Caring for Someone with Stage 4 Kidney Failure/End of Life


I am hoping some of you may be able to offer advice.

We are in a desperate situation with my Father (85yrs). He was diagnosed with kidney failure 6 years ago, he also has a heart condition for which he has a pacemaker and a stoma bag. In March 2020 he went down hill very quickly, his filtration rate was 21. The doctors have ruled that there is nothing that they can do for him and essentially my Mum has been left to get on with it as his sole carer, she is in her late 70s with her own health needs. He has very limited mobility and is incontinent, both cause Mum a lot of work and physical strain.

Two weeks ago he took another turn for the worse, his filtration rate is now 18, he is in a lot of pain but refuses to take any pain relief. His face has now swollen up, with two large lumps either side of his mouth, which is very distressing to see as he doesn’t look like my Dad any more, I have no idea what is causing this. The GP has said that he cannot help as it is end of life care, the district nurses are meant to visit twice a week but never turn up and he has been offered a place at a local hospice but refuses to go saying that he wants to die at home.

Mum is absolutely exhausted and at breaking point. I am very worried about her, she is very low and keeps getting bad migraines.

Firstly does anyone have any idea of who we can turn to for help? Secondly, could I have a frank idea of what the end will look like? All we have been told is that it will be “peaceful”, however for Mum it is anything but and she is dreading it getting worse.

Many thanks
Katie Louise

The GP needs to make a FAST TRACK application to the CCCG tomorrow, for NHS Continuing Healthcare, and care should be arrange within 48 hours! Is dad getting Attendance Allowance? Support at home from the hospice?

Thank you for your reply, which is very helpful and I will pass onto Mum.

He does receive a carers allowance and is under a care plan, which includes two visits a week by the district nurses, however they never turn up and haven’t been in over two months now. The last time they saw someone was when the nurse took his bloods two weeks ago (Mum called the GP as he was struggling to breath). She couldn’t understand why the district nurses weren’t coming and was going to follow it up but still nobody has appeared.

In the short term Mum was able to cope and the diagnoses was that he wouldn’t last very long, this was back in March. That hasn’t proved to be the case and things are getting increasingly worse, like the incontinence, breathlessness and hernia. Mum just feels that she cannot cope, often calls me in tears, which isn’t like her, and I am starting to become very concerned about her mental wellbeing.

Thank you again for your help.

Katie Louise

Sorry I meant to say, the hospice are visiting for the first time tomorrow following the latest blood test results.

They wanted to admit Dad but he refused to go, hence why they are coming out instead. I think dying at home would be an option however we don’t know what the end will look like and all we have been told is that it will be peaceful, which isn’t really much help.

Thank you again.

This is exactly why your GP should be applying for fastrack Continuing Healthcare! Whatever he needs should then be provided free, either at home or in residential care, whichever the family want.