I’m so glad to have found this place.
My elderly mother is a life-long chronic alcoholic and heavy smoker. Her addictions have always come before everything else in her life, including her children.
She has lived alone for many years, though 4 years ago, I had to move her from a huge and sprawling first floor apartment into a tiny bungalow, as her mobility was declining and she was becoming incontinent.
I have been caring for her in her home ever since, doing all her shopping, cleaning, bathing her etc. She always refused outside help and sent social services away when I tried to arrange something.
in recent times, her quality of life has been very poor. She couldn’t walk unaided, but for some reason would refuse to use the zimmer frame I bought her, and would sometimes bum-shuffle on the floor instead - other times she would surf along the furniture and walls.
Ten days ago, I found her collapsed on her kitchen floor at 4pm. I had left her happily heating her dinner the night before at around 7pm - she liked to do this, and would sit and eat quite well. When I walked in, I realised very quickly that she’d had a stroke, and horrifically that it must have happened shortly after I left the night before, as the dinner was still on the side, and the oven was still on. I would normally go round for my first visit of the day in the morning, but typically our boiler had broken down and I had to wait for workmen to arrive (we’d had no heating for two weeks at zero degrees outside). She’d been on her cold kitchen floor for over 20 hours - how she was still alive I don’t know.
I went with her to A&E in the ambulance. Her treatment there was diabolical - she was left naked from the waist down, very agitated, and lying in her own urine. She was left on a trolley in a public area like this for 4.5 hours, and wasn’t given any medication or even fluids, despite me telling them how she’d been found and how dehydrated she must be.
Eventually she was moved to the stroke ward. She has had a massive stroke, and it’s left her extremely disabled and extremely ill. She has lost all use of her right arm and leg, and her speech is extremely limited. She sleeps most of the time. After a week on the acute stroke ward, the consultant said she should be moved straight to a nursing home, as she wasn’t responding to therapies and he didn’t believe she could even understand what people were saying.
She has a catheter, had an NG tube and was on oxygen, but none of these things count towards NHS continuing care (and funding), so I was told it would all be at her own expense. She owns the tiny bungalow outright, but has next to no money, and absolutely no other assets.
i had tried to talk to her about this, about LPA, and making a will many times, but she wouldn’t entertain it, and thought I was after her money, or was trying to put her in a home. She used to beg me to never put her in a home, and said she would kill herself if I ever tried.
There was a last minute change in decision when she clearly started understanding and responding (but only to me). It’s like she just can’t be arsed to speak to any of these strangers, but when I arrive, she can say some single words, and has demonstrated that she understands what I’m saying.
So…they moved her to a stroke rehab unit, which is a farce quite honestly, as she is barely awake, had made absolutely no physical progress, and has vocalised that she wants to die.
After much persuasion, we actually filled in all the LPA stuff online (both H&W and Finance/Property) and sent the signed forms off just before this happened, but they haven’t been registered as yet - this can take 8-10 weeks. We have agreed a DNR order, but so far they have actively treated a chest infection with IV antibiotics, they’ve given her medical withdrawal from the alcohol, and they insisted on feeding her via an NG tube, even though she kept ripping it out. They replaced it 3 times and bound her hands in mittens to try to stop her. Eventually, I managed to drag the SALT into her cubicle while she was actually awake and trying to communicate. I said “mum, you know you have this tube up your nose - do you understand what it’s for?”. She said “food”. I asked “do you like having the tube” and she shouted noooo. I said if it comes out again mum, do you want them to put it back in, or do you want them to leave it out? She said “no tube” very clearly. I made the SALT write that down and they put it on her notes. The SALT then went on to explain feeding at risk and mum agreed to it.
Then we moved to this rehab unit. Day one, they gave her a mousse and some thickened liquid. The HCA told me she’d “encouraged” mum by telling her that if she doesn’t eat it, they’d have to put the tube back in. FFS, I had to explain what had been agreed and asked that they all familiarise themselves with mum’s case. I instructed that under no circumstances is she to have another NG tube as she gave a clear instruction to medical staff when they determined that she had capacity to do so.
So here we are. Mum sleeps most of the day, responds very little, has absolutely no physical strength and no chance of being able to use her frail body again. She can’t sit, or even adjust her own position in bed without help. She is catheterised, and is just alive, breathing, but barely existing in this stoke unit.
when she does open her eyes, she mouths “help me” or “want home”. She doesn’t seem to register that home is not and never will be an option as she’s far too ill and far too disabled.
My family and I just want her to pass away either way what tiny bit of dignity she has left, and she keeps saying “die”. Yet because of the laws we have, they are practically force feeding her mush to keep her “alive”. It’s not living though, and never will be.
Every day I look at her and wonder if it’s going to be her last day, but she’s still here. Not improving, with no chance of ever living any kind of life again, but alive.
I’m in this state of purgatory, waiting for the LPA to come through, so I can start to make some sensible decisions in line with her wishes. In the meantime I have to sit and watch her suffer day in, day out, while being spoon fed slop. Even her sippy cup of water has been thickened to the texture of glue.
I can’t imagine she’ll be allowed to stay in the rehab unit long, as she’s making absolutely no progress.
If they kick her out, I think I will have to bring her here to my home and look after her here until she dies. I don’t know how this works but obviously we would need a hospital bed etc. What about the catheter? I don’t mind caring for her, but I draw the line at that.
My head is absolutely pickled with it all, but it’s helped to read about other people’s experiences.