Facing the inevitable decline of dementia

FuneralLiliesOn Monday the husband of another friend who had been diagnosed with younger onset dementia was buried. Of course, this has been part of the reason I have fudged a few blogs this week… We found out he had died on the last day of the Alzheimer’s Australia 15th national conference last Friday, and it was a hard gig attending his funeral, very sad for his family and friends, and extremely confronting for us.

The death of everyone we love is difficult to deal with, but when the death is from the illness we have also been diagnosed with, it is much closer to the bone. It confronts us, makes us realise ‘it [dementia] will get us in the end’, as one well-meaning registered nurse reminded me a couple of years ago. I’ve been to many funerals in my lifetime, including the funeral of a man I loved who took his own life almost 28 years ago.

My mother’s family saw funerals as ‘opportunities’ to farewell someone well, with open coffins at the Church for everyone who wished to view the body of the deceased. Tears flowed, but so did the love and joy of having known the person. My great gran suggested we cry at weddings – because that is when your real troubles start, and should celebrate and be happy at funerals – because that is when your troubles are over, and because she was deeply religious, you were going back to your maker.

It always amazes me how much we learn about the deceased, a person who we thought we knew well. In Tuesdays with Morrie, they have a living funeral before Morrie dies, so he can get to hear and enjoy the accolades from his family and friends, usually left until the person dies. The death of a loved one is always sad, and the funeral is usually traumatic. It takes something from you, but it also gives you something back. Perhaps an inner strength, or the advantage of another traumatic experience, but one that changes your heart in some way.

But facing up to the inevitable decline of dementia is extremely difficult. Entering a nursing home, passing by the door of the secure memory unit (jail) is confronting every single time we have to do it. Visiting friends with dementia, who have declined more than you have, and then attending the funeral of someone with dementia is difficult to do. Attending support groups for PWD and their loved ones is not supportive (at least for me); they simply reinforce what is ahead as no-one gets better.

Life is like that, with or without dementia, and we live until we die.

5 thoughts on “Facing the inevitable decline of dementia

  1. So true Kate. I joined an on-line support group when my dad regressed deeper and deeper into the haze of Alzheimers… The patient does not need the support group – the caregivers do! The fear of the known is dreadful. I commented on an earlier post of yours (I got so carried away that I forgot it was your blog – The TED one…) that Vic opted for palliative sedation. The knowledge of her body dying was too much to bear for her. Saying goodbyes that had been said before… Lots of hugs xxx

  2. Don’t loose sight of the fact we are entering a new world Kate where medicine will be very different and healing will be welcomed not frowned up. If you have to have this dread disease, you are lucky to have it in this new age. Change is happening everyday…we can’t always see it, but it is. Just keep that mind open to all new possibilities….You’re time is coming for healing….Blessing and happy weekend..VK

  3. I’m so sorry for your loss and for how uncomfortable your feelings are. I heard an interesting remark at a Medical Humanities conference recently. Apparently a person with dementia later on in the illness noticed that they were “beginning to care less” and wonder “why were others so concerned about him?”

    One of the presenters is also studying the concept of “flow” in people with dementia when they are involved in a meaningful activity. The presenter thinks the human race can learn from people with dementia how to lead a more meaningful life, She says she knows lots of cases where people with dementia are

    I hope this helps a wee bit.

  4. yes, I bet, I hope it spurs you to keep living well, loving more deeply and laughing more often. unfortunately you both (all) are facing fears & your own mortality sooner than the rest of us, we all go along hoping it is something we never have to face.. love you

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