Feedback on living well with dementia

Slide1The feedback from the Insight program from many people was overall very positive, but some “were deflated by it, saying it totally bypassed the realities of people with moderate-advanced dementia”, and one family support person said it “showed dementia through rose-tinted glasses”I’m adding a few snippets of feedback here, without people’s names for their privacy.
 
I would like to say in response to the two comments above, that most programs about dementia, completely bypass the reality that many of us are (and can) living much better with dementia, than the public perception, which is almost always ‘late to end stage’ in the media.

 

Unless diagnosed very late in the disease process, none of us go to end stage upon diagnosis.
 
It must have been difficult for the team at SBS Insight to turn 2.5 hours of filming into a 50 minute program, but I feel it was reasonably well-balanced. I only agreed to be involved because they were aiming to show there is another side to dementia, and as I said, it is not all, or immediately, “taking off our clothes inappropriately in public (in my BUB’s dreams!!) or dribbling down our shirt!”

 

However, “Some ‘carers’ felt even more guilty and inadequate after watching it, others even more sad that the person they’re supporting is nothing like me, Ray or Elmer. There’s a real risk of many people dis-identifying and rejecting positive programs… the same thing happened to Christine Bryden’s Australian Story. Is it time to publicly debate the “use” of early/timely diagnosis and peri/post-diagnostic interventions and support (if any)?”
 
Yes, I agree and feel truly sorry for the program causing some to feel inadequate and more guilty, but sadly, the Prescribed Disengagement dished out to us all, and the constant negative discourse has set everyone’s expectations so low, and engendered such hopelessness, it is going to take generations to make progress… it is time, I believe, that we show all sides of dementia, and not only the tragedy of it.
 
And, I have been trying to publicly debate the peri and post diagnostic support, or lack thereof, for years, but most of the people in power making decisions about our care, are not yet listening. A woman I would call a friend and colleague, working in the dementia sector, Denise Craig, is a wonderful exception to that and is striving hard to make meaningful and positive changes.
 
Feeling inadequate and guilty is something we all feel. Yes, even the people diagnosed with dementia. My guilt never ever goes away, and is heightened every time I need to ask for help. Every single time.
Sadly, one friend of mine with dementia who has outlived her prognosis and is also living well, has been told by a family carer they: “wish she would hurry up and die as it makes others feel guilty.” How despicable is that?!
 

When you do well with cancer, people usually feel thrilled for you, but it seems, that is not yet the case with dementia.

But I digress, so back to the issue of showing a more positive side of dementia. We all know that some people wallow or are pessimistic facing an illness or a crisis, some get on with living, and others sit on the fence… maybe I’m lucky to be born optimistic, but bloody hell, I do work hard at it.

 
I cannot change the experience of others, and sooner or later, they also have to accept their experience is not everyone’s either, and yes, it is truly devastating to have dementia, and to see loved ones die from it. My BUB and I know that first hand, having supported three people with dementia who have died, having been legal guardian for two of them, including his father. It was not all champagne and roses, but even towards the end, it was not ALL bad. For my BUB and I, it is not all champagne and roses either, but 
I often say;


 
Being diagnosed with dementia is nowhere as mush fun as a birthday party, but it is no reason to give up and die straight away.

Ps. We might as well live until we die.

PS. I cannot get the spaces to stay between the paragraphs (again!!!!)… apologies.

49 thoughts on “Feedback on living well with dementia

  1. I am 65 and was diagnosed a few years ago. Great Grandmother, Grandmother, Mother, Aunt…..all died with this terrible disease. After watching them go through this, I decided that I was going to react to this disease differently. Unfortunately for my Mom, my Dad, while basically a good man, became a “pain in the butt” if he could not controll the situation. He was not a kind/good caregiver and I was not all that sad when he put her in a nursing home. It was probably a happier place for her. I do not live like I have this. I realize that I am still in the early stages, but I live my life like I have always done. I still pay my own bills, plan, shop and prepare all meals, take care of the house. You get the picture. I try very hard to stay upbeat and positive, but it is hard some days. My Husband is wonderful. He is kind and at this point doesn’t really have to do much for me. If he sees me struggling, he will ask if I need help and if I say no, he will back off. My point here is that it doesn’t have to be the end of the world after being diagnosed. A little challenging, but life can be that way no matter what your issues. I really liked the post from Kate Swaffer comparing living well with Alzheimer’s to other terminal diseases. Everyone rallies around you if you get cancer, but if it is Alzheimer’s, people disappear. I think they are uncomfortable around us. The way I am now, most people don’t even know or are just starting to wonder. I only tell people when I think it is time they know (usually because I am around them a lot). Anyway, my point is you definitely don’t and shouldn’t give up as soon as you get a diagnosis. You will be wasting some really quality time in you life. Thanks for listening and hope it might help,

    • Hi Pat, thanks so much for joining the conversation here, and although it is not great you have been diagnosed with Alzheimer’s disease, it is fabulous to read you are living as well as you possibly can with it, whilst you can. Your comment; “Unfortunately for my Mom, my Dad, while basically a good man, became a “pain in the butt” if he could not control the situation” really resonates with me, as the people who seem to object the most to the positive messages about dementia, are often family carers who see us somehow as a threat to them or undermining their love and care, and their own experience. Talking publicly about it being different is simply giving a voice to another experience, but seems to mean to them they are losing some of their control… of course, that may be a very generalise assumption, but the bullying that has been directed at me recently, is all from past or current family carers. Living well with dementia, is a new concept, even though it is the Global Charter of Alzheimer’s Disease International (http://www.alz.co.uk/global-dementia-charter), and has been for some time.

  2. Kate, I was just reading your blog and it brought me to tears. I work with Alzheimers patients but have been touched personally with a family member who had Alzheimers. My family and I are angry about some care decisions with our loved one and we are trying to channel that anger in a direction that will help others. I will be following your blog faithfully!

    • Thanks Kelly, and I’m sorry to hear you have a family member with dementia now. It is quite different when it is personal, to when you work in the sector, for sure. There are some great people out there trying to to good things, but sadly, that is not the norm (yet), and many of us, like you have had to, experience some very poor care. You/we have very right it be angry, also the reason I continue to speak out, even though I get slapped down quite a lot!! Huge hugs to you, and keep up your campaign. xox

      • We’ve literally had the fight of our life as a family. Any suggestions on what direction to go to make changes are welcome!! We know what went wrong in our personal story, but I know there are others who have other ideas. We are really hoping to use our experience as a family to make huge changes, and help with awareness!!
        Sadly, my Step-Mother-In-Law passed away in August of last year, but she had so many many many of her rights taken away and we dont want that to happen to anyone else!!

      • I’m sorry you have also had such a hard time, and if I had the answers, I’d have shared them by now. Sadly, there is a huge groundswell against people like us who express the need for change! take care

  3. Hi Kate I thought the SBS programme was very good. It is hard to cover all you want to in an hour and it is hard to put everyone’s point of view and circumstance across. We all know that every medical case is different, everybody is different and everyone reacts, responds and copes differently. It was not all about the physiology of the condition from a medical point of view but was trying to put across the importance of early diagnoses, support and a plan for the future. This is one of many conditions that people may have to deal with in their lives whether it is themselves, a loved one or in a professional caring capacity. I thought it got the topic out there, gave people a bit more of an understanding of what people diagnosed with dementia may have to deal with and also an insight in to ways in which they can be more understanding and helpful to those in need. I have also done the MOOC course in Understanding Dementia through the university of Tasmania which I found to be fantastic. Keep up the good work of keeping this in the public domain. All the best. Deborah Jones

  4. I love your blog, Kate. I haven’t figured out how to post comments on it, but at least there’s email.

    Jenny Brocky and Co did a great job, along with the panel members and audience.

    While I have no one I’m immediately connected to who has dementia, nor do I, I want you to know I’m on your side. Enough negative conversation about dementia. It’s time to be on-side and to foster dignity and respect with this special population. One that many of us will likely one day join.

    Keep up your great contributions in the area of advocacy.

    Kind regards Eve Grzybowski

    Sent from my iPhone

    >

  5. I think these people express a really valid point – and yes the same thing happens to people with cancer – positivity is great but it does make some people feel like failures when, inevitably, their disease progresses. We can all live well with whatever disease/illness/setback/whatever that we have but eventually we should be allowed to progress to acceptance and peace. I have wanted to make this point for some time but I have felt constrained. I hope you will forgive me.

    • Hi Sally, please don’t feel constrained, unless you want to. Absolutely nothing to forgive xx
      Whether we agree or not, is irrelevant, as having differing opinions is healthy. Living well (or better than the general perception), in the earlier stages of dementia, is still denied to us, as is an ethical post diagnostic pathway of care, the reason I continue to speak out about it. With dementia, we are not supported or enabled in anyway yet, to live well, and so the discourse of tragedy that continues, stops many people thinking it is possible. It is very unlike cancer in that way, at least from my and many other people with dementia’s perspectives around the world. For each negative comment I have ever received/read about living well, I would receive/read over 200 positive ones, especially from people with dementia saying, thank you, for encouraging us to see that living better, for longer, is actually possible for some of us.

      • Yes of course. But it is important to also support people in the later stages of disease so that they and their families don’t feel that they’ve failed to “live well” when the progression of their dementia makes it increasingly difficult to work, communicate etc in the some way that they used to do.

      • Good point Sal… and I hope I never to do that, but will think about a blog to address it. I certainly never intentionally mean to.
        So often others are telling me what to say, how to say it, what not to say, what to think, how I should be feeling or reacting to dementia, what it is like to live with dementia (almost exclusively by people without dementia) and almost everything else, I’ve given up trying to please everyone, or in some ways, anyone. Almost daily, many of us are spoken down to, ignored, or told our doctors are wrong or we are lying, that in the end, we cannot afford to worry about how others respond or react. That is their journey.
        I write and speak from my own reality and truth, but if others ever feel hurt by what they read or what I say, I cannot impact their reactions or responses. That does not mean it feels good if others find some of the things I write or say hurtful, or that I ever mean for it to happen. In a landslide election, often less than 50% give you the vote… of course there will be people who have not had the same experience of dementia as me, and I can do nothing to change that either.

      • On another note- I am sorry that your evidence is that many people aren’t supported to live well with dementia. I am lucky that my Grandmother(deceased) aunt (deceased) neighbours (a couple, deceased) and Father were and are enabled to live full and productive lives, mostly in their own homes, until absolutely their care became physically possible or (my neighbour) they died at home of natural causes. This was and is possible with the loving support of their family, friends, neighbours and yes, doctors. I just want to acknowledge that it can and does happen this way. 🙂 x

      • I am so delighted to know you have so many examples of people being supported so very well Sally… sadly this is less common, and there are many more of us who have the exact opposite experience, also very common all around the world. 😦

      • I’m very sorry for that and I hope your research includes evidence of the degree to which disengagement is prescribed so that it can be combatted with clear eyes.

      • Ah… yes, now I realise what you mean! I hope so too, and included in my research will be the effect of language on our experience of good or poor care, and its effect on stigma and discrimination. There seems to be an slowly emerging groundswell of support for the change in language to a more respectful and enabling language, and its impact on our lives and care, and our (people with dementia’s) right to decide what is and isn’t respectful language. xx

      • Hi again Sal.. I’ve been thinking today quite a lot about this conversation here, and felt quite saddened that my own experience has been so awful, and my family and some ‘friends’ have not been supportive at all, quite the opposite some of the time… in fact it has brought me to tears… but it has also helped me rise above the devastation that dementia can be, and fight hard to live as well as possible for as long as possible. The silver lining I suppose…

      • It’s no fun being criticised. I hate it, but I have come to realise that even in the most ignorant criticism there is often (or even usually) some valuable truth. If you believe everyone has a valid voice you will seek the truth that resides (however slight) in every critical comment/appraisal/complaint whatever. It’s how you can be better. 🙂

      • Sal… that is always my goal as well, and I have learnt so much by listening to criticism, and hope I have become a better person for it. As always looking in the mirror, perhaps also the most difficult thing to do in life, is the greatest gift we can give ourselves. And I’m not talking about checking our makeup, if we actually wear it! 🙂

      • Kate, dementia is not the only thing that causes friends and family to abandon people. I can attest to that. I think it also has to do with walking a road less travelled. Likewise, writing and research are mostly solitary activities. Also, being a pioneer and/or an advocate of anything tends to be isolating. When one is ahead of the crowd, it generally means not being WITH the crowd. Again I am personally well acquainted with all of this. Finally, women who break the rules and strike out on bold adventures often find themselves alone in their endeavours. I envy you your BUB 🙂

      • Agree with everything you have said, including having a smile about you envying me my BUB! He up for hugs but he’s definitely not available!! 🙂

    • Hi Sally.
      My name is Steve.
      I am 45 with Lewy body dementia with Parkinsons disease.
      I wanted to write to say I support what you say.
      When seeing people who have dementia getting out there and living well with dementia can seem totally different to your story or mine to.
      I have good days and bad and try to make the best of things.
      But the reality of even just going to my local shops needs to be planned out and timed cause basic things are hard to do.
      So please know I totally understand how you feel seeing those other people getting around and doing things. That’s not my world either.
      Thankyou for speaking up for many people who see things like you.
      I know Kate is happy for you to share your thoughts and I’m happy you did.
      I’m not saying you need to live in misery but its good for those people like Kate who are able to speak out and travel around to hear there are people like us who don’t live well with dementia so they can factor that in when they are speaking to people in the industry.
      Your story is just as valid as someone else’s with dementia.
      Thankyou for doing the show Kate and to the other people.
      I think we are doing a good job of raising awareness for dementia but I think in all of this we are actually missing a huge chunk of people who can’t relate to people living well with dementia.
      This makes me sad.
      So many people with dementia are not being heard.

      • Thanks for sharing Steve. Firstly, as far as I know, Sally is not herself living with dementia, but has experience of it with friends and family. Your comment read a little like you thought she had it, maybe my mistake. I am always happy to hear from you and others here, and am sorry you feel sad about those of us speaking out about trying to live well with dementia. Most of us, when we do present, also speak of the bad times, and I certainly don’t gloss over it. But I disagree with your comment that we are missing the less positive things of dementia, as have felt for years, ONLY the tragedy of it has been covered. Many of us believe this has set too many people up to not even think it is possible to have some good days, and is part of the reason we are striving for a more balanced view.

        Even with cancer, people have good days. I’m almost certain though, if people stood up and talked about living well with cancer (and many do), others do not feel they are doing anything wrong, or giving an unbalanced view, but rather, applaud them… and say well done. From my perspective, this is just another way to see things.

        Take care Steve, and also, perhaps you would think about getting more involved publicly again, to ensure your view point is shared? Kate x

      • Hi Kate.
        Yes I did think Sally had dementia.
        Sorry about that.
        My mistake.
        Oops…sorry Sally.
        Apologies all round.
        Hi Kate…
        Thanks for your feedback.
        I don’t feel bad that people are speaking about living well with dementia.
        I think that’s great and fully support that.
        I think my only point is that we don’t all live well with dementia.
        That doesn’t mean we don’t have good days or weeks.
        My only concern is that if the only stories we see or hear are from people living well with dementia alot of people with dementia can’t relate to that.
        Often it’s the ones who can’t speak out or use a computer or cant phrase sentences are overlooked and the two sides of dementia, good and bad are quite far apart.
        We definitely need to hear the positive side of dementia but the opposite to.
        Thankyou for being out there and raising the flag for dementia Kate.
        There is always going to be opposite point of view here and there.
        Good on you for speaking for those that can’t.
        I am unable to get back out there to fight the dementia fight.
        It’s just to hard for me.
        So my only real input into any dementia related places are here on your blog or on one or two Facebook groups.
        Apart from these avenues I can’t speak out anywhere else.
        Thanks Kate.

      • Hi Steve… I’m sure Sally didn’t feel bad you thought that! She’s a lovely person, someone I went to school with, and it probably made her smile! I’m delighted you feel you can join the conversation here too, it is wonderful to be in contact, as we all really miss your presence and insight at our AADAC meetings. One of the things you said at our first face to face meeting has always stuck with me, it was something like; ” we have a right to be able to go out, to places like the Post Office or Banks, even if it takes us longer to achieve things!” You said it with such strength, and it has helped me a lot, so thank you.

        Re the stories in the public of living well with dementia, versus the opposite experience, I’d have to say, from all of my reading and television viewing, it is almost ALWAYS the other side of the experience, the ‘suffering’, and almost never the stories of those of us trying to live better than the public perception.

        We all have the right to tell o ur own stories, and I love for you to share more of your here, any time you feel up to it. Even a guest blog if you wanted to write one. Take care, and love to Sonya as well Steve… huge hugs always, and we really do still miss you at AADAC! xox

  6. …….Dearest Kate….you are correct in what you say,….considering the time available, SBS did a fantastic job in just one hour……….and yes, the comments received are valid comments too, people living with Dementia, families, carers, feel alone and all have needs to be fulfilled…..one programme cannot do this, but by God it was a very good start………considering nobody really knows where to start !!…..

  7. Dementia is like the rest of life – there are ups and downs, good and bad, blessings and sorrows, joy and despair, etc.

    I could not agree with you more re “it is time, I believe, that we show all sides of dementia, and not only the tragedy of it.”

    When people are conditioned to believe dementia is a “death sentence” and the people who have it become mere “shells of themselves,” then oops! guess what happens? Sure enough they are treated in a way that eventually fulfills the prophecy. I see it every day with my Mom.

    Here’s a little something for you Kate: http://shequotes.com/2015/04/30/elizabeth-gilbert-admires-women-who-handle-st-shequotes-quote-life-challenges-adversity-courage-strength-grace-determination/

    🙂

  8. Good on you Kate. Of course there are positives and hilarity at times – certainly in my situation – which make up for the days when things are not going so well. Of course it would have been a difficult program for the team to make, trying to cram in everything about the disease – it is such a vast type of disease that has not really been completely uncovered yet. It changes every day with every person affected by it. Yes I felt sad that my situation is totally different to yours, Ray’s and Elmer’s, but I’m sure you all have your struggles in different ways that maybe I don’t have to deal with …. yet. Live life to the full and enjoy yourselves. xx

  9. Life is what you make it.

    But often the effort people who live with dementia makes, is not celebrated. They are picked on because of it.

    People should realise that there is no reality, just their own reality and if they want they can live with it or they can try to change it.

    The World is only flat if you think it is.

    If misery isn’t making some people happy maybe they should try another way.

  10. Great post, Kate…Yes, the program did not show end stage but in 45 mins it could not deal with the complex issues of dementia. I think its important to know that people can live well with dementia. My Chris lived well within his limitations, even though things progressed to a stage where ACRF was needed.

    As with other terminal illnesses ( and life too is terminal) people are looking to have quality of life while they can and within the limitations that dementia may place on their lives. These issues are becoming more important as diagnosis at earlier stages becomes available, and hence younger, active people are being diagnosed before major problems hit there lives.

    • Thanks Judy, and yes, we are all looking for some sort of quality of life, no matter how sick we may or may not be, no matter how progressed into a disease we may or may not be. That is our right. The thing that continues to ‘shock’ me, is it is ok to strive to live well with cancer or any other terminal disease, but not dementia… how weird is that?!

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