Dead and alive: the awful paradox of dementia
Rebecca de Saintonge, 18th Apr 2016 3 comments
It’s a journey into oblivion: nursing a loved one through years of illness often means losing yourself along the way. How do you survive?
Dementia – your partner is dying inside their body. The person you loved, still love deeply, is disintegrating in your arms. They are alive, but they are dead. But not quite. Every now and then a vestige of them returns, like the moon reappearing for a moment from behind the clouds, only to be overwhelmed once more by the night.
But you don’t know whether to be pleased, or to howl with grief. This reminder of what you have lost is too painful.
As your partner dies, you die
Long-term illness, whatever its cause, puts a burden on the ‘carer’ (hateful expression) that few outsiders understand. The struggle for personal survival. After years of caring you can lose all sense of self. It’s almost as if you have disappeared.
The truth is, as your partner dies, you die. As their world grows smaller and smaller, your world grows smaller and smaller. Everything you are becomes subsumed into the daily task of seeing to their needs – physical, emotional, spiritual. In the end there is little energy left for anything else. And underlying all of this is a grief you cannot share with the one person with whom you shared so much.
Your relationship dies too. Or rather it changes into something quite different – still committed, still loving, but the price of that love for both of you is no longer laughter, but pain. Where you were connected, you are now disconnected. It is heartbreaking.
A sheet of glass
And in the end, sometimes, the only way to survive the daily grief of seeing your dear one suffer so much, is to try to put a sheet of glass between them and you, so you see their needs, and take care of them, but don’t feel so deeply. To feel that deeply hour by hour, day be day, is to be destroyed. You find yourself acting like a machine: washing, cleaning, cooking, touching, talking, laughing, affecting a buoyancy you don’t have to try to keep their spirits light – all on autopilot.
And so you too, become a paradox. You are a wife, but not quite a wife. You fight to keep your lover alive, and yet have to learn to let them go. You want your love to be endless, but you want to run away and never again be asked to care. You want to die to self, yet you long to live again.
The long and painful journey
When I was first told my husband Jack had Lewy Body Dementia, and that his mind and body would slowly disintegrate, I felt as if I’d been blown up inside, and only my skin was holding me together. But I was determined we would see his illness as a journey we took together. I had no idea what the next few years would demand.
After the publication of my memoir ‘One Yellow Door’ I was surprised by the many letters, emails and phone calls I had from people who had been in a similar situation. Some felt they would never recover, or that no one really understood. Others found their traditional faith simply didn’t make sense in the face of all they had seen of suffering.
A safe place to talk
That’s why I’ve set up this website – as a place where people can express feelings that it may not have been possible to talk about before, and share them with others who will understand. A place of mutual support. Please join in. Use a pseudonym if that feels more comfortable, but do feel free to contribute.