Farewell

My mother had a stroke early on Tuesday morning. It robbed her of the ability to move her right side, swallow and talk.


She had long been struggling with dementia and had become a small and mostly absent person. Gone was the campaigner for peace, who has survived the London blitz, helped set up the UN after the war, become a passionate educator and a mother of three, who marched against the Iraq war when she was 70 and wore a CND peace badge until she didn’t know what it meant anymore. Many people have written about dementia, but until you watch how the disease slowly and terribly diminishes someone you love day by day it is hard to really understand.

We had found a copy of an advance directive my mother had written and signed in 1997 some weeks previously when going through her papers and bills. It made things easier. It was very clear. Nothing heroic and “if I get dementia definitely no treatment for infections or other significant illness”. So we kept her at home. The staff at the extra care flats where she lived were brilliant. They cared. They kept her comfortable and spoke with tenderness and caring as they washed and turned her.They took care of us too. They stayed beyond their normal shifts and volunteered to sit with her to cover some of the night time so that we could sleep so only people my mother knew would be there if she woke distressed. As my sister said in her euology they truly are "the Angels of Rosemary Court".

We had moved her to a different general practice after problems with the previous practice who had shipped her into hospital unnecessarily and never seemed able to give her any continuity of care over the 10 years she was a patient there. The new practice, despite taking over her care at such a difficult time were fantastic, they listened. They immediately assigned her to one GP (because that is what they do for everyone) who explained to me how to contact her and what to do when she wasn’t there. They visited her before the stroke even though we hadn’t requested a visit, to get to meet her and assess her. They visited her after the stroke and were respectful of my mother’s wishes. They were supportive but unobtrusive. They contacted the nursing teams, out of hours, and the carers in the building. They were in daily contact with us throughout. They were exactly what a general practice should be.

The community nurses were great. They responded quickly always, came regularly and when promised, managed her care with gentle kindness and sensitivity both in hours and out of hours. Their expertise meant she was peaceful and comfortable for all but a few hours when we struggled to control excessive secretions but in the end sorted that too.
My mother died peacefully 6 days after her stroke. She was surrounded by her family, her photos and diaries and memories. We nursed her and when she roused she knew we were there at her side. We told stories about her life, read her diaries, looked at old photos and we became reacquainted with the person she had always been before old age had diminished her: the bright, articulate, opinionated, fiercely loving sometimes difficult woman who was my mother. I don’t think we would have had that if she had died in a hospital bed in the hurly burly of an acute ward. It was a gift to have those days with her.

We were given that gift by those who helped us care for her, the carers, the nurses, the GPs.

Much is written about the NHS and the social care. How it fails, how it needs to do better. I have written about what goes wrong too. I think though it is important to remember that there is so much good that goes unheralded in the press: the care given every day to the most vulnerable and frail. Given generously without expectation of thanks. Individuals who go far beyond what they HAVE to do because they know it is the right thing to do. They are there because they care in a genuinely authentic way as an individual, not just a professional.

So thank you to all the unsung heroes of the caring professions!

I am very grateful to them all and proud of a service that can facilitate such a dignified and gentle end.