There has been much talk over the election period of care for the elderly, and especially for those suffering from dementia. Most of the discussion has centred around the cost, discussing how we might fund our parent’s or partner’s care – but I think the true cost of dementia lies in the realm of relationships and quality of life, not money.
Over the last few months I have often been up to Hull to visit my parents. My father is 95 and suffers from dementia. He is paranoid too, and has spent the last two months in a secure psychiatric unit. The staff are caring – I find it hard to believe that anyone would choose this vocation, and fulfil it so cheerfully. There they are, day after day, always a smile, never discouraged. But all my Dad sees is a prison, a gulag with victims and warders. His paranoia prevents him from having any hope at all, and he is desperately unhappy. My Mum, bless her, has set her heart on bringing him home and caring for him herself. She is frail, 94 and nearly blind, so it seems very unlikely that she could manage this, even with my brother dropping in two or three times a day. Although any attempt will be fraught with problems, and will seriously reduce her quality of life, I think she might never forgive herself if she didn’t try. So what if she tries then realises it just isn’t possible? What then? Dad will be in the gulag again, and she will feel she has failed the man who has given her over 70 years of his love and life. There are no winners. Every outcome is heartbreak.
When my sister Esther was dying of cancer, some aspects of her personality were exaggerated, others were repressed, but she was always recognisably, and very clearly herself. I could see the disease, but it didn’t stop me seeing and loving Esther. But with dementia, the disease obscures the person; we wind up dealing with someone whom we don’t recognise, who doesn’t recognise us – the disease has taken over, and we feel as though the person we love has already died. Yet we cannot mourn – they are still there before our very eyes, but in body only. Some quirks of behaviour persist, and their character and personality shine through on odd rare occasions, as if to remind us of what we have already lost, and then are gone again, leaving us the stranger who hurts us unknowingly, as they never had before.
Yet I must believe that God can see through the disease, can see past it to recognise the soul that was ever there. If God sees our heart and knows us, then he must still see the tortured soul that is my father, behind the mask of disease, and love him. And this is love that hurts, love that grieves, love that perseveres though all seems lost. And how hard I find it to match that love, when I am always watchful for the next cruel word, the next bout of anger, or even the next expression of indifference. But that is the love we are all called to have, the love we should exercise each and every day. At the same time, that same love that God has for the father I struggle with, that love fills me with hope and encouragement. It shines like a beacon in a dark world.
Jon