“My father died aged 78. He had been ill for a long time with Parkinson’s Disease and dementia, and he was in a nursing home. He could no longer speak and his movement was severely restricted.
About 18 months before he died I went with him to a routine hospital appointment to see his usual neurologist. During the appointment my father was unexpectedly told he also had terminal kidney cancer and that there would be no medical intervention. In other words, he was going to die.
He was told that the cancer specialist would be in touch to tell him more – and that there was no point having any more neurology appointments.
In tears, we were both immediately taken back to sit in acrowded waiting room and wait for the wheelchair transport to take us back to the nursing home. After a couple of minutes, a nurse bustled past and exclaimed loudly, “Whatever’s the matter?”
Where is the care in elderly care?
Six weeks after that appointment we’d heard nothing from the hospital. On making enquiries as to why, the consultant said that because my father was old and frail, there was “no point dragging him in to explain the bad news to him”.
How arrogant of the consultant to make that decision on my father’s behalf – and to not even bother telling him. I wonder if that oncologist has ever been told he’s going to die, but that no one thinks it’s worth talking about.
There was no information. And even if there was ‘nothing they could do’, could they not at least have had the courtesy to explain things properly?
My father was not even asked if he wanted to know how much time they thought he’d got left or how the disease would progress towards the end. And, of course, there was not a hope in hell he’d be given any advice on nutrition to help sustain him in the meantime.
And here’s the real nub of the issue in my view:
I suspect if my father had been younger – and not in a care home – he would have been treated quite differently.
There was no follow-up, no district nurse and no regard at all for his emotional wellbeing. Dad must have been terrified.
If he’d been at home, someone would have gone in to see him. And yet his needs were no different simply because he was in a nursing home and, I suspect, because he was being forced to pay for care himself.
The void into which elderly people fall can be very dark. And when you’re in a care home, it’s even worse. You can slip through many gaps. My father had been discarded by the hospital and, because he was in a care home, he was also off the radar much of the time as far as the wider NHS was concerned.
I was not angry that my father had cancer. I was not angry that he was going to die. I could accept that because he had been ill with other things for so, so long.
But where was the NHS in all this?? Where was the NHS palliative cancer ‘care’? Where was all the ‘good work’ that the NHS spends millions of pounds talking about in documents and glossy brochures? Where was the end-of-life strategy in action?
When you’re old and in a nursing home, as my father was, you can become invisible. He’d been there for three years. Aside from the individual staff at the home, who were kind, few other NHS ‘health’ professionals ever crossed the threshold to see him.
Until I challenged the NHS about care fees, the nursing home had cost my father tens of thousands of pounds. He paid all that himself from the sale of his home because the NHS had refused to help. And now it seemed the NHS was taking advantage and not acting – because he was in a care home.”