I did a dementia friends awareness session yesterday. Delivered? Facilitated? Taught?
Anyway, we had eight lovely people, including two young men which was great, and we had a wonderful discussion of dementia and living with it, either as a carer or with dementia.
It’s interesting how sessions go with the flow of the people attending. We start the same way, introductions, what it’s all about, David Cameron’s dementia challenge, funding, etc, and then do the bingo. But then I start the explanations around each of the statements about dementia, and we begin to meander. (One of my favourite words.) They ask about situations, from their own experience, loved ones, parents, uncles, alive or dead now… What if? What should I say? What should we do?
I try not to provide specific answers…I’m not an expert, not a counsellor, not a doctor…but I give examples I have read about or that have happened to my family, or me. My brother in law thirty years ago, who sat at the dinner table and did not know how to use the knife and fork, but once helped to get started ate his way through the whole plate. My father in law, who forgot his wife had died after twenty seconds, and grieved again every time we told him. Which we shouldn’t have done because he wouldn’t have remembered if we had said she had gone to the shop. And it would have been a whole lot kinder.
That’s something that haunts me now. Should have known better, but hadn’t done the friends awareness!
The biggest discussion issue was about risk. And control. For the carer.
Should I let him go out for a walk? He might get lost.
Should we let him work with the cows? He has forgotten how to be safe with them?
Should I let her use a sharp knife in the kitchen? She might cut herself…
Well, my answer is just assess the risk and decide whether it is too high. Is it what we all put ourselves through anyway in our everyday lives? Like using a sharp knife to cook.
Would a cut really be that terrible?
Could I let neighbours and local shops know that if they see my husband wandering around it’s ok, but just ask him if he needs help, or a lift home. Has he got a note in his pocket of his home telephone number?
Get him a mobile home with an app for locating him, or to allow him to make emergency calls home (note… home, not 999).
My overriding message is…
Allow me to do what I want as long as I will not do harm to anyone else, and as long as I am not putting myself at stupid and really serious risk (like driving the wrong way up the M6). I want to live in my community. I want to meet people, wander around, go places, cook (good and bad meals), make tea (with or without tea leaves)…
Let me live my life. I just have a disease (well several actually, but you don’t stop me walking three miles in case I have heart attack).