This is a post that’s been maturing for a long time. About eighteen months in fact – since I lost both my parents in fairly rapid succession. It’s something I need to get off my chest, though I doubt anyone will ever read it. But if you are easily triggered by health issues, especially cancer, I suggest you click away now … This has nothing to do with writing either, so again feel free to read something more inspiring or interesting.
Mum and dad had been married for 61 years when my dad passed away on 13th January 2024, a week before my 60th birthday. He’d been in residential care for eighteen months by that time with late-stage Alzheimers. We’d noticed the decline for several years, but being hospitalised with flu in spring 2022 made everything speed up, not helped by the draconian attitudes of the NHS staff in Macclesfield hospital. My mum also had flu and was in bed at home, while I was point-blank refused entry to the ward, because of some post-Covid-hangover regulations. Fortunately, I knew of a friend of mine who set up something called John’s Campaign – the right of any person to have another person to be with, stay with, and advocate for them if they are unable to do so themselves. Furthermore, Macclesfield hospital had apparently signed up to this voluntary code.
So I took myself off to patient services, who promised to look into it and pointed me in the direction of the Admiral Nurses. These are a wonderful group of people who support dementia patients and their families and the lovely nurse based at Macclesfield took it upon herself to sort my dad out and I was (grudgingly) allowed onto the ward the following day. Whilst there I noticed things like my dad being given a card with menu options, which he was incapable of reading himself. When food arrived, nobody checked to see if he needed assistance eating, so dinner was often just taken away untouched and if he needed any personal care while I was there, I had to do it myself. He was stuck in a side room with no mental stimulation or even a friendly face, other than myself and the Admiral Nurse who also visited daily. His mental health declined significantly in the week he was there and I honestly believe if I hadn’t fought to be with him every day, he would never have left the hospital alive.
Dad passed away in a Care UK home just under two years later. The care in the home was exemplary – every member of staff was so kind and nothing was too much trouble. Even in death, he was dignified and respected in his bed.
Sadly, while dad spent his last days, mum was in hospital (yep, Macclesfield again) and was given a terminal cancer diagnosis of 3-6 months. She had secondary liver cancer and they never did find the primary site – given the barrage of tests she’d been having for some months previously, I have no idea why. The doctor who came to see her was again kind and patient; the staff seemed mostly absent – nurses huddled around computer terminals, and care staff huddled in groups chatting. Mum was in a ward for a week while they did more tests. The doctor phoned me at work and said she was worried as mum seemed very tired. I explained that might be because the woman in the bed next to her (literally) screamed for attention day and night, and poor mum had barely slept. Not the other patient’s fault, but she should never have been placed in that ward. Mum was moved to a private room and ignored for a few days, except on the day of discharge when she woke and was terrified to find a strange man rifling through her locker and pulling out her underwear – it turned out he was ‘checking her stuff before discharge’, which seemed a little pointless since nobody had checked it in when she arrived. But he didn’t introduce himself or make any attempt to preserve the dignity of a frightened elderly lady.
Mum went on a month’s respite care and had private physiotherapy. She was desperate to return to her small flat in a warden-controlled complex, so her friends could visit her and she could try to get back to a normal life for the short time she had left. We arranged carers to visit three times a day, but it became apparent very quickly that she needed more care. The company we were using (Alice Chiltern who cared for both mum and dad at home and employed such lovely dedicated and kind people) didn’t have the available staff for extra hours, so I moved in while we looked at alternatives.
The next few days were the worst of my life. I couldn’t cope mentally or physically, mum’s GP turned up with a prescription for end-of-life medication (nobody told me about this, or explained what to do – it was terrifying) and Macmillan was useless. Two nurses turned up who fussed about for five minutes, gave mum another prescription for oral thrush and said they’d come back in a few days – they could have been delivering library books for all the actual help they were. I phoned Macmillan, cried my eyes out down the phone and they couldn’t have been less interested. So much for hospices. I was just left, with Andy, to deal with mum who by this time was bedridden and incontinent.
To cut a long story short, we paid for a private ambulance to take mum to another Care UK home, where she passed away 8 days later on 3rd April 2024. The ambulance guys were fantastic – ensuring mum’s dignity, allowing her to go through the lounge to say her goodbyes, and yet their sense of humour made everything lighter somehow. And again, the care home staff were amazing, so kind and caring to me as well as mum.
My parents worked hard their entire lives, paid into the system and never asked for anything in return. Fortunately they had enough savings to be able to afford private care at the end, as the NHS care was undignified, lacked respect and compassion and couldn’t even ensure my dad ate his dinner or my mum’s personal possessions were respected. And I don’t understand why. I doubt the carers in private care homes or the ones who provide in-home care earn much more than the minimum wage and yet they were all, without exception, kind, efficient and compassionate.
Mum met dad when she was 17. In the end, she couldn’t live without him.
The NHS is broken.
