Dementia and the downhill slide

downhill slideThe last two weeks we have faced the deaths of two friends, both with younger onset dementia although my dear friend Michael had so many other serious illnesses, thankfully it was right down at the bottom of the ladder of his life. However, for the last few days we have been waiting on the phone call to tell us the wife of another friend with YOD will  have passed as she is in the final stages now too. They say it comes in threes…

I have a blog follower and global friend in Sydney who as made the comment it is too difficult to attend support groups because of the fact we all end up deteriorating and dying, and the emotional toll is just too great. My husband and I agree, and have almost completely stopped attending them for some time. It is confronting, and then just plain sad seeing people you have learnt to love deteriorate, right in front of your eyes, all the time.

It is a downhill slide. No-one ever gets better, ever. We regularly face the ‘but you don’t have dementia’ feedback, but sadly, we don’t get better. There is no cure, and of the approximately 100 causes of dementia, only one type of dementia (Alzheimer’s disease) has any treatment, and this is not a cure either. Last year when we were in New Zealand, a lady called Dotty died, the mother of Bob De Marco, the author and founder of The Alzheimer’s Reading Room. I did not know this lady, other than through Bob’s blog, but cried myself to sleep that night.

I follow many other blogs written by people with dementia now, and realise I consider them ‘friends’, and the emotional toll will be high when I learn of someone’s deterioration or death. But as a support group, for me, it is an easier way to connect and share, nowhere near as confronting as sitting in a room together. I have had the great pleasure of meeting Richard Taylor, and his recent fight against cancer also affected me, as it should, because I consider him a kindred spirit and very special friend.

We are in it together, and hopefully sharing with others on the same train can be comfort some of the time. I do know that many of the partners or carers find great comfort spending time together when the time comes…

5 thoughts on “Dementia and the downhill slide

  1. Dear Kate, I am so sad for the loss of your friends. I am so sorry you are going through this. I wish I had a cure – words of comfort. I don’t. All I can offer is hugs and love over cyberspace. Sometimes we know too much…. When my Dad was diagnosed with AD I did a lot of research. Have you looked at the use of cannabis to slow down the progress? There is a lot of positive results and scientific studies on this. http://www.ncbi.nlm.nih.gov/pubmed/17140265 Just do a Google search on Cannabis + Alzheimers. Hugs dear Kate.

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