If you talk to others it knocks you off.

There have been many conversations at the Buddy Café in Salford, discussing the dementia that ‘service users’ and carers deal with everyday. Dementia is a curious, elusive thing. It doesn’t come tattooed on the forehead – as someone said to Lois. It hides and attitudes towards it are often filtered through many disguises.

Several weeks ago, we asked people in the Buddy Café to tell us their motto for life. The resulting statements were made into tattoo designs by Lois, incorporating the artwork and words of participants. This session was the unveiling of the designs, which people at the café were invited to wear. The tattoos were also prompts to ask how people feel they are looked at by society – and how they’d wish to be treated. What follows are a series of these mini-interviews, discussing attitudes to dementia and illness generally – what helps and what hinders.

“Take me out for a walk, the long walk. Just leave me to sort myself out. If they start mothering me, I do worse. A walk clears my head when it’s hectic. Frees up my head. Don’t keep mothering me, it makes me more confused. Slowly, rather than dashing about, helps me sort it out.” (Ray)

 “Need somebody to be there, to be there everyday. It’s all you need. Somebody you can talk to. Don’t want them feeling sorry for me. I was always there for them, because I loved them. All that chaos in hospital, caring for someone makes you stronger. Now I don’t like to ask too much.” (Isobel)

“Dementia – had to deal with it with my mum and dad. At first it’s a shock and then you get used to it. Might sound awful, but I sometimes saw the funny side. My mother did too. When she got confused, we’d talk about it together. Then on the odd occasion she’d say things that put a shiver down my spine.” (Chris, Salford Council)

“It’s just what it is. Nothing about it.” (Vera)

“Dementia? THEY can’t realise it, can’t let it go in their own head. YOU can’t write it. Other people must have the same respection for me. If you’ve no friends you’ve had it. You’ve got to think about your own body too. Then it’s gone. Don’t smoke, don’t have any men and don’t drink, except for a shandy now and again. When I’m going strong, take a garden walk. You’ve got to have some freedom.” (Alice)

Alice dancing

“I just carry on ordinary as if there’s nothing wrong. If you talk to others it knocks you off. Talking helps. If you don’t feel well and you’re on your own, you start feeling sorry for yourself.” (Sue)

“Just be there, reassure me. The right support helps, helps a lot. But sometimes it’s the wrong support. Just after my wife died I was walking to church talking to someone and a girl on the door overheard and tried to help. At that time I didn’t need or want that help and I gave her a mouthful. Timing is everything, as with a joke. And knowing when people can do with a boost… My daughter’s helping me now I’m getting diagnosed. We brought her up and now she’s reciprocating. Being there for me.” (Dave)

Dave

“People try to avoid someone with dementia, because it’s difficult to have a conversation. A normal conversation. Some try to avoid them rather than speak. I think they haven’t got the patience. I’m different, I was a nurse and also I went through it all with my dad. A lot of people think someone with dementia is a nuisance. They repeat things, it’s frustrating. But that is normal to them. Someone here asked me the same question five times this morning…” (Vera, carer)

Betty

“If I’m ill I’d like to be treated with respect, people asking me what I need. Trouble is I never have any time to be poorly now I’m a carer. Even when I’m in a crowd I feel lonely. Why is that? You can’t answer that, can you? I used to be the life and soul, enjoying life and now it’s come to a standstill. I could tackle anything at one time but now I can’t. When you get older you’ve not the strength. Once, I could join in with the best.” (Betty, carer)