Sunday, 9 November 2014

Thought provoking day

We were invited to speak at the North East regional conference of the Samaritans yesterday, my wife as a carer and me talking about living well with dementia.

This was a very thought provoking day, because as a person with dementia, who at times sees my own problems with depression in dementia, mild though it may be, I realised just how difficult it is to carry on without the right support.
 As I have said before, many including the professionals, refuse to accept let alone talk about depression in dementia, and the first thing a doctor will do is, think of anti depressants, rather than look at the real cause behind it.
Hearing many stories today I realised that we walk a tight rope, and need to be very careful, and seek help when needed.
I know that many of our problems are caused by the fact that we are loosing control of many things in our lives, but many people simply do not understand this.

When we started today there was a presentation, which included all of the charities who link up with the Samaritans, but there was no mention of Parkinson's disease and no Alzheimer's Society involved, which really made me wonder.

Depression plays a big part of dementia, so where do we go for support, and what do we look out for.

Years ago the Alzheimer's Society used to have support groups for both carers and people with Dementia, but these were done away with in the re organisations, and left with dementia cafe's and singing for the brain. When what we really need at the time, is someone to sit and talk to face to face it needs be.
They also started up a group which was going to be called Dementia mentors, a service where a carer or person with the illness, could ring a number on a night and get support from someone else who has the illness or was caring for someone with the illness.

But this was then scraped before if could get off the ground.

This service was badly needed as you cannot always get good advise from Internet chat rooms, as many people think that we are all the same, with the same problems ans symptoms, something we know is rubbish these days, as there are well over 120 variations of this illness.

But a quiet chat over the telephone would work wonders for people at times, rather than being hung out to dry by charities and professionals  

This would have been an ideal group to support those in need, a friendly voice at the end of the telephone, so you could get answers to questions when the hospital clinics were closed.

I often wonder how many desperate people went on to ring the Samaritans because they got no response from anyone else. 

Yes many charities have call centres but these are largely people working from sheets of paper and ticking boxes, they do not live with the illness, or care for someone with the illness, a very big mistake, as they have no hands in experience.

One or two of us may be very lucky that we may live near to a hospital specialising in dementia, where we could get support at night if things go wrong, but not everyone has this in their local area.

The hospital near to us has dementia wards, which I gather are manned 24/7 so perhaps we are very lucky with this.

Graphic nightmares and hallucinations are one of the major concerns in dementia as many feel that they are going mad.

But how many doctors and consultants discuss this problem at the point if diagnosis, many people find out the hard way

So my advice to anyone who is struggling with depression through dementia etc, is to call the Samaritans which is manned 24/7 and get advise before it's too late. 

Remember your not alone with this illness, even if you have no family or friends around you. 


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