No photos, just something I would like you to read

My posts, will from time to time wander away from a garden theme.  Today is one of those.

A death or a tragedy causes family and friends to rally around with condolences and support.  The early onset of dementia leaves people silent.

My ex-husband, aged 59, has early dementia.

He walked out of his job in June 2010 and his moods, which followed, were put down to depression.  It later transpired that his work colleagues had noticed a change in him but they all thought it was not their place to say anything.  By August 2010 something was far from right and he finally visited his G.P. who referred him to a consultant.

Drawing comparing how a brain of an Alzheimer ...
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Rapidly an intelligent, athletic, calm and happy man became a different person with bouts of erratic behaviour, flying into violent rages, forgetting how to make toast and now he can’t even remember what his socks are for.  The consultants are perplexed over the type of dementia, and seem to change their diagnosis with every test.  There are several types of dementia including Frontotemperal Dementia (FTD) and Alzheimer’s Disease being the most common in the over 65s.

The number of young people, (under 60), diagnosed in the UK with early dementia is under 20,000.  Because of its rarity there is very little support; in many cases the minimum age to have access to dementia services is 65.

He and his wife were planning to retire this year and the money saved for their retirement plans will now be spent on his care.  Daughter #2 is getting married in July, and she has the sadness of her father, possibly, not walking her down the aisle. Some might think that this loss of a person is crueller than death.  The man we all knew and loved has gone – he is not yet 60.

Logo of Alzheimer's Society.
Image via Wikipedia

A recent poll by the Alzheimer’s Society shows we fear dementia more than cancer and even death.  According to the Alzheimer’s Research 2010 Report £590 million is spent on cancer research each year, while just £50 million is invested in dementia research.  For every six cancer researchers there is only one dementia researcher.

 I feel desperately sad for the young, tall, handsome man I met in my early 20s.  We were divorced over 18 years ago, there is little I can do but be there for my girls.  What I can do is bring dementia to everyone’s attention and the desperate need for research.  Dementia has been neglected for too long.

Postscript :  since writing this post, it has now been discovered that he doesn’t suffer from Alzheimer’s at all, but Encephalitis.  There is now a long drawn out and expensive road of treatment ahead.  He could come back to us, but the chances are slimmer now than they would have been had this been diagnosed within the first three months of his illness.   How many other middle aged men have been mis-diagnosed with early Dementia when, in fact, it is Encephalitis?

9 thoughts on “No photos, just something I would like you to read

  1. My Dad’s second wife passed away a few months ago. She had Alzheimer’s. You are right, it is the most feared of all the diseases of aging.

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  2. Your post is on a subject close to my heart as my 83 year old father was diagnosed with vascular dementia in November 2009. Since a fall resulting in a broken hip in May last year he has deteriorated at a rapid rate and is currently in respite care at a nursing home. It is a most heartbreaking condition but even more so when it strikes such a relatively young person. I do hope that he is able to walk your daughter up the aisle on her special day and that more money/resources are devoted into research.

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    1. I am waiting in the wings as substitute but as they say there is humour in the darkness and I may have to change my “killer heels” – we have visions of going over on my ankle whilst walking down the aisle. Seriously, it is a dreadful thing to strike anyone and especially so when still relatively young with what should be another 30 years of life ahead.

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  3. You are so right, dementia is a great taboo still in our society, all the more so when it happens to someone so young. I can’t imagine how awful it is to watch someone you know gradually disappear. I hope that all those close to him, as well as he himself, get some good care and support. Posts like this, along with the work by people like Terry Pratchett and John Suchet, can only help raise awareness and then hopefully the standard of care. I hope you find the strength you need to support your daughters through this nightmare.

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  4. Sorry to hear the ex hubby is suffering with dementia – far too young for that.
    My Dad developed it early 80’s and that was too soon for us.
    Hope someone will help him and find an uncle/father figure to walk your daughter down the aisle – poor Vicky – not a good thing to deal with at all.
    Love Jennifer xxxx

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  5. Thank you Helen. What has frightened everyone so much is the rapid decline. I will pass the link on to his wife – they live in Manchester. The Alzheimer’s Society has also been a great support, they have confirmed spending a lot of time with him that he is not suffering from true Alzheimers. It is getting the diagnosis and medication right. The Alzheimer’s drugs sent him off the planet.

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  6. Dementia is awful. We have the Association of Dementia Studies based where I work I have met some truely inspiring people. One is a gentleman in a similar position to your ex-husband who has fought his illness and still manages to campaign for funding to research dementia. The other is John Suchet, the newreader whose wife has dementia and he has written very movingly about it. There is an organisation, a bit like McMillan Nurses, which is designed to help the family of dementia sufferers. It isnt wide spread and this is one of the things John is campaigning for – if there is one near your ex they would be able to provide his family with huge support – Admiral Nursing http://www.dementiauk.org/what-we-do/admiral-nurses

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