Day 4: Dementia Awareness Month 2014

DyingProhibitedToday Health Consumers Alliance SA held an event called Planning Ahead 2014 to launch the new Advanced Care Directives in South Australia, and as part of Dementia Awareness Month 2014, I am writing about it today. I was one of the speakers talking about the importance of planning ahead, and  as requested, I am spreading the word, and posting the short animated video clip that was produced about it.

This cartoon was on my slide about death and dying; even being born is a terminal illness. I truly believe death and dying needs to ‘come out’ and we should all be having the discussion about what we want for our own death, and how we can share that time with more love and acceptance when our family and friends are dying.

This is a precis of my presentation today:

Planning Ahead Day 2014: Make decisions about YOUR future today, to avoid worry tomorrow

Thank you for inviting me to speak today, on such an important topic. I was also involved on in the reviewing of the development new Advanced Care Directives from the perspective of a person with dementia prior to its launch.

The benefits of making Advanced Care Directives

Having the best life we can is something many of us desire and work towards. How we or our loved ones, can die as well as possible is something many think less about. Today I hope to outline the positive reasons for everyone to seriously consider preparing or updating your Advanced Care Directives.

Why I advocate for Advanced Care Directives

I have been a family carer and formal advocate for two people, my father in law who died two years ago from Parkinson’s and Lewy Body Dementia and a younger friend whose family lived in the UK, who died in aged care at the age of 57 from vascular dementia over 12 months ago. Dementia was a catalyst for me to once again review my wills and other things like end of life wishes and care, and I understand fully the importance of doing this whilst I still have the capacity to plan for my own future.

In my experience as a family carer and then also a legal guardian, I can say without any doubt, that without ACD’s in place, it is not only difficult for the person who has become incapacitated or sick, it is a serious challenge working or even talking to the doctors and nurses at all.

The key themes I will discuss today are about having your say, reasons for planning ahead, who should make an Advanced Care Directive, the topic of death and dying, and finally a little about avoiding conflict. Most families I know are moderately dysfunctional, and this makes having ACD’s in place even more important!

Firstly, there should be “nothing about us, without us”, and that means you and me. If we don’t speak up, while we can, for what we want when we either have an accident that incapacitates us, or are diagnosed with an illness where our end of life care and health needs may need to be made by others – then if we haven’t made them, then we place a significant burden and responsibility on others, most often the people we love the most, and we may not be provided with the end of life care we would have chosen ourselves.

For example, I do not wish to be kept alive in the late stages of dementia, when I may not be able to swallow enough to drink and eat, by a feeding tube and intravenous infusion. I also do not wish, at my age, to be placed in a residential aged care facility.

Why plan ahead?

We all can become incapacitated. In no way did I expect to be diagnosed with dementia, a terminal illness, at the age of 49, and a mother of two teenage boys. It could have been a stroke, cancer, or a road accident rather than dementia, but planning ahead is very important for all of these things as well. It helps to guide others if something like that happens to you. It also helps family in discussions about you with others such as nurses and doctors as if you don’t wish to be fed through a tube or kept alive via life support, then you can say so now. It gives you, and your loved ones, peace of mind, and really helps the health care professionals in their caring role for you. It helps reduce family uncertainty and conflict.

What will happen if you don’t plan ahead yourself? Someone else, maybe not even your loved ones, might have to make decisions about whether to resuscitate or tube feed you, or you may be forced into residential aged care for your ‘best interests’, or someone else’s convenience.

When planning ahead these new ACD’s would allow you to make lifestyle decisions about you want to live, the style of accommodation if you can no longer live at home including where, and also you can add personal choices about any cultural practices to wish to maintain, the care of your pets if you can no longer care for them, what clothes you want to wear, and importantly to me, your favourite activities… for example, there is NO way I want to be in aged care, and forced to play BINGO!

Who should make an ACD?

Everyone should make an ACD. Adults from various ages should consider making an ACD – young adults, older people, and our parents.  I really mean that. There are many benefits in having the plans in place.

When I updated my will, POA, Medical Directives and POA, my lawyer suggested if our children were over 18, they too should at least have a POG and medical directives, as there could be a case where they are put on life support, and the medical staff won’t easily accept your parental rights – not legal rights – to have a say in their future care. I believe death and dying is too much of a taboo subject in our society, and if we started discussing these things when our children started to drive, or signed up to vote, then we would be more comfortable about death and dying in general.

Death and dying is a part of living, and I often say, we live until we die, and also that we should live our very best life today, just in case we die tomorrow. Being born is in fact, a death sentence! There really is no need to be uncomfortable when discussing what we want when we are dying, as we are all going to experience it.

An excerpt from: How long have I got left, by PAUL KALANITHIJAN

“AS soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. Cancer. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I’d scribble in the chart “Widely metastatic disease — no role for surgery,” and move on. But this scan was different: It was my own.

I have sat with countless patients and families to discuss grim prognoses: It’s one of the most important jobs physicians have. It’s easier when the patient is 94, in the last stages of dementia and has a severe brain bleed.

For young people like me — I am 36 — given a diagnosis of cancer, there aren’t many words. My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”

I learned a few basic rules. The most important one was that I should have had my will, medical directives and enduring power of attorney in place before I became terminally ill, as my decisions making capacity is impaired due to the gravity of the situation, and the discussions are biased by our overwhelming grief of what lies ahead.”

We can never completely avoid conflict, but if I make my wishes clear, and legalise them through formalising my ACD’s, then others do not have to argue about what my wishes were or are. The benefits of making an ACD or a “living will” are significant and are the one concrete thing that can help to reduce conflict, at a time when stress, anxiety and possible family or doctor conflicts are high. Firstly, our wishes can be clearly articulated, and this helps our family to understand what we want when or if we can no longer speak for ourselves. Secondly when there is an unexpected sudden health crisis, and for example an ambulance needs to be called, the paramedics can be given the Directive as soon as they come and can then to act in accordance with our wishes, as they are legally obliged to do so. There will be no grey areas about what we want.

Planning ahead by updating or preparing your Will, Enduring Power of Attorney, Advanced Care Directives, and making a decision about whether or not you want to be an organ donor, and discussing this with them, helps reduce family uncertainty and conflict during an emotional time, and I would encourage you all to do so. After all, they are YOUR wishes about YOUR future care needs, including your wishes when you are dying. That way, no-one has to guess what your wishes are, reducing conflict amongst family or friends who are supporting you through a health crisis or at your end of life, and ensuring your health, lifestyle and end of life wishes are respected.

Everyone has the right to die with dignity… Only YOU can possibly know what that really means for YOU. Thank you.

8 thoughts on “Day 4: Dementia Awareness Month 2014

  1. Hello, you raise issues of life, not of death. If only folks would fully live their lives, not wait for cancer or dementia to scare them into considering the end of their lives as well as the rest of their lives, a lot of the fear of addressing these issues would fade away. Of course it doesn’t help when end of life issues are the first, second, or first thing we are advised to address once we have been given the news “you have dementia, probably of this or that type.”

    Life is about living, not dying. If you don’t fully live your life then you have voluntarily converted a part of your living life, a part of yourself into faux death. Family, religion, culture each have their own list of things to scare the life out of people, topics which should never be considered (pretend you are dead when it comes to talking about sex, drugs, rock and roll, politics), experiences of living which are not easy to control/ignore (death, loss of love, low feelings of self esteem). These psychological challenges convert into physical manifestations – most of which produce ill health. To my knowledge no one ever died from living too much, many of died from living too little. How much is too much is for each of us to decide for ourselves, but we tend to err on the side of too little (to avoid the possibility of disappointment, bad feelings, being alone) rather than too much.

    Thoughtful, articulate folks such as yourself need to stand up and speak out more about addressing life’s death tainted issues. Not to explain away the fear of death, but to incorporate the end of life as the natural conclusion to a well and fully lived life. Thanks for what you continue to you. You are an evangelist for life! I am pleased and honored to consider you a close friend.



    • Hello Richard, You have been my beacon of shining light and leader in the world for standing up and speaking out.. thank you! I am honoured to be your close friend, to call you my close friend, and cannot recall life when you were not in mine.. Kate xx


  2. Hi Kate,
    Great post and well done and yes we are all guilty of not addressing these issues.
    Are you happy for me to forward this post to family and friends?
    Hope all is as well as can be expected with you and your world.
    Love and Hugs,
    Valerie x


  3. I was very interested to read this article Kate. My Father and I have been doing just that, and I have begun the process too. It is SO important to have these discussions early on in life as family circumstances have proven. Thank you for being there for Michael and ensuring that his wishes were met.
    Keep these blogs going to direct people who have not thought along these lines 🙂


  4. Kate, this is such a strong post. For all sorts of reasons. Death and dying is, as you say, very much part of living and yet – to all our detriment – remains a taboo. It is of course one of the very few things we all know we will all encounter, and not making preparations is almost a form of selfishness. This was such a good point, so well made when you wrote, “if we haven’t made them (plans), then we place a significant burden and responsibility on others, most often the people we love the most”. Brilliant writing. I need the Very Much Like button rather than the Like button (as I often do with Gill Phillips’ blogs!)


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