Dementia; The Human Cost
Studying the development of this disorder has made me revisit my experiences of it
A husband and wife have been very much in love for nearly 65 years. But now, she believes he is having an affair.
He isn’t. He is the most devoted, loving and caring man you’d ever hope to meet. He’s also nearly ninety, largely immobile and almost blind. But suspicion gnaws away at her. She becomes paranoid, unpleasant, cruel. It reaches a climax where she screams at her neighbour from the upstairs window, declaring adultery. The neighbour is shocked. This is a woman who used to dry her underwear over the stove rather than let the street see.
This is the final stages, filled with bitterness, confusion, sadness and fear. The odd moment of clarity makes her husband and daughter sob at what used to be. This isn’t simply an elderly woman with no filter, but a different personality. A different wife. A different mother. Who is slowly dying in a body they used to know.
Occasionally, she’d glimpse at moments of what used to be. A squeeze of a hand, a memory, an apology at what she had just done. So many tears, so much distress. I remember as a child thinking that an evil fairy had stolen great auntie’s body. It was like some impossible curse.
When she died, at last, at the end of the long disease, there was a long silence, and bittersweet relief. No one had got to say goodbye to the loving mother who kissed the back of small hands, the wife whose strength had pulled through many years, the elderly witch with a cunning gleam in her eye as she told you Hansel and Gretel. Only an exhausted, paranoid and bitter small body, wrapped in hospital green.
I don’t remember much else. Only my mother turning to my father and saying in a low voice that evening
Don’t ever let me live like that
In the way that adults do to eachother when little ears aren’t listening, with a long soft stare.
I’m a lot older now, sitting through lectures on receptors and neurons and biochemical release systems. But for me, dementia will never be a disease about cells or synapses.
This is very much a disease that infects relationships, love, friends, family, trust, respect. When someone confesses to me how hard they find visiting their ill relative or even engaging with the situation, I don’t think they are selfish or wicked. In a way, a disease can give you your own disease, in the form of stress, anxiety, sadness and depression.
What you are feeling is a sort of liminal bereavement, the slow passing of someone you used to know, and haven’t yet had the time or resources to reflect on that. There is no funeral or memorial for the living. That time to dress up, come together and acknowledge the deceased is a fundamental across human culture. Having to watch almost two deaths, one of a person’s independence and personality, and one of their body, is distressing.
We need, as a society, to care not just for the patients of dementia, but for their families and loved ones. This is one disease that you often don’t get the time to say goodbye on.