Let us live better with dementia

mortality 2The last few days have been racked with a sadness after the loss of a friend with younger onset dementia; for many of us there has been a revisiting of our own mortality, and the issues many people with dementia and our loved ones discuss, especially in the early days following a diagnosis. The fear engendered by the hideous and negative media campaigns, the language of war being used to describe dementia, and the negative dehumanising and demeaning language to describe our experience… no wonder many think it is preferable to commit suicide. ‘Society’ is still determining it is not possible to live well with dementia.

 

The question so many of us have asked is this: should we take our own lives, to stop the ‘suffering’ that society tells us (repeatedly, and oh so very repetitively) we will experience?

As well, we have Alzheimer’s Associations and Societies who fundraise primarily to support the operation of the organisation, and for a cure, and who’s services for consumers is primarily for family carers, not people with dementia. And just lately, more of these organisations are cutting down on services to consumers, but still wanting us (people with dementia) to support their fundraising efforts.

On top of that, the absurd and absolute focus on research for a cure, and of a ‘world without dementia’, and so little mention of how to improve the experience of living with dementia, no talk, other than a catch line here and there about living well with dementia, but no support on how to do that. For goodness sake, how much money have we ploughed into cancer research, and for how long, and do we have a world without cancer yet?!

The blog I wrote recently No longer fearful of dementia talks about overcoming the fear of dementia, the fear of the symptoms of dementia, but,

our fear is fuelled by the focus on a cure, the lack of good care, and the focus by the media, associations, and the community on the ‘suffering’.

It is very challenging to overcome the fear of dementia, made almost impossible because of the negative dehumanising narrative of dementia.

The power of language is more important than some would dare to believe, and it is not just simple semantics, but can in fact mean the difference between living with fear or living better with dementia, or being willing to accept the changes of dementia or take one’s own life to avoid the advancing symptoms of dementia. Language is very powerful, perhaps even more than those without dementia can even be bothered to imagine.

Finally, I am also starting to believe the many books and articles being written about people with dementia, even the so-called ‘tributes’ and ‘memoirs’, are doing far more harm than good, perhaps not to other family carers, but to people with dementia.

To have our ‘suffering’ so exposed publicly, in terms and with language determined by people without dementia, undermines who we are, and our experience.

Let the carers write about their own experience (or their mothers, fathers, or the family or friend they have supported), not our experiences. Their accounts of our experience of dementia and the ‘burden’ we are to them and to others, also encourages us to want to bail out, as none of us with dementia want to, nor intentionally cause this suffering of those we love.

I was admonished for writing this blog, and even asked to take it down, but still believe I had a right to voice my own concerns. Authors, whoever they are, and regardless of their opinions about their own work or their own right to write about someone with dementia, need to be reminded not everyone will admire or even like their work. I learnt that through blogging many years ago, and always remind myself that in a landslide election win, it is often less than 50% who vote for you. Writing with an audience is no different.

If I had a son with severe mental illness or cerebral palsy, I am pretty sure society, and my son would not be so thrilled if I wrote publicly about hard it might be for him to live with cerebral palsy, about his ‘suffering’. It would be ok to write about the challenges I faced as his mother, but only ok for him to write about his own challenges… surely?

Perhaps I’m just an idiot, or it’s the dementia, but I do think I’m onto something here…

We all know we are going to die, we all know we have been diagnosed with dementia which is a terminal illness, but that is not a reason to encourage us to give up and die now, either literally, or by giving up.

This has been a particular tough blog to write, in particular writing about dementia and suicide, as this is a very sensitive topic to many of us living with dementia right now, due to our mutual and recent grief, but it these are the types of conversations I believe we need to have.

We do indeed, live until we die!

If only we were supported to.

 

83 thoughts on “Let us live better with dementia

  1. Pingback: Welcome to 2016 | Creating life with words: Inspiration, love and truth

  2. Kate, wakes me up and helps me realize the damage done to us through the raw negative depictions, harsh language, and conversations about us without us! Kate is what a true advocate looks like! I’m supposed to be the impaired person but the DAMAGE done and the victimology surrounding the perception of PWD as being a burden is as clear as day to me! Kate gets to the core and the blood and guts when it comes down to STIGMA and does not beat around the bush! And STIGMA is what it comes down to Kate and I love that you have our backs…hooray Kate! Keep cutting through the stigma Kate, We are LISTENING!

  3. Hi Kate.
    Thankyou for allowing everyonr to leave their commemts about youy post.
    I really appreciate taht.
    I have not realy agree with the “language of dementia” or “living weel with dementia” terms.
    Sometimes yes thsts true.
    But I dont live in the same circles of people you do.
    It’s difference for me.
    I’m trying to understand what’s you say about negative media.
    I like to have an education opionon.
    My personal experience is not seeing that negatively side of it.
    On tv or other placers.
    Can you help me understand how negative language or not livings weel with dementia is in the media.
    It’s not on at the places I see like tv and newspapers.
    Where I live the media is good bit I haven’t had a bad media experience.
    Maybe you can send me some linkd or something so I can read or see it please.
    Thankyou Kate.
    Best wishes

    • Thanks Steve… and of course, you are right, not everyone is able to live well with dementia, and every person’s experience is different. I will see if I can either write a blog that explains it better, or find some links for you to read that help explain what I mean better. I guess, in simple terms, if you keep calling all people with dementia as ‘sufferers’ which implies it is ONLY a bad experience, then it stops some of us from trying to live better with it, in spite of it, for as long as possible. It’s like always telling child they are wrong, as if you keep doing it, many stop bothering to try. That may not explain it either.. I will keep working on it. Hugs to you and Sonia and you family Steve xox

  4. I was one of the privileged few who shared “D”‘s inner circle of confidantes in the last weeks of her life. The conversations were private and precious to us. You are an outside observer only.
    You cannot ignore what the end will be for all of us with dementia by just ‘pretending’ and focusing on ‘living well’. Yes, in the early years post diagnosis, many of us are operating on a ‘cognitive reserve’ and can lead a fairly good life, but the time is limited and along with living well, one has to be responsible and face the mortality of this disease as well….taking care of the business end of death that will come, maybe sooner than later for most of us. Arguing over words, (such as ‘prescribed disengagement’) to describe this disease or living with it doesn’t change the reality. Your essay undermines the dignity and truth “D” tried so hard to live.

    • Hello Kathleen… firstly, my apologies if you feel this blog disrespected our undermined the dignity of our dear friend, who I may not have shared with as much as you, but have known through DAI for some time. Disrespect was not my intent at all, and I FULLY support a person’s right to euthanasia. My point was as much about the negative effects of the media always using fear and tragedy to talk about dementia, as the experience is not all bad, all the time, for everyone, and many of us diagnosed have strong feelings this fear ongoing may be part of why some cannot face the later stages, that is all. Of course, we can agree to disagree, as we all feel and think differently about things. And yes, I know full well my time also is limited, and one day, expect the cognitive reserve will run out… denial has been my and my husbands greatest saviour, but may of course not work for others. I hope we can all pay a lifelong tribute to her, as she was one of the gentlest souls I had ever met.

    • Hi Kathleen.
      I’m very sorry about the loss of your dear friend.
      I am 45 with Lewy body dementia with Parkinsons disease.
      Thankyou so much for sharing.
      There are so many journeys people with dementia experience.
      Each one is different and its important that everybody’s story is heard.
      I believe the focus on “the language of dementia” is causing more harm than good.
      Not all of us live well with dementia.
      It’s refreshing to hear your point of view.
      I agree with you 1000%.
      Thanks again for sharing.
      There are many of us with dementia, alot who can’t speak for themselves who I’m sure are thankful to.

      • Hi Steve, great to see you joining the conversation here. I agree, not everyone lives well, but I completely disagree that changing the language to one that is more empowering and enabling, will make a difference to many others. The current discourse is fatalistic, disempowering and ensuring we remain hopeless. Of course, we may have to agree to disagree on this, but that is everyone’s right. Take care always, and hugs to you all up there.

  5. Reblogged this on elhijodeveronica and commented:

    Can’t stop reading and re-reading this brilliant piece. We are lucky to have the voice of Kate Swaffer to highlight the extreme imbalance in carer-focussed (implied blame on people with dementia) representation in the dementia field.

    As Kate says, feel free to talk about your experience but don’t vilify the person with dementia in doing so. Many carer organisations have high profile and rightly so but this cannot be at the expense of the welbeing of people living with dementia. Let’s end the stress and burden model! This is a must read.

    • Thanks MB… I have read your article on Still Alice, and agree with some of it. I also would not recommend the book as reading for someone newly diagnosed, and will not ever go to see the film as I am so tired of the narrative of defeat and tragedy, something I think is contributing significantly to the poor experience many people have with dementia, and the lack of willingness sometimes to try and live better with it… of course as always, just my thoughts, and then, only for today! xx

  6. This post reminds me of why I am so very leery of assisted suicide, which I finally blogged about last week. The emotionally and financially depleted carer might be the one suffering, not the person in question (i.e. the one with dementia, etc.) And as for a person with dementia, just as a person in any other set of circumstances, whether or not they are suffering is an individual matter. I have seen plenty of people with dementia living very contentedly, and plenty of people with no memory loss or other health problems suffering intensely. There is, as you suggest, no formula for predicting who suffers from what, nor how one will feel in their final days. Karen, of offbeatcompassion.com

    • Thanks for joining the conversation here Karen… all very big topics with very unique and individual answers for each and every one of us. I agree with assisted suicide and VE, but do not think I would go down that pathway, due top having experienced the loss of people I love through suicide, and I know the devastation it can cause. Perhaps if it was legalised, the grief may be different… who really knows.

  7. Very interesting discussion. The ability to early diagnose encompasses a greater number of people living with dementia, but is this number really any different. When you consider the number who lived well (with a little help from their friends) with dementia without diagnosis were excluded from the statistics and the conversation you are now having. The perception of a dementia diagnosis is of a precipitous plunge from living well with dementia, to immediate aged care. Nothing could be further from the truth, yet this perception is probably strongest in the medical profession. I have encouraged a number of associates who are now deemed carers to read your blog, only to be met with blank stares. The reason? They are following their GP’s advice. That doesn’t stop me from preaching your gospel of living well with dementia with a little help from your friends.
    Jeff

    • Hello Jeff… how lovely to hear from you, as always, and thanks for your support and for recommending my blog. Some will want to live better, some will just accept the (lousy) advice they are given. Researchers suggest the numbers diagnosed now are way under the numbers of people actually living with dementia, as the fear and negative narrative around dementia makes people too fearful of being diagnosed at all. Sad really, as some people may only have something as simple as a Vit D deficiency!!

  8. On this Easter Sunday it is wonderful to read your words of hope and renewal. My husband was diagnosed in 2012, and the Drs proclamation, quickly followed by: get yourself into this clinical trial of the Drs liking and quickly take care of your affairs, shattered our world. We have worked through the past two and a half years to put it all back together again. We are no longer focused on his demise, but rather on all the fun things he and I love to do. We are truly living well with dementia, though with absolutely no support from the medical society nor my so called friends, who are appalled that we continue on our merry way instead of sitting around waiting to die. In effect, we have ignored his diagnosis and have adjusted as need be to his changes, I know you may not appreciate a caregiver responding, but in our case I am our spokesman. Great blog you have written!!!

    • Woo hoo… stay focused on the FUN things in lie, and ignore the Prescribed Disengagement completely!!! Hopefully together we can find a new way to live with, and deal with dementia. One that is more positive, and far less dehumanising.

    • Wow! You may have just changed my head too!! Tired of waiting for my doctor to get back to me after every visit about the clinical trial that I am supposed to start. Been now 4 months and just in the intake part….think taking the meds and continuing to eat well and exercise and maybe even find a way of enjoying my partner, family and friends might be a better approach. You spoke what I was thinking!!

  9. Interesting conversation, Kate & Shibley. Hi

    I have no answers, of course, to how each of you escapes the current mob (mentality) you’re forced to address & turn around, to be properly heeded. Something tells me the two of you need to address the uninitiated: break away & blaze (properly) the less trodden path you’re on. Together.

    Co-write a best seller. Both of you write so clearly. I nod along reading each of you separately; but reading you together (just now) leaves me guessing less. Share your obviously unique relationship with mainstream readers.

    I have little interest in inconclusive “potential” preventions & “maybe” cures taking both centre stage & the majority of research funding while there are (and will always be) PWD with newly acquired needs well in advance of any need for end-stage ‘BigCare’. I can’t be that unique.

    ‘Managed Decline’ is as succinct as ‘Prescribed Disengagement’. Neither of you waste words. Give us the opposite constructs as prescriptively as “we” give you the bucket of negative memes. Don’t worry about being prescriptive, apologise in advance. You have to leave the next generation something to work with.

    Sorry to be so abstract.
    Good luck. Enjoy your upcoming conference.

    • Hello our dear twitter friend… lovely to hear from you hear as well! And yes, we have even spoken of co-authoring a book together!! Perhaps in our spare time as I know Shibley is already working on another one, as am I. Don’t ever apologise for being abstract either… it works for me!! Hope we meet some day too!

  10. Thank you for your clarity and honesty, I am a healthcare who feels it’s essential for people like you to speak out….people need to hear from you if we are to support people with dementia in meaningful ways that scratch where you itch……

  11. Pingback: Let us live better with dementia by Kate Swaffer | Melanie's Blog

  12. Thank you Kate. Every time I feel a bit despondent I’ll remember this blog and your strength.

    I can’t honestly believe that the services we (PWD and those living alongside) so badly need will be available in our lifetimes but it’s worth fighting hard for…and hey, my “1st world” angst pales into irrelevance when I read what’s happening in Nepal and think about Africa, for example.

    You just keep shining your bright eyes on the dark and dirty sides of this global health debate! At least the days of “asylums for the insane” are no longer the end of the route for many PWD – as still happened just a generation or two ago in Australia, the “lucky country”.

    I’m convinced that only the global voices of PWD will succeed in diverting some funds for research priorities away from multinational pharma profits (“anyone for Aricept?” is another aspect to prescribed disengagement), and look instead to action research that really supports PWD sustainably. So thank you for the WHO Geneva speech, and sock it to’em in Perth!!!

    As for life and death, few of us will be able to choose our end-of-life as we would want it to be….pas vrai?

    • thanks Doll! and I heard from some academics and clinicians (medicos) last week, many doctors falsely diagnose people with dementia as having Alzheimer’s, just so they can prescribe Aricept!!!!! what is wrong with these people? or is it the benefits received from the drug companies? my head hurts most of the time, but some days, it is much worse becaue of unethical shit like this…

      • The other thing Kate is that people are so often not told of their diagnosis till late, so that there is little they still have the power to decide at that stage…..whence Aricept lining Big Pharma’s pockets very nicely, to reassure the rellies (who are told!)

  13. Hi Kate
    I’m so sorry to hear of the loss of your friend, Dena.
    You speak so much truth from the heart. I too think your blog should be published in a newspaper or magazine. We all think the same as you have written. Where I live in the UK we have a dementia champions group and are working with all groups of importance to get people to listen and understand that we are living well with dementia and they are happy as it costs less if we live well. I am so lucky to live in a city where dementia is one of the top priorities. We even have a person with dementia employed by the mental health trust and what an ambassador for how to live well with dementia he is. Keep on being open until everyone listens.
    Have a happy Easter and keep on writing if the truth hurts these people then tough.

      • Hi Kate, that would be great I’m sure some of our PWD and others, who help us to live well with dementia would be really glad to meet you I know others read your blog and see you as inspirational. Especially our young dementia group. It would be great to see the differences in care in the UK and Austrailia. We can all learn from each other. We are probably a lot better than other areas as there is different things to do most days.

  14. Kate I believe you are spot on and speaking from experience through speaking to my wife who is my full time carer about this very issue. When I was first diagnosed I went through what most people living with dementia do. I truly believed that I was being a burden to my whole family and had a great deal of trouble and tears coming to terms with everything spinning around in my head. Yes I did think of the obvious way out. At this time I had to deal with filling out the ACP and power of attorney, etc. What help did I get at that stage. NONE. I was told by AAQ that they could provide aa councillor. I refused as I did not want to discuss these personal issues with a total stranger. It is and was only through a lot of discussion and love from my wife and family that got me through until I discovered my friend, mentor and saviour Kate. I have also discussed the issue of carers writing about how their loved ones felt and so on. I asked Sue if she knew what was going on inside my brain, she said no she did not and would never presume to. I do not agree with people making money from their relative/love one who hs said or done some things which may or may not reflect wwhat they are truly thinking. I do not know what goes on in your mind and would never assume to know that. The issue of a person living with dementia and especially early onset, deciding to end theeir life because they do not have the required support from day one. Their needs to be more emphasis on this and more money needs to be spent by Alzheimer’s International to prevent another single person taking such an action because they can not handle what is coming in the future. I have recently tried to get AA to print some pamphlets telling people what services are availaable to them when they are first diagnosed. These would be distributed to all buildings owned by our local council. They do not have the money in their budget for such a project. AA must take a more hands on approach instead of the current approach. If these phamplets save one life then they have paid for themselves

    • Onwards and upwards Mick… the book contract I am about to sign, will cover all the things a person with dementia and their family needs to know, in ONE book! Although it won’t be out until 2016, I intend to publish some as articles before then if possible. But as you say, if some additional; and practical support was given, it could even save a life!!!

  15. Reblogged this on george rook and commented:
    Two good topics here: those of us living with dementia get little support to live well; carers get more, it seems, and are listened to more. Remember the lepers in Ben Hur. Listen to us.

  16. My dear Kate,

    I’ve been thinking of you these days, wondering about how you were coping with the loss of your friend. I suspected that you were deeply saddened and taken aback by what I now understand was a sudden death. I am not surprised to read that, in addition to sadness and surprise, you also feel a fair amount of outrage. And who wouldn’t in your shoes?

    With all the prejudice, discrimination, lack of dignifying support, and little understanding of what dementia is really like “from the inside out,” it is nothing less than a miracle that there are advocates living with dementia willing to fight the good fight to change this unsustainable status quo. From what I read in your blog and from what I hear from other people with dementia, the pressure you withstand in carrying out your advocacy work is often overwhelming.

    But, as you often remind us, the fight against cancer prejudice was very similar 20-30 years ago. Although to this day, there is still no definite cure for all types of cancer, the number of cancer survivors is dramatically increasing thanks to a plethora of better treatments and support. Our shared hope is that, in the years to come, dementia will follow the same path, leading to a systemic change in national and international policies concerning ALL aspects of the disease, from care to cure.

    Although still very dim, there is light at the end of this very long tunnel. Your recent speech at the WHO conference and the upcoming ADI conference in Perth, packed with presentations from/by/for people living with dementia, are just a couple of the many proofs that times are indeed finally changing.

    It will take a while for the paradigm to shift but, as more and more people living with dementia around the world will get together to claim a better life, both because and in spite of their illness, a critical mass will finally spawn this much-needed revolution.

    I am deeply sorry for your loss Kate, but please do remember that we are all here for you, especially when the going gets tough and apparently meaningless.
    A huge hug from Italy,

    eloisa

    • Thank you my dar online friend… soon to be having a hug in Italy friend!! It is wonderful to know there are so many supporters, not of me so much as of all people with dementia, and much importantly, supporters for change. xox

  17. Hi Kate, Sorry for your loss. I want to make a difference and believe strongly in upholding the human rights of people with dementia. Many people are ignorant, however many do care they just don’t know how to express themselves very well. It is through people like you that awareness is created. You are on a mission and you are acknowledged. I cared for my father for 7 years but I was not educated in his disease. I am learning now and my approach has changed and now I to want to share with others. I did the best with what knowledge I had. Hindsight does not help me or him, so now I make the most of what time I have left with him and I know he understands even when the world thinks he is ‘off with the fairies.’

    • Hi Cynthia… I am so glad you and your father are spending good times together now, and yes, we all can learn so much from each other. he challenge has been, no-one was even bothering to include the people with dementia in the conversations! Take care, and thanks for joining the conversations here.

  18. What I believe you’re onto is your (correct) conclusion that a climate of institutional dehumanisation, fear and the “shock doctrine” is undermining people’s confidence in the future, potentially with catastrophic consequences?

    I agree with Pete – this needs to be explored, as it can clearly impact on difficult conversations about the future in planning for years ahead.

    A big part of the solution is to give people trying to live better with dementia some fundamental control where possible, or as someone else put it:

    God, grant me the serenity to accept the things I cannot change,
    The courage to change the things I can,
    And the wisdom to know the difference.

    • Thanks Shibley… and it starts with prescribed Disengagement, where we (PWD) are told to get end of life affairs in order, get acquainted with aged and go home to ‘live’ for the time left, with NO support to live well or stay engaged with your pre diagnosis life, and, on top pf that, our partners if we are lucky enough to have one, are told they will soon have to stop there lives to care for us full time! Hopelessness, learned helplessness, victimhood, martyrdom, stigma, discrimination, oscillation and every other negative side effect currently from dementia comes to mind!

      • Your construct of “prescribed disengagement” is precisely what it is. I think it’s the beginning of an institutional ‘managed decline’ of a person, and this is subject to a confirmation bias when some people find their jobs taken away or their driving license revoked. Unless this new lifestyle is stopped, it can be subject to intense feedback, so all the decline becomes a self fulfilling prophecy. As Mick Carmody will say, I suspect, at the Alzheimer’s Disease International conference next week, stigma and discrimination then get chucked in the mixer, so individuals who’ve received a diagnosis of dementia get attacked from all angles. I find it utterly disingenuous Big Charity saying ‘it is possible to live well with dementia’, when they sent out sporadically a torrent of negative memes which would be bound to make anyone feel depressed. Whilst I don’t believe ‘dementia friendly communities’ is the right term, thinking about how to start a cultural turnaround is a key to this. But I think we will always be lumped with a feeling of failure of tomorrow if we don’t find a cure (most likely = we won’t find a cure as relatively rarely dementia is due to a simple inheritance), while totally wilfully neglecting a failure of care for today.

      • Again, thank you for the continued conversation… it is the seemingly wilful neglect of those of us living with dementia that is failing us the most, or the refusal to consider our care in equal proportions to finding a cure. We all agree the stigma and discrimination is still VERY much in the bucket too!!

      • Re our conversation here, I think this wilful neglect of people living with dementia is set to continue with private industry (enabled by public private relationships where the risk of drug development is mitigated by public monies) promoting prevention and cure. Even the ‘solutions’ for prevention tend to be healthy eating products, or drug busters such as cholesterol lowering drugs (statins). And nobody has convincingly answered our question: “what will a cure for dementia look like?” I feel queasy at re-tweeting memes on Twitter such as “end dementia” or “let’s make dementia history”, when I am well aware there are 47 million people living with dementia currently living in the world. The projections of people living with dementia by eminent academics are farcical, as we know what won’t kill you will allow you to die from another cause (e.g. successes in treating stroke in the next 10 years is bound to affect the world numbers with dementia), on the assumption that there is parity of treatment in low and high economic countries (which there isn’t).

      • Sadly, I think you will be right.. this neglect will continue on despite our valiant efforts and loudly voiced concerns. The tragedy is, until some of these people get dementia themselves, which statistically is quite likely, they will probably never listen or change.

  19. Kate you always touch me with your words and your passion. I am so very sorry to hear of the sad loss of a dear friend. Another sparkling star shall be in the sky now to remind you of this person forever, and to allow all of us who read your blog to reflect on the cruel reality that you have discussed so eloquently above.

    Your honesty, your integrity, your insight and your ability to point out the ongoing fears and disgraceful stigma that society has brutally attached to people living with dementia, points out what damage and destruction such ignorant labels creates. This is something we all need to constantly be aware of, so we can step in and be the voice for all those that do not have your amazing courage and fortitude. We owe this to you and every person living with dementia at the very least, as this is what compassionate and empathetic people in the industry should already understand.

    I totally agree with you and find I become extremely frustrated and intolerant with those that continue to foster negative stereotypical views on life living with dementia.

    All I can say is that I for one will do everything in my power to make a difference and promote what is true and right.

    You are my hero.xxxxxxxxxxxxx

    PS Happy Easter and chocolate smiles.

      • And I you dear Kate. It really is such a privelege to know someone courageous enough to actually describe to us what your reality consists of in the ever changing world of living with dementia.

        You are the only authority who actually KNOWS and can explain to us all what it is like to live with dementia. You allow me to feel validated in so many ways with what I have always believed in my heart, and have fought for in the industry for so long. You also make me step back and do my best to understand your personal journey in every way, as it allows me another step forward in my ability to see life through the eyes of another. Or do the best I can to see your reality in its complexity so I can be strive to honour your gift to us all. (which is you by the way)

        Noone can debate what you feel as you are living dementia and we all need to take on board every single aspect of your experience so that we can become better people for having such insight.

        You provide the cataylst to change in an area that is still misunderstood and I for one have felt that you have enabled me to stretch myself even further so that I get closer to a truer clarity of understanding and empathy.

        Thankyou for your spirit and for the graciousness you show in sharing with us a world that it is crucial we understand so we can make a difference to the lives of all people living with dementia.

        xx

      • Dear Leah, reading your words to Kate I wanted to reply to you also 🙂 your words also give me hope that things will change if we start sharing the message that life for those living it NOW is IMPORTANT and equal effort and funds must be allocated. I can’t even imagine how it would feel to be ignored when you want to live so badly!! I hope you don’t mind sharing my thoughts with you too 🙂 xx

      • Love the thressome chat too ladies – I was stoked to get your comment marjap2015. Thankyou for including me!! 🙂

        Working in the industry as i have for so long, my passion has been directed entirely towards changing the ignorant and stereotypical views out there, and the judgement calls made by cogntively aware indivduals, related to people who live with dementia. It never ceases to amaze me how rigid people can be and how they sometimes seem to believe it is acceptable to assume so much, based on their perosnal view only, whilst never looking at the source – the person who actually is living life with dementia, for the true answers.

        Kate should not have to fight for what is right – this is the unfairness. The profession and the caregivers need to take a step back and stop trying to pigeon hole people living with dementia, and instead start understamding that every single indivdual deserves nothing less than the best for themselves whilst living the journey.
        xx

      • Thanks girlfriends! I think what is happening, is that many people, including family care givers/supporters of people with dementia, have had the power for so long, their feathers are being seriously ruffled, their power taken away, and they are having trouble adjusting. For so long, people without dementia, have been declaring – media, publicly stated claims and/or memoirs, researchers, clinical providers, etc – what it is like for us, they are almost annoyed we (people with dementia) are standing up and saying it is not necessarily like that for us, and what’s more, we find some of the things they say about us, and the language they use to refer to us, offensive. Most people hate change… you two are obviously embracers of it. Wonderful you. xox

      • You know Kate – i so agree with everything that has been said – but you know what? And I suppose this is why I become so frustrated with the entire ‘need’ for change.

        There should not have been any need for change in the first place!!!!!!!!!!!! Common sense is just not so common among many people who are cogntively aware these days. Lol.

        How can anyone not understand that the obvious source for the truth of your reality and what you are living moment to moment, is you, and others living with dementia.

        By the way – wonderful you straight back and see you next week!!!!!!!

        xxxxxxxxxxxxxxxxxxxx

  20. I too appreciate your blog Kate. I hear you loudly and clearly and will reflect at length on this post, lest I can improve my support in any way. I am so so sorry for the loss of Dena. x

    • Thank you Denise. Reflection is, at least for me, the best way to make changes or improve my work, my thinking, and my actions. So few are interested in doing it though… thank you for always being willing to reflect. xox

  21. Wow Kate, Your blog needs to be published by the media so that it reaches so many more people.
    So sorry for your loss. Easter blessings to you and yours.

  22. Dear Kate, I appreciate your thoughts, feelings and you sharing them with the community ….you are definitely onto something and please don’t stop. I was a caregiver and completely agree with you…let the living live their life and we must all show respect & love to our loved ones especially when they are living with struggles. Happy Easter to you & your family….if you celebrate it 🙂 xx

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