Andy Burnham’s vow to overhaul England’s social care system, and his own emotional account of his father’s care for Alzheimer’s, prompted an outpouring of deeply personal responses from Independent readers.
Our community shared their own experience of caring for a parent, a partner, or a sibling – from a devastating account of a wife’s decline in a care home to a mother’s carer since childhood.
Many raised a question that felt more urgent to them than any figure needed to fund reforms: what is all this care actually for, if it isn’t improving people’s final years?
Others described the exhausting reality of professional care work, or contrasted good, well-staffed provision with the low wages the same staff are paid.
Here’s what you had to say:
What is all this care actually for
My wife has spent the last 1,586 days dying in a care home and hospital. Five years ago she was a professional woman running her own business. Last night when I saw her, she was lying immobile in bed, mumbling, unable to speak, unable to hold a spoon to feed herself, unable to control her bladder and bowels. She cries in pain when the carers reposition her or change her continence protection. She has skin breakdown with bed sores on her feet and knuckles. She is now on morphine.
Yet the care home keeps trying to feed her and get her to drink, and the doctors prescribe pain management but keep her alive. I signed a DNR as her attorney, but no one explained it only covers cardiac arrest, so doctors kept her alive when she had a medical emergency two and a half years ago. Since then I have watched her lose her ability to walk, be hoisted from bed to a communal room full of dementia patients, and lose all memory of our forty years of marriage.
I am fortunate that she is fully funded by the NHS, otherwise I would be facing bankruptcy. But what I ask, and no one ever has the decency to answer, is: what is the point? Are they enhancing life, or stretching out the agony of dying?
TomHawk
We are keeping people alive longer, not living longer
The shabby care my sister now gets, and part-pays for, tells me that something needs to be done. I’m now disabled myself, in part because I took on her care when no one else would.
It’s something I’ve noticed and talked about with others for a long time: we are not living longer, we are being kept alive longer. Why is it a case of “never mind the quality, feel the width”? We live long lives, but our twilight years are often spent in pain, in sickness, in suffering.
Drone1970
A carer since the age of 14
I have been my mother’s carer without any support or even recognition since I was 14. I am about to turn 54. But I don’t think that’s a reason to refuse to help others. Money is tight for – almost – everyone, I know, but that means help is needed more, not less. And maybe one day you will need care from the state. I doubt you’d appreciate people using your reasoning to refuse it then.
Chrissa
The brutal reality of professional care work
Ahh the joys of being a care worker. Did the job for four years before getting a job in the NHS. Brutal hours, a lot of which you don’t get paid for, constantly being rung up day and night being asked to do extra. Zero-hour contracts that forced me to carry on working after having my thyroid removed despite the infection risks. There were some nice clients but a lot that were awful. The situations that some people were left in was beyond the pale. Thank god I got out of it.
gtvv6
Amazing care staff paid a minimum wage
Our much-loved uncle lived with vascular dementia for some time, and we arranged for him to be placed in a residential care home in London, where the fabulous staff looked after him so well. They were all absolutely amazing and he was happy. He paid for his own care costs, although some of the residents were accepted into the home free of charge.
It seems grossly unfair that, in all probability, those wonderful staff merely receive a minimum wage despite working so hard to make life pleasant for elderly people in need of full-time care.
JanetC
Watching my parents’ decline changed my mind
If our parent’s generation had grasped the nettle, experiences like this could well have been spared. I have also experienced my parents’ demise and the crippling cost of their care. I for one will be willing to pay a social care levy and fully support Burnham’s aspiration.
Kernow
Some of the comments have been edited for this article for brevity and clarity.
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