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"... from being a capable adult, you got a diagnosis of dementia and suddenly you were written off. You couldn't do things for yourself anymore. I think I was programmed to accept that, but then I began to rebel and think: I can still do things for myself, I can still give back to society."
James
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What are the activities that you have pursued in your life?
Peter - When I was younger? None at all really, I was too busy working all the time.
I found when the grandchildren arrived that I was a complete novice. I had no experience of dealing with small children at all. I had never changed a nappy, never bathed a child, and because of family circumstances I had to get into that- and I loved it, I absolutely loved it.
In later life? I've never really had a hobby, I've never had time for one.
I love history, I'm very interested in history; particularly the change over from the Neolithic period into the Bronze Age, because that's about when nations were starting to emerge. And at the moment I'm reading two books: Tom Devine, and it's a Modern History of Scotland. And I can't remember the name of the other one but it's tracing Scots through DNA and showing that we're all, we're related to everybody in the world really.
What are the important relationships in your life now?
Henry - An important relationship is obviously my wife. If you are married 36 years to a person you both know each other inside out. She knows if there is something troubling me and she'll help me with that.
My family; I'm very close to my family. We still go to the pictures; my son and my two daughters. Normally a Saturday or even during the week and it gets me out, and gets me doing something. That's how close we are.
In fact, this year on the 16th August, my daughter gets married. And, we've got everything organised. We've done it so far in advance. We have got everything in place. I said to my wife 'we need to get this sorted out now'. And she said, 'well that's fine, that's what we'll do'. So we've done it. Which I'm pleased about, because we're not going to be running about, well hopefully we're not going to be running about at the last minute, because it's already done.
How important is it to you to maintain your interests?
Henry - If I didn't have these things, it wouldn't be worth living. I've got to keep my mind active. That's what I'm trying to do each day. Sometimes I can push myself a bit far, but hopefully it's keeping my brain ticking over. I know what I'm doing. Until something happens then I've got people I can rely on.
What are the important relationships in the life of the person with dementia you care for?
Caroline - The important relationships in my mum's life have changed quite dramatically since we lost my dad, because she saw my dad every day. But I visit my mum every day. I've visited every day since things happened and life changed.
I can't honestly say that she has any friendships in the real sense of the word. There are 29 other residents in the care home where she is but I can't say hand in heart that she has any friendships. The friends that she had live about ten miles away and she doesn't see them. And I understand the reasons why- I'm not criticising- because life's busy. But essentially it's her family- my sister and I visit. My children as I say were always involved in my parents' lives on a day to day basis. We went up to see her last night for mother's day and that spark is still there with her grandchildren. So, in terms of relationships, it's shrunk big time.
What are the activities and interests of the person with dementia you care for?
Caroline - My own career is in person centred planning and I have done a lot of person centred work with my mum. One of the areas that we look at is her contribution. My mum lives in a care home now, she has done for six and a half years. Community connections have disappeared. My background is in learning disability, where part of my role was supporting people out of big institutional care, like Lennox Castle. And my life turned right round and my dad actually was diagnosed with vascular dementia in 2006 so both of my parents lived in the same care home- and the person centred stuff threw a whole load of stuff up for me personally in relation to care homes and the work that can be done.
Often the resistance that is found with care homes is because they are very much a health model. And with the government's proposal to link health and social care; to my mind it's not rocket science. A lot of this stuff can be done very simply but it's complicated, by attitudes.
So my mum's involvement before she moved away from home; if I had known then what I know now, she would absolutely not have gone into care as quickly because she had very strong connections with her local community, with her friends, with the church, with her family. Now her community needs to be taken to her, and it's very minimal.
My dad sadly died in November. He struggled in many ways because he lived downstairs in this care home. My mum stayed upstairs. So he still saw his wife every day, but there were no connections left with their community- which is less than half a mile away.
She is the most beautiful human being in my life. I know that everybody else might think the same about their mother but the dignity that she has maintained throughout her own experience having left home, having left everything that's familiar to her- and did it because people said she should- and to still be the person she is and to be touching other people's lives. It's crucially important. It's a human right. It's about her dignity. So I would do anything to make sure that was maintained in her and for other people as well.
What are your expectations of social workers and others in supporting you to maintain the community connectedness and relationships of the person you care for?
Caroline - I'm going back to seven years ago when my experience wasn't the best, and again I'm not judging, but I think you need to know and understand.
One of the biggest things I've learned is you have to listen to families. Rather than telling families. Rather than ticking boxes and assessing people, to death almost. Really listen. Because often carers and families don't know what the next step is- so awareness raising, having a real understanding of what Alzheimers and dementia is. And there's loads of information and support now that wasn't around even a few years ago.
So don't make assumptions, don't judge people, don't tell people what you think is the best thing for them. Spend time and get to know folks, because it's a hellish journey for families.
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"It's easy. Listen to hear and hear to see. That's the formula you need that gives you enlightenment."
Lorna
"Mum did a lot of charity work, she was well known and was a child minder... mum needs to be connected to society, it's so important, the interface with different people when we go out."
Lorna
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