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Published on: May 22, 2012
by Nicola Clark for The Guardian:
People with dementia can benefit hugely from regular contact with loved ones, as my mum’s experience showed me.
When you lose someone you love to dementia, the loss can sometimes be viewed as a blessed relief. That wasn’t my experience. However long or painful the goodbye is to witness, the pain of your loss stops your own heart for a while. I don’t personally subscribe to the notion of a league table of grief or loss, but I do subscribe to the belief that dementia is an illness that cuts through the dignity and strength of the patient affected.
And as the person you love drifts off into the darkness, so does their support network. At a time where it is so vital for the patient to receive love, the pain of witnessing the ravaging of mind and eventually body that dementia brings, causes some friends and family to walk away.
I talked to Sandra Jones about how she and her husband John support their friend Bob, who has dementia: “When Bob sees John it’s like he gives him the jigsaw piece he’s been looking for. You see the light come on in his eyes.” Once a week, Bob spends an afternoon at John and Sandra’s house. The couple, who are retired, have health conditions themselves. I asked Sandra if the challenges in their own lives make this difficult: “We don’t see it like that. John sees it as a natural change in Bob, one that he accepts as a part of their friendship. Often, all Bob needs is our time.”
As mum’s primary carer, I understand this. I found the shift from daughter to caretaker challenging but necessary. Loving someone with dementia tests the theory that love exists solely because of reciprocation – indeed, love doesn’t end where recognition ends. In my case, I reasoned that I had an enormous debt to be paid back to my mother. And so I borrowed mum’s gentleness and decency, kindness and humour, problem-solving skills and ability to support those she loved. I gave those things back to her when she needed them most.
Living alone, the symptoms of mum’s dementia were easy for her to hide. I became well used to her beautiful smile breaking over a lapse of memory or idiosyncrasy. She would use self-deprecating humour to disguise it. At 68 however, an angina attack meant that she was hospitalised and it was under the eyes of the night staff that mum’s difficulties became apparent. She was moved from the cardiac ward to the geriatric ward, and the staff gently cared for her, as she needed. She was diagnosed by a neurologist in the most dignified way imaginable: he asked her what she believed her condition was. “I think I may have dementia,” was her answer.
Once home, I divided my time between caring for my girls who both have autism and looking after mum. The thing she most needed from me was my time, and I’m so glad to say I was able to give her this. I remember holding her hand tightly when she said, “they tell me I have dementia Nicky, but I don’t have to believe them if I don’t want to, do I?” before breaking down.
Life is terrifying when you have no memory. From the crucial practicalities of life such as eating, working, dressing, staying clean and safe to less obvious but equally crucial issues like reference and dignity, memory guides you through. I would urge anyone with a friend or family member coping with dementia to know that as hard as it is to witness it, walking away will forever end the activity of neuro-pathways crucial for recognition. Seeing loved ones regularly preserves love for longer. The difficulties faced by people with dementia will not be eradicated, but time spent with friends can ease the challenges they have to face.
They call dementia “the long goodbye” for a reason. Its progression is slow and heartbreaking in its finality and cruelty. Slowly, mum let go of everyone except me and at the end, she would move her eyes to the sound of my voice. She would decline when I left and rally when I returned. Those final few days were the hardest of my life, ending only when I kissed her goodbye for the last time.
All I hope is that she knew how loved she was.
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