants to live she sure is Fed up of living with this brain disease , but my mother is fighting it , she got such a fighting sprit she not ready to die yet even thought for us it seem she suffering , my mother want to live on this earth , and I am glad that the medics, social worker fight too hard to prolong it . now when my mother brain shut down , that another story then she have no fight left in her, So her burden is gone and her sprit at rest with my father .
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    This is just how my husband is too. When he feels rotten, he is having a bad day, he wants to die.
    When his day isn`t so bad in his eyes he thinks he has a lot to be thankful for.
    It`s all relative.

    But we shouldn`t judge from our own perspetive and there`s no way we can get into the mind of someone with dementia, so we have to do the best we can to adjust to what each day brings, in the interests of the sufferer.
  10. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    Thanks for the suggestions of reading material etc. I know we can't get into the mind of those suffering, but I want to try and understand what my dad's going through and help as much as I can, albeit from a distance.
  11. CraigC

    CraigC Registered User

    Mar 21, 2003
    What a beautifully refreshing question :)

    I'm going to recommend a particular book that has some helpful snippets including a chapter "Seeing the world from the patients perspective" and another chapter "Live in the Patients World - Behavioural Changes"

    The book is called Learning to Speak Alzheimer's by Joanne Koeinig Coste ISBN:009188672-4

    I'd love to add some quotes but it is not fair on the author. I still refer to this book today as dad goes through the various stages/changes. Not the best book on dementia, but certainly stimulating and refreshing take on things.

    Again, thanks for a great question.

    Here is a link to the book on google:

    Kind Regards
  12. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    Many thanks for all the suggestions on reading materials.
    I had a long email conversation with my sister today, and we've elected that, for as long as possible, we'll give dad the best time we can in the 'now'. He won't remember what he did a day later, but at least we can give him as may great 'nows' as possible.
    My mum, aged 73, dad's main carer, is thinking about starting driving again after many years so she can potter around, and not worry about dad being at the wheel. In the last few months she's also mastered how to send emails, and is quite proficient with her lap top, having never typed in her life before! A great example of it's never too late!

    Thanks again. Waiting for my first book delivery on Alzheimers as recommended on this thread so I can get started.
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Have you considered encouraging your mother to register with TP. It will reduce her feeling of isolation and give her a lot of much needed support.
    Love xx
  14. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Hi okmurrays,i wish my mum would look at it from dads perspective,i know it's hard but the point you raise is a valid one.How must the sufferer be feeling?I have joined our local A/Z society and have persuaded mum to join me the next time we have a meeting.Grannies suggestion of your mum joining TP is a great idea.hope you get through this.love elainex
  15. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    Thank you for all your kind words and support.

    My mum is very defensive and protective of my dad. For quite a while she wouldn't tell anyone outside of the close family what was wrong with him. She felt she was betraying him somehow and she should be able to cope on her own. I live in Canada, thousands of miles away so most of the day to day watching of my mum is left to my sister, brother in law, and aunt. I've mentioned TP and the Alzheimer's Society to my mum. But I have to be careful as she doesn't feel comfortable talking about dad's problems (let alone her own). I think I'll leave it a while then mention it again. I told her to at least look at the factsheets.

    She's doing remarkably well, from a practical perspective, and has taken over all the financial stuff, organising little breaks for them, mastered her laptop, considering taking up driving again etc in her 70's. I am SO proud of her!
  16. Les

    Les Registered User

    Jun 23, 2004
    Hi okmurrays - i'm in a similar situation to you - I live far away (not quite as far as canada, but a flight away nonetheless) and worry so much about my Mum looking after my dad.

    Like yours, my Mum has been incredibly strong and we are all so proud of her. And like yours, my Mum resisted for so long telling people about my Dad, because she wanted to retain some 'normalcy' in their lives. She felt it wasn't right to share the indignities of Dad's illness with people, that it was somehow wrong for people to know what they were dealing with. That it might scare people off. I respected that decision. She also refused to go to a support group or to talk online to people who might be going through similar. Partly because she hates the idea of 'sitting round in a circle all sharing your problems'. (I did explain it didn't have to be like that) but mostly because she felt like her life was being taken over by Alzheimers and she wanted to have SOME time to herself. Of course what this meant is that her only support group was her family. And that gets hard for us all. But its what she needed at the time.

    Of course, as time goes by, these decisions have to be reviewed. She now does have to tell everyone what is going on, because she needs the support - and because it's so obvious that dad is so ill. And she now talks to people at carer's meetings. She has even spoken at conferences on the subject. She's incredibly strong, even in the hardest moments. I tell her that I'm reading and using this forum and she is interested in the responses I get. The support net widens.

    Your mum will get comfort from knowing how much you care and how much you want to help. And I bet she's proud of you too!

  17. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    Thanks, I'll continue to mention the forum here and the help available, anonymously. We'll see how she goes. My sister emailed today to say that my mum's laptop has a virus but my nephew's going to sort it out for her, so she'll be up and running again in a day or two. I'll call her tomorrow to check how things are. My sister seems to think dad's had a 'good' couple of days because mum's managed to occupy him in the garden preparing it for winter. He's always loved gardening.

    Thanks again.


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