When someone has dementia, the person remains. However changed the behaviour, however different the person seems to be, the essence of the person remains. (Stokes[i] ) We see evidence of this in our care homes: others at national conferences share experiences which say the same. There are moments when the fog lifts, and the person reappears for a time. It happened with Frank, a few days before he died. (Dementia: Frank and Linda’s story). For a good half hour he was his old self with unique, droll humour. I couple of weeks ago an old Cambridge friend forwarded a text from one of his mother’s carers, saying, ‘When I read to her from the book, I saw Joan again.’ The book was Worshipping with Dementia, a set of simple devotions for tired minds – with or without dementia.
In conversation with one of our care home managers yesterday, she told me (among dozens of other things!) about Donald, who had been hospitalised for a physical reason but also had dementia. He wouldn’t eat, they were told. One of the home’s volunteer supporters went to see him and found that it was because the meal was placed in front of him but no-one gave Thanks. To him, giving Thanks was as normal as picking up a fork. This same home manager (I won’t give her name because she doesn’t like personal publicity) told of another resident, a former pastor, who ‘spontaneously’ took devotions in the evening. Which was fine, except he tended to repeat the message, so when one of the other residents heard him come full circle she would say a loud and firm ‘Amen’, and he took it as his cue to stop. There was also David (name changed), a retired vicar who appeared to have lost the ability to speak, but who would pray a cogent and meaningful prayer at prayer times. ‘You can’t tell me there is no God when I see this!’ said the manager. We’ve so many examples of this it would take a book to fill them.
The person remains, and when they have made Christ at the centre of their being He stays there. Whether they have dementia or not, the Holy Spirit never leaves them. When we arrive in Glory there will be accounts of how He comforted and ministered to His precious saints in ways we can never see or understand in this lifetime.
I was reminded of this today, reading an astonishing account of Martin Pistorius, a young man who suffered from locked in syndrome for eight years. He’d emerged from a long coma, and was aware of everything that people were saying to him and what was happening in the world (thanks to TV) but couldn’t communicate. He said, ‘Everyone was so used to me not being there that they didn’t notice when I began to be present again. The stark reality hit me that I was going to spend the rest of my life like that – totally alone. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.’
Then one of his therapists noticed his almost imperceptible smiles and nods, and arranged for him to have further tests. “‘Happiness surged through me. I was Muhammad Ali, John McEnroe, Fred Trueman. Crowds roared their approval as I took a lap of honour,’ Mr Pistorius said.”[ii]
Dementia can be like that, a very lonely place to be. Janet Jacob, one of our conference speakers and a former psychogeriatric nurse and home manager, remembers how dementia residents would stroke her arm or hold her hand, just to make contact.
Locked in syndrome is not the same as dementia. No-one really knows what’s happening in the mind of the dementia sufferer, but we do know that dementia isolates the person and they can feel deep loneliness. It’s worse when people stop visiting because they don’t get the response they would like. We know, too, that holding the real person in your mind and focusing on him or her and not the dementia not only reaches them but blesses them, too. Matthew 25:40 says that whatever we do that touches the ‘least’ of Jesus’ family, also touches Him.
You can see how one of our care homes cherishes people with dementia, here: https://www.youtube.com/watch?v=I1_K2D6oC08
[i] Challenging Behaviour in Dementia, p 54, Stokes,2014, Speechmark.
[ii] http://www.telegraph.co.uk/news/worldnews/africaandindianocean/southafrica/11348484/South-Africas-ghost-boy-tells-of-waking-from-coma-but-finding-himself-trapped.html
