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"Without my wife I would flounder. She supports me with everything I need."
James
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Who are the people you consider to be carers in your life and how do they support you?
Henry - In my case, I actually was thinking of suicide. Because I felt I'd be no use to anybody and I didn't want people to be looking after me. That was a decision my wife took on board and she helped me. She talked to me and she said that she'd look after me. After all I've been married for 36 years, and she's my rock. She's my tower of strength. And she stopped me from actually doing that.
My wife, because I'm an insulin diabetic, my wife makes sure I take my insulin and I take my tablets, because I've got high blood pressure. She looks after that for me. Also, I can't put my socks and shoes on myself so my wife has to do that for me. That's another way. Dressing; she makes sure that I'm washed and shaved. I do that myself, but she makes sure I get it done.
My son drives me to places, which is great, because I used to drive them. Since I've got dementia, I gave up my license voluntarily. They didn't ask for my license but I felt 'this could be dangerous' and rather than the thought of maybe knocking somebody down I just said no, so I haven't got a driving license now. So I'm relying on my family quite heavily. But in saying that, they're happy. They said they wouldn't do it for anybody else but they say 'I'm doing it for you because you're my dad'.
Agnes - My friend was wonderful with me and I don't think I'd be here today if she had not supported me right through that very important crisis point. But she didn't last the pace, and I don't know why- it's not a blame game. But then I looked at it and you know dementia is quite hard on friendships, and people. We can be quite trying. Needy. And difficult. Although I think that other people are like that too but anyway, it seems to be we're more so.
Peter - My wife. My brother. My nephew. They're the main ones but there are others. Like, my brother's daughter in law and my niece and her husband. These are people who from time to time I've had to phone- I don't drive anymore- and they come and get me, and even if they are a bit grumpy about it they still turn up so you feel quite safe with them. It's the security of knowing that there are people there who will turn up without question and help without question, and keeps me out of a care home.
From time to time, not so much now that the better weather is coming in, but if I have to be somewhere at nine thirty in the morning: I often go to sleep in the afternoon so, I might get out of bed and turn up there at nine thirty at night.
So, everything I have to do for weeks or months if I have notification of it, my wife will know or my brother will know, and for example if I have a doctor's appointment at nine thirty in the morning I'll be phoned the night before and told- 'remember you have a doctor's appointment, I will phone you in the morning, write it on your board'. I have a white board up in my living room and I write it on the board. In the morning I'll be phoned again in good time- 'what are you wearing?' -and I've to tell them what I'm wearing because I once went to a doctor's appointment with a pyjama top on and a cardigan over the top of it- which I thought was alright, you know. I was better dressed than some of the people in the place. When I'm meant to be in the doctor's they'll phone me about ten minutes before- 'where are you?' - and I'll say 'I'm in the doctor's' (mobile phones are great). 'That's right you're ok you're in the doctors that's fine'. They follow through on things, and make sure I don't get lost.
How important is carer support in helping you to have a good quality of life?
Eileen - One of the things that would have made it a lot easier for me is - and I shouldn't say social work because it's not fair because they've just been tackled with having to deal with people. The professionals at the start, should have... We all know now apparently that keeping somebody in their own home for as long as possible with dementia... you know, that's been known for a while. But also what should be alongside that is seeing how carers could be supported, for example by being able to continue to work and by keeping the person in their own home.
I know it's bandied around that carers are key partners in care, but we're not paid to be partners. I haven't had a training course. I know what a partnership means, but if they're going to start labelling us with that we need proper training.
And again it's all down to accountability and expectations.
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"I know what a partnership means, but if they're going to start labelling us with that we need proper training. And again it's all down to accountability and expectations."
Eileen
"I have the right to have carers who are well supported and educated about dementia."
Standards of Care for Dementia in Scotland, 2011
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