Dementia, denial, old age and dying

“When it comes time to die, be not like those whose hearts are filled with the fear of death. Sing your death song, and die like a hero going home.” – Chief Aupumut (1725), Mohican.

My dear husband has worked it out, that is, why I occasionally re-blog or add interesting articles found on the internet, and then use them on my blog. I always state up front to you the reader to the original author if it is someone else. It is usually something I do (I say) when my brain won’t get off its butt and allow me to focus on my own blog, but I guess he was right when he said, it is probably because I am facing changes in my own world of dementia, or am wanting to crawl into the ‘oh so wonderful and oh so hard to crawl out of’ hole of denial. There are days when it is very challenging facing up to the changes of dementia, and the disabilities it ensures we have to manage. There is no reprieve from these changes, no balance; almost never any respite as there remains a grey cloud behind every denial bubble of what is ahead. My husband went home to be with his father as he died. He is peaceful now, and will not have to face up to his failing body any longer. It is a Blessing for him, and although we will miss him, we have felt for some time it was a cruel life for him, lacking in dignity and the will to live. Dying is what is ahead of all of us, whether it is from dementia, cancer, another disease, or just an aging and failing body. Being born is a death sentence. Living well is optional though, and I believe we need to make a choice eventually to have a good time while we are alive, or we are dead anyway. A wonderful speaker in Wellington Dr David Spektor, a Clinical Psychologist in Australia gave a presentation called ‘Death anxiety and the alzheimerisation of aging’, which among other things, discussed the value (or not) of being diagnosed with dementia after the age of 85. He proposed at that age, where statistically 46% of people have Alzheimer’s disease or another dementia anyway, what is the point of diagnosing someone with dementia. At the age of 85 and beyond (and younger in my opinion), we are failing in all areas of our bodies; our eyesight, hearing, joints, skin organs, systems and virtually everything in our body is degenerating due to age and/or illness, so why wouldn’t it be ‘normal’ for our brain to be deteriorating. If I put my glasses on near a mirror, I can see it is happening already!! Maybe at the later stages of our lives we don’t need a diagnosis or label of disease at all, but to find ways to accommodate the changes instead.

In the hearts of those who loved him, Dad (my father in law), died a hero.

21 thoughts on “Dementia, denial, old age and dying

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  6. Hi Kate,
    Thank you for the acknowledgement of this talk. As I have told you before your opinion means a great deal to me. I just wanted to add to what you have already stated and say that I am pondering three main questions when I discuss the diagnosis of dementia in those 85+ years old. These are:
    1. Is it helpful to label someone 85+ years old with dementia?
    2. Is our conceptualisation of how one ages realistic?
    3. And perhaps most importantly: does labelling someone with a “disease” stop us from recognising the inevitability of death and thus cease our research on how to help people in this age group live a purpose filled, engaging, and interpersonally satisfying existence in all stages of dementia and in addition how to best enable people to die with dignity and quality.

    Currently the focus is on an abnormal process (such as a disease), because if it is abnormal then it stands to reason there must be a cure. Consequently this causes us to put cure before care and my talk suggests that research in to cure is important but we need to balance that with research into how to care for people more effectively as well as prevention. Thus arguing for care before cure not cure before care.

    Hope this stimulates some debate.

    Thanks again Kate.

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    • Hi David,

      Thanks for adding to this very important conversation and clarifying your beliefs and ideas.

      I have been talking about the notion of cure vs care for sometime, and have felt the focus on research for a cure has been to the detriment of research into care, and therefore very unbalanced.

      The idea of exploring this further with you and others is very encouraging, and I thank you for being brave enough to bring these very important topics to the forefont too.

      Kate 🙂

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  7. Hi Kate and Pete, well thought out, well reasoned.
    And yes we all have to die…
    Glad you made it home Pete, and that Dad is now at peace.
    Big hugs to you both xxxx

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  8. Carols comments about Aricept are interesting, as in our case, Aricept did absolutely nothing. I watched helplessly as all types of new drugs were tried (I do not want to remember them) without benefit. From reasonable competency to Nursing Home in 2 1/2 years, frames my opinion that there has to be a better way without drugs. And yes, I am of the opinion that the drugs closed down Joanna’s will to fight, and that hastened the deterioration. I am with you Kate, on your opinion in this area. My condolences to Peter and yourself. Jeff.

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    • Thanks Jeff. As my husband and I keep seeing and saying, it is so very different for almost everyone. Same train, different carriange with regard to experiences and reactions to drugs and treatments. And thanks for your condolences. Kate

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  9. How does one define aging? in this day and age it is through looks rather than brain capacity, many elderly are over looked for their degenerating bodies are a symbol of things we don’t want – these are just the physical never alone the mental. Keep up the fight there are many supporters with you, drug companies – medical companies the bottom line is the dollar if it can’t be sold for a profit the product R & D gets scrapped.

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  10. I must “disagree” with you lovely folk. about the Inhibitor medications I believe you were both speaking about. I would NOT give up my “Aricept” for ANYTHING and my dear friend and mentor in Dementia who has travelled years before us LIVES absolutley as an advocate for then also now and I follow her due to her long journey with them and in her advice about their benifit.She is taking two types a combination that suppport each other, to accommodate her deterioating Dementia dissabilties and with her known success with them.

    As I have also. Before I commenced them my life was a daily terrifiying exitance. I was unable to keep mentally safe from mental laspes which caused Oscar and I trumatic lifestyls. Once they were established in me ?? 8mths it took.. I began a higher quaility of life. many I have seen ,MY uncle, Went off them s he failed the 6 mthly MMS PBS testing. He was doing quiet well on them. after he stopped he lost his life skills to dress or cope in normal life needs. and died within four years. Others in my support group “falied that PBS 6 mthly testings and we have watched them deterioate rappidly Oscar and I have lived and experienced both,those that were not on it and began through our intervention and those that believed it would not benift them. that accepted their Drs/ Neurologist advice after the MMS evalurations we saw the difference in their menatl failings…. MY friend FTD and ME more FTD symptons. “Aricept” has been our life raft . so have to disagree folks although I highly respect you both. Carol C.

    -raft.

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    • Hi Carol, not really anything to disagree with as we weren’t talking about the drugs that are here non. More about the value of whether someone needs to be diagnosed late in life, i.e. over 85 year olds, as our bodies deteriorate all over, including our brains – definitely not talking about people our age. You are so lucky you can take drugs that help as I cannot. Thanks for your sympathy wishes too… yes we are very sad, and a few cuddles and a hug would be great. With love and hope from your friend Kate xoxox

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  11. Hi Pete and Kate. Eh Pete so sad about your dad But also remembering my dad in his last Demetnia stages A relief for an ending of the illness gave some “peace” but the loss saddly “lives on with in us’ Our love to you and hopefull You are together now to share lots of healing cuddles toghether. 🙂 Carol adn Oscar.

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  12. David Spektor’s presentation in Auckland was for me a timely ‘refresher course’ in how to perceive death and in how death defines life. David, if you are reading this blog I’d like to thank you for that gift. I have no doubt that in formulating your presentation you had stepped well out side of the normal comfortable realm of a doctor and placed yourself and your own deep thoughts of death and dying front and centre. Extremely brave, sincere and respectful. As I watched my father’s decline over the last few years it has been all too easy to forget his unbelievable adventurous spirit. I shall remember now always him as a warrior riding into the sunset to meet my mother. Thank you.

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    • Thank you for your kind words Peter. It means a lot to me that my presentation could have such an impact. Especially at such a confronting and emotional time for you. I also appreciate you recognising the difficulty of bringing up such subject matter. It makes me yearn to keep going with my message about the importance of acknowledging one’s finiteness. As I stated in the presentation, I believe that one of the greatest gifts we have been given in life is the knowledge we are going to die. If we use that knowledge correctly then we can prepare for death and help people at the end of life die with dignity and quality.
      Thank you again and I hope to keep in touch with both you and Kate.

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  13. Hello, maybe we don’t need the label any time sooner or later. We really knowing nothing about it’s progress in any one human being. We can’t predict which of the many symptoms will even show themselves, in what order they will show up, and how intense they will become over X period of time. It’s the drug companies that need the diagnosis to promote and get paid for their all but useless pills. Richard

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    • You are right Richard, which might also why so many drug companies are pulling away from funding research into a into a cure for dementia… they cannot see one in the near future, and therefore there is nothing (no drugs to sell!!!) in it for them!

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