Hi everyone
I've just joined the forum and have been reading some of the threads over the last few days.
The thread last year by DesperateOfDevon really spoke to me, I could so relate to the frustration and ridiculous situation with hospital, local authority, care home, all trying to side step responsibility and getting denied funding etc.
My mother (95) has advanced Alzheimer's and had been living safely at home with the aid of daily carers, who were doing a wonderful job. I was buying her food, collecting prescriptions, and spending lots of time with her. She had a couple of trips to hospital at the beginning of 2021 but was discharged back home within a few days. I installed cameras in several rooms so I could monitor mum when she was home alone, this proved to be invaluable. She was starting to get unsteady on her feet, even with a walking frame, and we had to pick her up off the floor a few times but luckily she didn't injure herself at all. She was eating and drinking normally but sleeping about 23 hrs a day. In May 2021 she was unresponsive in bed when I/carer arrived and was rushed to hospital on blue lights. The hospital stated she was very ill and unlikely to last the night. They gave her IV antibiotics after checking with me and we were advised to visit to say goodbye. The following morning when I called to find out why we hadn't received a call to say she'd gone, I was advised by a nurse on the ward that she was sitting up in bed and had eaten breakfast! My brother and I had been planning the funeral the previous evening on the journey home from the hospital! We were advised mum was end of life and wouldn't see the new year. The hospital also advised she could only be discharged to a nursing home. The following month mum was duly discharged to a local nursing home organised by the local authority on a 6 week discharge to assess basis. Fast forward 4 months and mum finally had her assessment. She was turned down for full funding, but approved for funded nursing care. This only covers a fraction of the nursing home fees so we had to apply to the local authority for a loan to pay for the fees while we were waiting for mum's bungalow to be sold. While we were waiting for this decision to be made by the local authority I pursued the "end of life" diagnosis we'd been given by two hospital doctors and her new GP. A fast track application was submitted (which took 5 weeks to be sent to the CHC) and on Christmas Eve I was advised that mum didn't qualify for funding as her health wasn't in rapid decline. I must confess I was a blubbering mess on the phone receiving this information as by this stage I was being chased for £1,000s in fees that mum couldn't pay. I was advised that mum was considered palliative stable and not end of life. Since August mum has been bed bound, unable to eat solids, she has gangrene in her feet, her skin is very fragile, she is doubly incontinent, she doesn't know where she is, she doesn't know who we are, and she has lost her speech apart from the occasional yes or no. Basically she has zero quality of life. She is on morphine patches for pain control and the GP has prescribed a morphine pump but as yet that hasn't been implemented.
Fast forward to March and mum is somehow still clinging on to life. After nearly 4 months we've finally heard back from the local authority that they don't consider mum their responsibility any more as the nursing home (that they placed her in) is outside their boundary (only by a few yards apparently) and they want me to apply to the county authority to start the loan application off from scratch. I have been advised that this will fail and I will be referred back to the city local authority as mum has lived within their boundary for 95 years. Aarrgghh!!
If I may, I have a few queries:
- am I going completely mad or are the city and county authorities trying to shirk their responsibility?
- how can mum be end of life in April/May but now only palliative stable 8 months later, she has declined, not miraculously improved?
- what can we do to help mum have a quick peaceful end?
- when will this hell end, I'm not sure how much longer I can cope?
Sorry this message is so long, I wanted to introduce myself and explain the situation I am facing, but I do realise this has turned into war & peace. Any comments, suggestions, etc., would be much appreciated!
Many thanks for reading my saga
Sheelagh
I've just joined the forum and have been reading some of the threads over the last few days.
The thread last year by DesperateOfDevon really spoke to me, I could so relate to the frustration and ridiculous situation with hospital, local authority, care home, all trying to side step responsibility and getting denied funding etc.
My mother (95) has advanced Alzheimer's and had been living safely at home with the aid of daily carers, who were doing a wonderful job. I was buying her food, collecting prescriptions, and spending lots of time with her. She had a couple of trips to hospital at the beginning of 2021 but was discharged back home within a few days. I installed cameras in several rooms so I could monitor mum when she was home alone, this proved to be invaluable. She was starting to get unsteady on her feet, even with a walking frame, and we had to pick her up off the floor a few times but luckily she didn't injure herself at all. She was eating and drinking normally but sleeping about 23 hrs a day. In May 2021 she was unresponsive in bed when I/carer arrived and was rushed to hospital on blue lights. The hospital stated she was very ill and unlikely to last the night. They gave her IV antibiotics after checking with me and we were advised to visit to say goodbye. The following morning when I called to find out why we hadn't received a call to say she'd gone, I was advised by a nurse on the ward that she was sitting up in bed and had eaten breakfast! My brother and I had been planning the funeral the previous evening on the journey home from the hospital! We were advised mum was end of life and wouldn't see the new year. The hospital also advised she could only be discharged to a nursing home. The following month mum was duly discharged to a local nursing home organised by the local authority on a 6 week discharge to assess basis. Fast forward 4 months and mum finally had her assessment. She was turned down for full funding, but approved for funded nursing care. This only covers a fraction of the nursing home fees so we had to apply to the local authority for a loan to pay for the fees while we were waiting for mum's bungalow to be sold. While we were waiting for this decision to be made by the local authority I pursued the "end of life" diagnosis we'd been given by two hospital doctors and her new GP. A fast track application was submitted (which took 5 weeks to be sent to the CHC) and on Christmas Eve I was advised that mum didn't qualify for funding as her health wasn't in rapid decline. I must confess I was a blubbering mess on the phone receiving this information as by this stage I was being chased for £1,000s in fees that mum couldn't pay. I was advised that mum was considered palliative stable and not end of life. Since August mum has been bed bound, unable to eat solids, she has gangrene in her feet, her skin is very fragile, she is doubly incontinent, she doesn't know where she is, she doesn't know who we are, and she has lost her speech apart from the occasional yes or no. Basically she has zero quality of life. She is on morphine patches for pain control and the GP has prescribed a morphine pump but as yet that hasn't been implemented.
Fast forward to March and mum is somehow still clinging on to life. After nearly 4 months we've finally heard back from the local authority that they don't consider mum their responsibility any more as the nursing home (that they placed her in) is outside their boundary (only by a few yards apparently) and they want me to apply to the county authority to start the loan application off from scratch. I have been advised that this will fail and I will be referred back to the city local authority as mum has lived within their boundary for 95 years. Aarrgghh!!
If I may, I have a few queries:
- am I going completely mad or are the city and county authorities trying to shirk their responsibility?
- how can mum be end of life in April/May but now only palliative stable 8 months later, she has declined, not miraculously improved?
- what can we do to help mum have a quick peaceful end?
- when will this hell end, I'm not sure how much longer I can cope?
Sorry this message is so long, I wanted to introduce myself and explain the situation I am facing, but I do realise this has turned into war & peace. Any comments, suggestions, etc., would be much appreciated!
Many thanks for reading my saga
Sheelagh