1. 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.
     
  2. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    881
    Middle England
    No one has mentioned the David Baddiel Channel 4 documentary about his dad, Colin who has Picks Disease. Without wanting to stir up the widely different responses to the show when it was discussed on this forum, it did nevertheless show some of the realities of living alongside a person with dementia with very little "rose tinted glasses" in use, Has it made a difference to the wider understanding of living with dementia? No, in my opinion.
     
  3. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    173
    Male
    South Northwest
    There were definitely no rose tinted specs there, and I certainly recognised much more of our life in that one than in most of the TV-friendly, public facing dementia coverage. Living well is definitely possible at times, but it's like shafts of sunlight through the clouds; you enjoy them while they last, always hoping for a sunny day, always carrying an umbrella.

    And a large packet of sterile wet wipes this morning... that'll teach me to slump asleep again instead of getting up when I hear any movement! But then that takes me back to the carer's constant companion... guilt. Maybe It's All Our Fault, and the folk who say that appropriate care can solve all issues are right?

    Maybe they are. But, like lots of others, I'm just going to plod on doing the best I can, when I can, and hope I'm improving Mum's quality of life rather than dragging her down.

    Anyway, Barbara Windsor... it's a shame to see anyone fading away, and the brighter they shone, the harder it can be to see. She certainly made an impression on me in my youth, and it's nice to hear that she's still got her trademark laugh. Laughter is always a delight, if and when you can find it.
     
  4. kindred

    kindred Registered User

    Apr 8, 2018
    2,194
    Thank you, I so honour your opinion on this. Thank you.
     
  5. myss

    myss Registered User

    Jan 14, 2018
    360
    Good point. That programme was in the back of my mind when I posted on this thread yesterday. I felt that programme was presented well, I felt it showed the good and the bad sides of which were not frightening and I could identify with my own experiences with my dad.
    Contrast this to the piece I saw on BBC Breakfast, if I did not have the experience and knowledge of dementia that I have now, I would have come away from that interview thinking all Alzheimers' was just about is getting confused due to a diminishing memory.

    I agree it's not necessary to spill the whole ordeal of the illness at the point of diagnosis, but a more fuller picture can be given without being frightening, i.e.stating some of other symptoms common to pwd's but state that are not necessarily suffered by all pwd's - as was seemingly shown by Wendi Mitchell and the carer that was present - so that when it happens it won't be that much of a shock to those around them. This was reason why Scott came forward with his story - so that others won't be that shocked if his wife acts 'oddly' in front of them or in public.
     
  6. Azay28

    Azay28 Registered User

    Nov 21, 2015
    95

    I agree with what you say here, Beardy D, about the "live well with dementia" saying. The emotional side of me really struggles with this concept regarding my PWD (Mum), I feel so much guilt that I need to do more to enable her to "live well" and then my logical side kicks in and I think hang on a minute my Mum is 87 years old ,3 years since diagnosis and gradually doing less and less while suffering with the exhaustion of it all. How can she possibly "live well" as they suggest. And also not consider it a death sentence as everything will gradually shut down.
    Although I also was sorry to hear about Barbara Windsor. Yet another poor soul diagnosed with this awful disease.
     
  7. father ted

    father ted Registered User

    Aug 16, 2010
    688
    London
    It is all relative.

    My Mum, after her diagnosis did 'live well with dementia' for a few years but she lived well in the way that anyone of 83 would. What is hard is when it is someone young, still with young children or children at school, with a mortgage and family still financially reliant on them when by rights they should have years left to live their life fully.
    I don't suppose it's any easier to live well with terminal cancer or MND, perhaps a lot harder. As pertinent is how well those caring for the person can live and like lots of things it can come down to how much support you have and your own mental attitude. My own has deserted me of late but experience has taught me that given time it will return- it has too.
     
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,295
    SW London
    Ditto to all that.
     
  9. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,624
    Female
    I think part of the issue with the way (e.g.) the BBC presented the issue, is the usual inability of the media to deal coherently with medical issues in general, my OH is a medic and often critical of this. But it is also due to the desire of relatives involved to protect the PWD's privacy. That is much more heightened when it involves a public figure. Scott will want Barbara to be remembered by the public for her career and bubbly personality, not for her end-stage dementia issues. So while I am sure he wouldn't want to sugar coat it (and so far he hasn't as far as I can see) I suspect we will only hear about her further decline in general terms. And actually I think that's right although I know some won't agree.
     
  10. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,295
    SW London
    #50 Witzend, May 13, 2018
    Last edited: May 13, 2018
    Demise?? She's still alive
    I agree 100% - all this 'living well...' has always seemed like a sick joke to me, at least past the very early stages.
    The problem with the media, I think, is that they tend to assume that people don't want to know the depressing stuff, so they give them what they think they want to hear - ' nothing to be frightened of, quite jolly really.'
    Sadly, most people have to find out the hard way what the reality so often entails.

    I certainly don't think it'd be right to film actual PWDs who'd be unable to give informed consent. I was very protective of my mother's privacy in mid and later stages - preventing albeit well-meant visits from people who I knew her former self would have hated to see her like that. She had always been a very private type anyway.
    But actors could surely be used. So many people who've never had to deal with it just don't have a clue - though to be fair, neither did we before it hit us.
    I've actually known people to say e.g., 'But at least people with dementia are happy - they must be, if they don't know what's wrong with them.'
    Maybe some are, but it's certainly not the case for so many.
    I am still haunted by the poor lady at my mother's CH who was crying and so distressed for hours while their Christmas party was going on downstairs - no, she wouldn't go, she had to get home to her mother who didn't know where she was and would be so worried. Nothing the very kind care staff said or did could comfort her. I was a witness to it all - sitting upstairs with my mother who was too late stage for the party - it was truly heartbreaking.
     
  11. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,896
    Male
    Bristol
    @Witzend, you are right. I should read these things properly. :oops:
     
  12. Jancis

    Jancis Registered User

    Jun 30, 2010
    2,567
    Hampshire
    The feature on BBC Breakfast TV with Wendy Mitchell was interesting. I follow her blog and she says she has recently been 'media trained' so she can speak about her experience with dementia (on TV, radio etc). I must admit it made me wonder about how realistically dementia is being portrayed.
     
  13. BeardyD

    BeardyD Registered User

    Jan 19, 2016
    89
    I'm a little late replying but I hope you go ahead and tell the whole truth.

    When dementia first came to stay I went on a carers course run by our Memory Clinic. It was very positive and any talk of even the mid stages was quietly suppressed. Fortunately there was a volunteer helper whose husband had recently died with dementia who would discuss matters openly despite the looks from the other presenters. The only person who got upset was a woman well into her 80's whose husband had just been diagnosed with dementia. She started crying and left the room. She returned a few minutes later and said that she wasn't upset by what was being said but from relief because no-one had talked to her openly about dementia before.

    As far as TV programmes go, the first to impress me was Grayson Perry's "Who Are You?" http://www.channel4.com/programmes/grayson-perry-who-are-you/on-demand/55337-002 at 26:40 to 40:40 and a bit more at 43:53 (you'll need to create an account and watch some adverts). It's all very polite and doesn't include incontinence, sleepless nights etc but it nicely sums up the emotions of losing someone to dementia.
     
  14. Malalie

    Malalie Registered User

    Sep 1, 2016
    306
    Female
    Hair Twiddler

    "No one has mentioned the David Baddiel Channel 4 documentary about his dad, Colin who has Picks Disease. Without wanting to stir up the widely different responses to the show when it was discussed on this forum, it did nevertheless show some of the realities of living alongside a person with dementia with very little "rose tinted glasses" in use, Has it made a difference to the wider understanding of living with dementia? No, in my opinion."

    It did inform me about Pick's disease - be it that I only wanted to watch it to be more informed about dementia (Made me almost glad that MIL only had Alzheimer's /Vascular TBH!) I found it very interesting, and I can't quite decide whether it was brave on David Baddiel's part, or exploitive - I believe he did some stand up shows about it too.

    Although showing that Dads mental state was so difficult to deal with, it didn't show that the fact that David and his brother could visit and talk and film and walk away and go home, leaving Dad with his carers. That would cost about £1200 per week here in the sticks - goodness knows down south.
     
  15. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    173
    Male
    South Northwest
    Thanks for taking the time to go into such detail, and thanks also for forcing me to take Perry seriously for a change; I've always found him and his art uncomfortable in a way which says far more about my blinkered shortcomings than his talent.

    Although this is another case where someone is fairly self aware and dealing with dementia as well (on the surface anyway) as can be hoped, there was definitely a lot more looming cloud than silver lining here. The plight of the carer was more evident in that poor woman's eyes than in her words, and I found myself shedding a tear or two when Perry was working on their pot.

    I'm not sure why. Maybe it was his sensitivity and the concrete portrayal of decline. Maybe it's just been a long day. Or maybe I have a fleck of dust in my eye from Mum's rotten conservatory that I'm trying to rescue... I seem to be drawn to one lost cause after another these days.

    I really ought to have been drawn to bed a long time ago though! But the lure of the quiet hours when we can be ourselves, albeit a weary version of ourselves, is often strong.
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,377
    East of England
    The words of Tessa Jowell about brain tumour research, support and carers apply to PWD too. Sooner or later more funds will have to be diverted into Alzheimer’s research which is fast becoming the most prevalent disease of our time. I am not sure of the statistics. Now it is acceptable to talk openly about cancer which was taboo a few decades ago. The time is ripe for more openness about dementia and Scott has made a start. I just hope that someone in government will take notice.
     
  17. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    #57 Loopiloo, May 14, 2018
    Last edited: May 14, 2018
    My husband who died almost 2 years ago had vascular dementia 15 -16 years. Mild memory problems and personality changes having started following a stroke a few years earlier shortly after his 62nd birthday. A good natured man, after his stroke at times would be easily irritated, then bad tempered and eventually more often angry than not. Then he became extremely verbally aggressive. We managed alone at home for about 10 years then he fractured a hip, in hospitals 6 months then not allowed home and spent his last 5 years in a care home.

    I have a group of friends of many years who knew us both well, all now living a distance away but we are in close touch. None of whom have any personal knowledge of dementia and this is their attitude - dementia can't be so bad because they don't know they have it. Two seem convinced those with dementias are happy (as Iris Murdoch portrayed by Judi Dench was happily dancing at the end of the film of that title.)

    They have asked about my husband, asked about dementia, I have tried to tell them - to answer questions honestly without ramming it down their throats. They have read articles - sometimes sent them to me.

    But they are no nearer any understanding and the attitude is as quoted above. They have read about Wendy Mitchell, heard her on the radio and on TV, and they seem to be convinced she is typical.

    It makes me feel they think I have exaggerated when I have touched upon the realities. Perhaps it is what they want to believe. I now say less and less and having received a recent email from one friend talking absolute nonsense, I have decided to ignore any further discussions on the subject.

    I think fear causes people to want to believe that " people with dementia can live well". Yes in the early years we did have times when this was possible, and I tried to make life as good as it could be for as long as possible. Not easy. But "living well" throughout the course of the disease is not possible as we know.

    Another thing difficult for others to understand is that there is no set pattern of dementia progression. How can one 'explain' such a range of different symptoms which can develop and that not everyone will have this or that one etc., etc. How to explain that there are different types of dementia, Alzheimer's and vascular being the most common but that there are other types... and so on...

    Some of these friends do fear developing dementia, we are all in the older age group and they seem to believe dementia is solely the result of ageing. I have told them about early onslaught dementia but.....

    Fear is the barrier and weren't we all fearful (to put it mildly) when we first suspected and then knew the person we loved was in the early stages of dementia.

    People may be aware of dementia, but do they want to know about it? Perhaps that is only possible when they become in some way involved with dementia through a loved one, or a friend. I really do not know the answer....

    Loo
     
  18. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    173
    Male
    South Northwest
    I think most of us can accept, to an extent at least, the body 'going wrong' in the majority of diseases and illness. We might lose the fight with the sick body, but as long as the mind is with us until near the end, there remains some illusion of transition, of life being here one moment, then gone... perhaps somewhere Else. We get to say goodbye... perhaps au revoir.

    But dementia reveals us, with unique, glacial cruelty, to be mere sacks of flesh and bone. As a lifetime's pool of experience and memories dry up, the person we knew dries up too, shriveling before us while we try to keep the emptying museum of their flesh safe. Is there any wonder visitors dry up too?

    Sometimes I think they're the sane ones. Those of us patrolling the empty museum halls can shine a torch into the darkness and populate it with our own memories of what used to be there. But are we doing it for our own benefit rather than the person with dementia?

    Mmm... the trouble with being a carer is you get too much time to think. Mum's sitting snoozing opposite me. Behind her, her once beloved garden grows almost as I watch, while she slumps lower in her chair. But earlier she sat out for a while and admired 'the blue flowers'.

    She always loved bluebells. She still does; they don't need a name to be beautiful. And I don't need a name to help her. I can be whoever she needs... even if sometimes all she needs is someone to blame.

    Anyway, I don't blame the media for the Vaseline smeared on the dementia lens, I blame being human. In order to enjoy life we probably have to forget death; especially the longest goodbye of all.
     

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  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,194
    That is so interesting and what a long ordeal you have had my dear. Like you, I tried to make life as good as could be for as long as possible. But it was not living well. Fear certainly is the barrier. It is easier to put it down as a lifestyle illness. Both my OH's mother and mine had MS, both severely, and in those days it was put down to having a nervous personality ... but my mum was a champion cyclist and one heck of a woman. I think it is all part of the it can't happen to us barrier that most of us have to believe in. What would be the message you would like to put across? I'm asking because I'm still not sure.
     
  20. Jancis

    Jancis Registered User

    Jun 30, 2010
    2,567
    Hampshire
    I don't blame the media. They receive 'images' created via the 'vaseline smeared dementia lens' from Press Offices (PR agencies) etc.

    But I agree with you fundamentally Andrew. Your account of watching your mother and her blue flowers today has moved me.
     
  21. SunnyDelight

    SunnyDelight New member

    Feb 9, 2018
    7
    "...my guess that this will only show the good bits and she'll be shown as getting a bit dotty and should she become aggressive, violent, verbally abusive or incontinent none of that will ever make the papers and AZ will again be shown as just a bit of forgetfulness and not the reality so many have to live with."

    I'm late on this. But glad to see we weren't the only ones to dismiss the "Barbara Windsor is doing fine line" as absolute nonsense (well, I actually used a stronger word at the time).
    So fine that they didn't want her to attend her friend Dale Winton's funeral just weeks later. Why? Would she laugh continually and uncontrollably throughout? Scream like a wild animal? Hit people? Defecate in the church aisle? Or a whole host of other things that are slightly more worrying than 'mislaying your keys occasionally (aawww bless)'.

    To echo what some have said here Alz/Dementia is ALWAYS sanitised in the media so I continue to get the bemused and confused reactions when I tell people, sorry I can't go away for that weekend or even leave the house on a certain day/night etc.
    But of course everyone wants their privacy and it's 'the government's dirty secret' so it's unlikely to be getting any real attention any time soon. We'll continue to get the stories about the son and father recording a CD together - but he occasionally forgets the words (titter titter, awww bless) type of trash and not the real truth of how this always pans out.

    Some time ago I did see a video a guy had posted on Youtube of his dad wandering about looking deathly and lost (with the exact same sunken look and lost eyes I've seen on my mother on occasion). From memory most of the comments were about how he shouldn't have put a video of his dad in that state there - as there's a privacy issue and of course as everyone that's never seen mid-late staged of dementia - it's just forgetting where you put your TV remote occasionally and then having a good chuckle isn't it?

    Whatever happened to former PM Camoron's 'dementia awareness'? (I just looked it up and it's already been 6 years since then). Yet people still haven't got a clue (including the vast majority of people working in the NHS).
     

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