One of the missing focuses from my Blog so far could have been entitled: What About Me? There are lots of micro and macro issues concerned with trying to develop a life with dementia: but there are two people involved in this marriage. If the D word is not to take over lives then there needs to be a focus on the Primary Care: yes me Paul Collins.
I have had some challenges in my life but this takes the biscuit. As an active trade unionist, representing employees in various settings, I would have called time on this deal long ago. In many ways this is plain exploitation under the Marriage Licence with an Endless Hours Contract There is lots of literature on how caring shortens and destroys lives: it like a vampire sucking blood out of its victims.
An article in Alz Live today sums up the struggles associated with being a Primary Carer. Now I have made progress on shoring up the home base, I need to focus my own needs. I have to find time in my life to be a: father, son, brother and friend, alongside my caring role..
Dementia: Sharing The Good Times 
You’re so right Paul. It makes me chuckle wryly sometimes because I have a friend who became partially paralysed following a cycling accident. He had an incomplete fracture of C3. I would say now that he has a very similar level of physical disability to my husband, although he is actually able to do far more for himself in many ways because he doesn’t have dementia.
He doesn’t have a partner and he lives in an LA adapted bungalow. He has a full time live in carer provided by Social Services. They are allowed 3 hours a day when they can go out if they wish, and they just do the basics of toileting (he has a catheter), cleaning, assistance with dressing and cooking. Most of the time they spend in their bedroom. Every two weeks they change round and the one not working has two weeks on full pay.
Whoever negotiated our contracts should be shot.
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I recall suggesting on Talking Point the Alzheimer’s Society that there needs to be a trade union for carers. It may be a Labour of Love for lots of us but we get a very poor deal. One of the things that really puzzles me in this part of the UK is Social Services seem pretty vague about the deal on offer to carers. To say it is all shrouded in mystery would be an understatement. I have to probe a little more: ex shop stewards never die they just go grey.
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