1. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,989
    Male
    Bristol
    That all sounds pretty hard going Jknight. Sorry your thread asking for advice on the scratching didn't help you, I'm stuck myself on answers to that one.
    I was a bit more optimistic than Kevin when I noticed the links to the Alzheimer's Society on the BBC report, but when you are up to your eyes in Dementia and all it's indignities it's hard to stay positive for long.
     
  2. myss

    myss Registered User

    Jan 14, 2018
    373
    #22 myss, May 12, 2018
    Last edited: May 12, 2018
    I'm glad someone starting this thread, I looked for it on Thursday and was going to start it today! I am pleased for Scott for raising the subject and his reasons for doing so, he's not the first and sadly I doubt he'll be the last.
    I just hope he is given direction for support, even being told about this website for those times when there is a need to be in the company of those who know what he is going through or just for chat. All the best to him and his wife.

    I agree with you there. Some people may seem to have all the money but are still unhappy, the unfortunate death of Dale Winton seems to be an example of that.
    Having a supportive and trustworthy family around is more valuable than money. I'd need my two hands to count the number of people who will do what maybe the not so nicest tasks for my dad without having to be paid to do so, with Barbara that may be just her husband. Who knows.

    I saw that feature on BBC Breakfast and I agree it seemed to focus on the positive side more so even though there was a carer there too. That woman was Wendi Mitchell who has written a book about her dementia experience.
    In hindsight I think you have a point. There could have been a bit more information on what types of behaviour are common with those suffering this awful disease without scaring viewers as there was a wealth of information on being able to still live a life. It would have been useful for people like my mother who initially tended to think dementia symptoms were just about being confused and slowly losing your memory, so not being fully aware of the behaviour my dad may display.
     
  3. 70smand

    70smand Registered User

    Dec 4, 2011
    265
    Female
    Essex
    After hearing about a Barbara Windsor’s diagnosis on the radio I felt sad for another person and their family having to go through this horrible disease. The same day I heard several phone ins on the radio with people of all experiences talking, some positive, some negative, and I thought if the only thing that comes out of this is more awareness and more people talking about all aspects of dementia then surely that can only be a good thing. After all, everyone’s experience is exactly that, their own experience and I sort of feel it would be wrong to tell someone just how awful everything might possibly be when they are just entering into this. It’s all sad and some of us get through by taking small pleasures out of the little things where we can.
     
  4. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,693
    My heart aches everytime I hear of anyone being diagnosed with dementia, doesn't matter if its a celeb, or one of my friends parents. You know that whoever it is, they and their family are in for an horrifc and heartbreaking ride. I truely wouldn't wish this illness on my worst enemy.

    As regards Scott speaking out - I'm glad he has, because hopefully, if nothing else, it may result in more donations to fund research. But in terms of it 'raising awareness', unless he has the bottle to continue to speak out and to do so honestly, without glossing over what he is facing now and will face in the future, then it will make no difference to the general populations understanding of this illness. I've read dozens of books written by people who's lives have been touched by dementia, including books by celebs' families - 'My Bonnie', and 'Where memories go', written by John Suchet about his wife, and by Sally Magnusson about her Mum, for example - sad reads, but only John Suchets' book even came slightly close to touching on the reality, on the nitty gritty issues that, if only were spoken openly about, would bring a level of understanding that is completely lacking at the moment. Books and accounts written by 'ordinary people' who have supported a loved one through this illness tend to be more honest - but they also tend not to be well promoted or well known.

    I understand that there is concern about 'frightening' people, especially newly diagnosed pwd's and their families. But, sugar coating the illness is so totally ineffective that a change in approach is desperately needed. You only have to read on here the comments from the number of carer's who are really (and rightly) offended by the 'living well with dementia' slogan, which totally mis-represents the reality for so many of us, to know that the current approach isn't helping. How many posts do we see on TP from people who have just recently stumbled across it, asking for advice because 'My mum thinks there are two of us', or because their husband or wife has started to have periods of severe agitation and they don't know why (they have never heard of sundowning) or because they had no idea that they would have to cope with incontinence or paranoia, or because they don't understand how it is that their loved one can suddenly behave almost normally when it (seems) to suit them ? All these are fairly common issues that carers face - but also issues that most know nothing about untill they actually start happening. I know that when Mil was diagnosed, at no point did anyone ever tell us about the possibility of having to deal with any of these issues. And that seems to be the case for a lot of people that I read posts from on TP. How can that be right? Lack of knowledge (especially before finding TP) led to me making the wrong decisions or responding in the wrong way to situations I faced. So not having the truth readily available led to life being harder both for my poor Mil - and me.

    Cancer is a foul, horrible and terrifying illness to deal with too. But that hasn't meant that the general population are unaware of the effects of the illness, of the effects of treatment like chemotherapy, or of the impact that caring for someone with cancer has on families. We all know, even if we haven't had to deal with cancer 'close up and personal', a good bit about all the issues surrounding it's impact and what suffering with cancer can entail. We all know about the hair loss and the sickness and hospice care and the isolation. And I honestly believe its because the facts surrounding cancer are not sugar coated to the huge extent that the facts surrounding dementia are, that because the general public have access to masses of information about the illness, that we have a situation where resources to research cancer and provide support for those affected by it, are so much better than the resources and funding available for dementia. If the truth was readily available, if the general public really understood the impact, then the pressure on those that hold the purse strings for research, treatment and support would increase - and maybe then we could start to see the progress in dementia care and treatment, that we (thankfully) see with cancer.


    Oh - I wish you would! I wish that not only would you write it, but that somehow, someone who has the means, would ensure that it was well publicised and promoted. It will scare people - but I believe that ignorance, when you are faced with this illness, can be and often is, far scarier.
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,246
    If they reported the reality, would that mean that people with dementia would be even more shunned and feared? On the other hand, would it start a proper realisation that carers need proper help? what do you think?
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,246
    Thank you for that! Let's see what can be done.
     
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,981
    Suffolk
    #27 Spamar, May 13, 2018
    Last edited: May 13, 2018
    So when I opened the iPad this morning, there was an advert for AS, with picture of Scott and Barbara. Did she give permission for it, I wonder.
     
  8. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    I’ll second that.
    Unless you are in it as PWD or carer, people really do not understand the torture of the illness to the PWD, the emotions, exhaustion, the battle for support and the rest.
    As a carer my life has been turned upside down.
     
  9. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #29 lemonjuice, May 13, 2018
    Last edited: May 13, 2018
    This is interesting. Having just read of the death of Tessa Jowell after her fight with cancer and that last speech in Jan in the House of Lords where she received that standing ovation she talked about 'having a good life living with the disease'. That was only a few months ago and she was 'living' a reasonable life with her disease.

    For me that is the devastating point about dementia.
    Yes in the 'early / mild stages' it can be possible to 'live a good life with the disease, but all too soon, for the sufferer and all the family they cannot 'live a good life' with the disease, but just 'go through the motions of living' each and every day. Even in the middle stages of her disease my mother used to bang her head against the wall and say, "This isn't living , it's mere existence!" She wrote similar things down when she was still able to write and I found that difficult when I found them clearing out her things. That was many, many years before her death and 'release' from 'mere existence going through the motions'.

    Certainly I think, and have been saying for years, that the public need to wake up to the 'ticking time-bomb' of problems with us all living longer and inevitably developing bigger problems than we ever saw in our childhood with our elderly relatives. so we have little experience and have to find our way through, often poorly.

    I would love society to acknowledge that dementia is a real illness and not 'just a little memory problem' :rolleyes:, and there to be more support for carers. However I also think that if the general public were to realize the full extent of the problems with the disease, either people would feel frightened by the enormity of the task and responsibility of care, or else there could be even more stigma and sufferers and their carers might become and feel even more isolated,:(
     
  10. 70smand

    70smand Registered User

    Dec 4, 2011
    265
    Female
    Essex
     
  11. 70smand

    70smand Registered User

    Dec 4, 2011
    265
    Female
    Essex
    Oops, I was about to say ‘so true Lemonjuice’, especially to the last part of your comments. I remember my mum saying as a carer to my dad that she felt she was just existing and not living, and no matter what I tried to do to support her it was never enough.
    There is definitely such a lot of support on here though and I have certainly gained some strength, support and insight from here, and if nothing else, I know I am not alone.
     
  12. captainscarlet

    captainscarlet Registered User

    Feb 4, 2016
    23
    coventry
     
  13. captainscarlet

    captainscarlet Registered User

    Feb 4, 2016
    23
    coventry
     
  14. captainscarlet

    captainscarlet Registered User

    Feb 4, 2016
    23
    coventry
    Well said christina, i get very frustrated with the lack of realism in the portrayal of long term dementia etc. Yes certain new technology does make things a little easier, but the lack of access or just not interested in the internet proves a huge barrier to a older generation in getting endless information , products for their condition. or even the best choice when deciding care assistance.
     
  15. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,156
    Nottinghamshire
    I'm not sure that people with dementia would be shunned anymore than they already are when they reach the later stages. My sister and brother won't take dad out anymore because they're afraid he'll wet himself. Yes he will, but if he's wearing his pull-ups no one will know.

    If you wrote an article stating what can happen in the worst cases, but also making it clear that this doesn't happen to everyone with dementia, I think it would be very helpful. Written sympathetically I believe it could lead to more understanding and inclusion of PWD in mainstream society. You could also direct people to TP - I would not be coping at all without it.

    Although the thought of what might happen scares me, a lot of it has happened now and it's very hard to deal with , but thanks to forewarning and TP I'm still coping - just!
     
  16. kindred

    kindred Registered User

    Apr 8, 2018
    2,246
    This is my fear, I mean, I would really tell it how it is, how it broke me and thousands of others ... but I am afraid of the backlash as it were. Where I lilve you NEVER see anyone with Dementia because they are all behind closed doors ... Thank you.
     
  17. kindred

    kindred Registered User

    Apr 8, 2018
    2,246
    Yes, of course, I would attempt to be balanced in my overviews and absolutely clear as to what happened in my personal bits. No paper would publish it otherwise. I so agree. Thank you.
     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    2,246
    And oh yes about that business of living well with dementia. At first I found it hopeful, then I found it another cross I had to bear as we certainly were't living well with it ...One of the social workers tried to guilt trip me by talking about deprivation of liberty with regards to OH, and I thought, what about deprivation of my liberty!!!
     
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,352
    Female
    South of the Border

    Yes, yes YES!!

    I agree.

    Barbara Windsor is probably at around the same stage of the illness that my OH is. One can say there are positive sides to it - keep cheerful and all that.....BUT the harsh reality is that this is only a phase of an illness that is so dire, so awful, so relentless, demeaning, and without respect of who you are or what you were.

    I defy any film maker to put their cameras into the end game of this illness. I have seen it in 3 people I have known well, or am related to, the end game- it's there, it is the nightmare ahead.

    And that is why they will not film it, not publicise it and will encourage everyone to go to singing, make memory books and occupy their hands with fiddlers like babies have.....

    It is terrifying, make no mistake. But for those still at the stage we are at, it is a terror we don't want to look in the face.
     
  20. smartieplum

    smartieplum Registered User

    Jul 29, 2014
    259
    This. Living positively with dementia. What a crock. It's heart breaking. A slow death that can be drawn out for years and years. Life consuming heartbreak.
     

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