This week I was confronted again by well-meaning individuals who feel that it is our job to “manage” people living with dementia. This usually includes medicine, keeping them away from other people for fear of offending, or if all else fails locking them up. When we only see behaviour as symptoms, we lose sight of the person.
Somehow, this does not seem to be a concern to many people. They quite happily stop seeing the person and only see the behaviour, labelling it as “acting out”, “aggression”, etc.
I have run out of ways to try and convince these people of the damage that they do. I simply cannot find ways to argue my point any more. In fact, at the best of times, I want to weep or take to their heads with a baseball bat. Usually the latter… And I am tired of ranting and raving like a madman about it. Just tired, and sad. “We are all on our way there” is one of my favourite phrases. And “there, but for the grace of God, go you and me”. I want to have that tattooed on my forehead. Scream it at the top of my voice. But no, I must be adult, sensible, tactful, and kind. I am sick and tired of that. I want a revolution. I want every doctor to first take the cocktail of drugs that (s)he prescribes him/herself, and see how it makes him/her feel. And be locked up, or tied to a bed, in a “frail care” for week after week. Especially on a Sunday afternoon.
Social isolation and loneliness are so much part of the problem. The more we marginalise or institutionalise people, the more they will become disconnected. Spending time in Hangberg (a small village above the harbour in Hout Bay) I see what can happen when older people are part of a community, when they have a purpose, when they are active participants who have agency. They do not buy into the de cit discourse, they are stronger and healthier, more active, and they have an opinion, a voice. Tom Kitwood said, “personhood is the status that is bestowed upon a person by others. It implies respect, recognition, trust”. I am astounded by how often I hear the words “respect” and “trust” in this community. Have we become too “sophisticated” for these values?
Bill Thomas (The Eden Alternative” said that older people are our teachers and that they teach us about patience, tolerance, and forgiveness. Where else do we learn these values? They are not inherently part of us, we must see them, feel them, hear them to learn them. And God knows, we do not see it on the streets, in our parliaments, or in the media. There is very little sacred in any of those. We learn it from people who have lived their lives. And as much as we might look down on the “poor”, the marginalised, the “illiterate”, I am learning more and more from their authenticity. Their deep belief in their God and a knowing that the universe is on their side. I look into the eyes of an older “coloured” woman who has most probably never sat down next to a “white” man, and I know that she is my teacher. That her wisdom, her lifelong suffering, her gratitude for her life I can never understand. I feel it in her touching my arm, in her toothless laugh, in the wrinkles of years’ and years’ exposure to the sun.
The fisherman who tells me of the life of chokka fishing, being out at sea for weeks on end without sleeping. Of hard drinking and drug taking, hands like the bark of a cork tree, skin like old leather, living in the now. With almost no material possessions, a house that is still not in their name since they set off their farms in Constantia in 1950 when the Group Areas Act was legislated. There is not a hint of anger, resentment or even regret. Here we are, today, in Hangberg. Grateful. Kind. Generous. And a wicked sense of humour. People age well, even though they might not live as long, they age well. They are alive, active, and participating. They feel that they belong because they do!
A long life is not what we should aspire to. We should aspire to a life of being connected, of staying close to family, of being kind. I somehow cannot emphasise this enough. Be kind – to yourself, to your family, your friends. They are the people who will be there when you can no longer be on your own – or not! They are the ones who will ll your parlour with laughter, who will visit and spend time with you. They are the ones who will help you be Mindful. For when you start to disconnect from family and friends you will start to disconnect from Life.