Join the club

MARIE: There’s a certain type of people that, no matter how nice the individual, you really don’t want to get to know. I could have lived very happily indeed without ever having anyone present themselves at my door with the words, “hello, I’m Britta, your local dementia coordinator”. I knew she was coming, indeed I had called and asked her to come – not expecting anything concrete at this stage, just to make contact and find out how a dementia coordinator spends her days.

Britta turned out to be kind, engaged, knowledgeable and very pleasant. And contrary to my expectations, it turned out she did have something concrete to offer both Jon and me. She invited Jon to come and visit a house she runs – not, she stressed, a day centre or a social club, but a home away from home, where each day 8-10 people with varying degrees of various types of dementia spend some hours doing normal things like cooking and gardening and going for walks and having fags in the tool shed. The aim is to help the afflicted person by giving them something useful and pleasant to do in an atmosphere conducive to maintaining function for a long as possible, and to help the carers by providing us a breathing space. If Jon likes it, he could start going once a week.

For me, Britta offered a series of meetings for carers of people with early-onset dementia. It surprised me how eagerly I accepted the invitation, almost tearfully grateful that there’s a place I can go to talk to other carers who know what it’s like. That threw me. I realized that although we have told friends and family, and although their reactions have been loving and considerate, it’s not like telling people about Parkinson’s. PD may be poorly understood by those not affected by the disease, but once you explain, most people do begin to understand and imagine what life with PD is like.

Not so dementia. Life with the big, ugly D is such a taboo subject, such a frightening prospect for everyone we know. I get the feeling many people are afraid even to imagine it – do they subconciously fear to become infected by the mere thought? I can’t even talk about it to Jon, because he prefers to pretend it’s not there, and who can blame him? It threw me for the rest of the day. I had much to do, but nothing got done because I was floored by discovering this need in me to meet others living next to dementia.

I’ve just been to my first meeting and it was utterly brilliant, as good an experience as the first time we went to a Parkinson’s event. There was quite an interesting talk about support available from the local authority, but that was almost by the by. The marvelous thing was to be surrounded by people who know and understand, who don’t judge how you handle it, but who are keen to share their experiences – it lifts the heart and makes the whole bloody thing quite a lot easier to bear. I shall definitely become a regular.