Living with purpose

attitudeToday a number of people with dementia are either packing to travel to Perth for the 30th Alzheimer’s Disease International conference, or we are packed and almost on our way.

To suggest people with dementia cannot live meaningful lives is a big mistake; the challenge for us is that upon diagnosis, we are usually written off! This is changing, and as more of us write blogs, speak at conferences and events, and gather together around the world, either online or in person, the message is starting to ring out louder and more clearly.

When I was first diagnosed, the only words I can think of to describe it, is that I started to feel like a ‘non-human being’, as that is how many people treated me. They stopped talking to me, instead talking about me to my husband, often in front of me; my doctor stopped talking to me until I very strongly asked him to talk to me (!), and that feeling of being a non human would not go away. There are times when I come across people who still put me in that basket, but I will never feel like that again, not even if I get to the stage where I can not speak or write, and am failing to function on my way to dying. Of course, the other side of that coin, is those who say if you can function, then your doctor(s) must have misdiagnosed you, or you are lying about it…

There is NO VALID REASON to die at the diagnosis of dementia. Sure, some days, some moments, are truly awful. Yes, hideous, distressing, sad, and painful. But we all had days like that before dementia too, and most of us didn’t sit down and ‘die’ (give up living) the day we were diagnosed with any other serious illness. We must stop the Prescribed Disengagement that is being dished out to us as well, as this supports a pathway to death, and not a good life after diagnosis.

A new but great friend of mine Mick Carmody who is also living with younger onset dementia wrote this wonderful poem about his attendance at the International Conference that we are both attending very soon, which includes these words:

Excitement is building to a new level

How can we be allowed to live meaningful lives with real engagement and purpose, if the health care sector, and the community write us off upon diagnosis????? Mick’s words in this poem show well his excited,went and enthusiasm for living. Many of Mick’s other poems describe well the sadness and devastation of living with dementia; he knows there is a dark side as well, but is choosing to live better with dementia for as long as he can, and I applaud his efforts, and the support he is getting from his wife and family.

There are two sides to this lived experience of dementia, not just the tragic one, which the media and others insist on sticking to!

I believe it is possible to live a good life even with dementia, with purposeful and personally meaningful engagement, in part, if only others will let us, and if only we will let ourselves.  It is far too easy to be overwhelmed by the negatives of the disease, that the community and almost everyone supports as the  only way forward following a diagnosis.

Not everyone feels they are able to change their attitude about terminal, chronic or other serious illness or a personal crises, but it is, I believe, definitely worth trying. Some days, I have to pretend one of my best friends has just arrived, and I KNOW I would stop crying and be joyful if she (or he) turned up as a surprise. It works, almost every time. There are too many people around the world living better lives with dementia than society expects, and I am proud to be a part of this group.

34 thoughts on “Living with purpose

  1. Hi Kate
    Why don’t the professionals listen to the people living with dementia like they do with any other chronic disease such as diabetes. They are called expert patients because they know more about their disease than the doctors we are also the experts in what we feel and need and while we are able to communicate let us do so.

      • Kate and Lesley,

        I agree people with dementia “are also the experts in what we feel and need and while we are able to communicate let us do so.”

        And, to be fair, five to six years ago I observed my mother being unable to accurately respond to simple questions such as “do you make your own meals?” She would say she could do things which she was clearly no longer able to do.

        Whether this was pride, or not remembering that she could do things that she thought she could, or whatever other reason, the fact of the matter was that she could not be relied upon for clear information on her own condition.

        When I took her to the doctor in these early days, it was important for me to describe her condition to the doctor without her in the room so that he could get a clear picture of the “reality” of the situation (i.e. that she couldn’t find the bathroom in her own house, that she could not shower and dress herself on her own, that she didn’t remember if she had eaten or not, etc.)

        This did not mean that I respected her any less or that I valued her opinion any less or that I treated her as a lesser person in any way whatsoever. But facts were facts.

        She is now in what some people called the mid-to later stages. I’m reluctant to use the word “stages” because I’ve come to realize that the “progression” of the disease is not as neat and linear as people would have one believe.

        In any case, at the moment, while she her speech and her ability to articulate are impaired by aphasia, she is often able to communicate when she feels good, and when she does not, what she wants, and what she does not, if she has pain or not, and where the pain is if she is feeling some.

        However, she also sometimes does not know. For example, in answer to a question such as how are you?” She may answer fine, not so good, or I don’t know. It may be that the answer “I don’t know,” is simply being honest, and that many of us answer glibly “fine,” when actually we haven’t given it much thought thought, and/or we really don’t know if they’re fine or not!

        On the other hand, sometimes she will answer “I don’t know,” and be clearly frustrated by the fact that she doesn’t know. Other times she will say the opposite of what she wants.

        Again on the other hand, she still often has awareness and frustration around the fact that she is confused and no longer has the capacity to do some of the things that she used to do. She and I still have “conversations” about that, and sometimes I feel that at this stage she has MORE awareness and intuition than she had before. I wrote about that and shared a video example of a conversation I had with her about how she feels here:

        http://myalzheimersstory.com/2014/09/10/what-it-feels-like-to-be-confused-by-alzheimers-disease/

        Then and now, when people ask your questions but she doesn’t know the answer to, she will often turn to me, or look at me, or I get the sense that she wants me to help her with the answer, which I do, and then she fills in the blanks having been prompted, and I know that this gives her a sense of control, confidence, and security.

        Having been with my mother in such a close care partnering relationship for the past six years, I know her moods. I can read her facial expressions, her tone of voice, her body language, her eye movements; I can see the least changes in her overall state of being. I have become finally tuned to her. Like a mother is to her child.

        I understand she is not my child, and while some of her behaviors may sometimes appear childlike, she is not a child. She is an aging adult with dementia. Those facts engender certain needs and ways of being on her side. Her condition also means she is sometimes unable to articulate what her needs and desires are. When that happens, I believe it’s important that someone articulate an advocate for her. In my opinion, being a care partner carries with it certain moral and ethical responsibilities.

        I guess the bottom line for me is that we are all in this together. Further, each individual case is unique. Everyone’s needs differ. And while I agree with you that people with dementia must be given the opportunity to speak for themselves, I also believe the care partnering journey must truly be a team effort that increases the joy and well-being and reduces the pain and suffering of all involved.

        I think the “while we are able” part of your statement is important, and I believe when people with dementia are no longer able to communicate for themselves, it’s incumbent on those who love and care for them to ensure their voice is heard.

      • Thanks for sharing Susan… sometimes the ‘while we are able to’ is simply taken away from people with dementia, and they give up, but often, there are also the times ‘we are no longer able’ … and also, not everyone is positive, negative, optimistic, sad, motivated, or any other way, we are all, individuals.

      • thank you i always encouraged cose to know im not alone yes my daughter stands up for me as i shared earlir and i know she will all ways be with me , support me to know how this thing i have progres i can see whats happening to me helps me under stand a bit more thatk yiou so much

      • Yes, Kate, I agree. And also I wanted to again say that my experience with who are so-called specialists and experts in geriatrics including doctors, nurses and social workers is that the ones I have had contact with are sadly lacking in their understanding of dementia and people with dementia. Yes, I don’t have dementia, but I feel I have a better understanding of my mother and her needs with respect to living as well and as fully as she might until the end than any of the experts I have so far encountered.

        Thanks for the opportunity to say all of this. I don’t wish to monopolize your blog, but my voice is stifled elsewhere, so TYSM 🙂

  2. Great post Kate and also great comments by “AmazingSusan”

    But I think there’s a danger Kate in people – maybe even family members – expecting their loved ones to try to do more for themselves and not “sit back” and wait for the inevitable. Most people with dementia are those over the age of 80, and they are generally not the type to have your courage and initiative. At least not the current generation of 80 year olds. The same can probably be said for many of those over 70, and maybe even for males (rather than females). Their age, and the actual effect of the dementia itself (on the person’s personality and eventually their emotions) will mean that they become quite passive. I see it in my ~76 year old aunt who has Alzheimers.

    Great post, nonetheless!! 🙂

    • I’m not sure it is a danger to talk about being positive and trying to be more actively involved, just not all people can relate to it… in part, the current system completely supports us to give up and become passive, as well as take on learned helplessness, and I personally believe if it was a different more ‘living the best life possible, with dementia’ approach, as it is with other disabilities, many more would be more likely to live better, for longer. As always, just my thoughts. xox

      • Kate: “system completely supports us to give up and become passive, as well as take on learned helplessness, and I personally believe if it was a different more ‘living the best life possible, with dementia’ approach, as it is with other disabilities, many more would be more likely to live better, for longer”

        Yes! Exactly! I believe all efforts should be dedicated to helping each individual achieve their best possible life, whatever that means to them. Live until you die, don’t die before you’re dead.

      • i know as long as i go at my own pace,what ifeel like doing at that time,i am not too bad but when negative the same things i wouldnt want to do it i was asked make sandwiches ,the next morning i couldnt think how to do it and got so tearfull now i say no its learning time for me and its very ahrd confusing time

    • Yolanda, thanks for the compliments on my comment 🙂

      I think whether one sits back or reaches out and embraces life depends a lot on one’s personality. My mom has always been a real go-getter. She could never sit still even as a child and I heard many stories through my own life about her escapades and adventures as a youngster. She went on to become a very successful business woman and was always the life of the party.

      Unfortunately, when she was placed in a nursing home there was no effort to engage her with life. Instead, her amazing spirit was seen as problematic and she was sedated into compliance. She still is sedated despite my best efforts to change that. She never would’ve wanted to be drugged as she is. She would’ve wanted to keep going, to embrace life’s fully as she curbed. As recently as last summer, even in the late stages of the disease she was very clear about what she wanted.

      You can see it in the video at this link:

      http://myalzheimersstory.com/2014/09/07/the-main-thing-is-to-keep-going/

      I have advocated for her against doctors and nurses and social workers and my brother who is in control of her care. Mostly it’s been a losing battle. It may be too late for her, but I will continue to advocate for the sake of others.

      Some people are more comfortable sitting back, being in their rooms, knitting, reading, or watching TV, and that’s fine. We should all have the opportunity to live doing the things we enjoy most until we absolutely can’t do them anymore…

      Wishing you all the best, Susan

      • you sound like my daughter she knows ibeen out going and trys to encourage me not boss me to find my self wanting to do things then next day it just seems to slip away makes me sad cose of how i have been glad your fighting the fight it is good to be encouraged and not bossed about is more time for to think and do things in your own time not peoples time does this make sence to you sorry if i seem to repeat my self

      • There are many things that do not make sense about dementia and indeed the world, but sharing our lives in friendship can be helpful… take care Susan

  3. yes i agree people dont realise its not having a bad day it minit to minit,i have a wonderfull daughter who says the right thing to me and says mum your not dying your still got life and the right word can make alot of difference

  4. Go fight the good fight love you and miss you already, how long do you reckon it would take Boris and I to drive to Perth?

  5. I am 100% on side with you Kate.

    My experience with my mom shows me that many people simply do not understand this disease and the people who have it.

    Those who do not understand include doctors, nurses, social workers, caregivers, and not surprisingly family and friends because they rely on these so-called experts who are really not experts at all.

    AND no one should be considered dead until they die!

    http://shequotes.com/2014/06/25/shequotes-on-life-and-death-quotes-life-now-awareness/

    We all have the right to live, not simply exist, until our last breath. And I believe we also have the right to choose when that breath will be if we so desire.

    Enjoy the conference:)

  6. Thank you Kate. Nearly made me cry. Thank you for being my friend, supporter, mentor and one who gave my life new meaning. My quest in life is now and my personal quest is to impart this knowledge and understanding on as many people as I possibly can. Extremely well written and Again Thank you

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