Hi
I’ve just been told that my dad who is 93 can’t have dialysis because of a lot of other health problems. His egfr is 6. His treatment will just be palliative although he’s not suffering from many symptoms at the minute. Does anyone have experience of how low egfr has to get before it is fatal. Thank you
So sorry to hear that. It’s not as simple as people here on a blog giving their opinion of how many weeks your Dad has left. Even the doctor who have knowledge of all his other health issues can’t do that. Basically you have been told that his body is shutting down and it’s time for him to just be made comfortable and not be poked and prodded anymore. Best not to think about his kidneys and just spend time by your Dad’s bedside reminiscing and making sure his basic needs are met and he is pain free. Often very elderly people in their twilight years are ready to go. It is those left behind that spend so much time trying to get them to hang on for longer. You’ve already done everything you can and it’s time for you to let go too. You’ve mentioned that you live together. His loss will be huge. Please take care of yourself at this time too. Everything is happening as it should. It’s the circle of life. None of us know which of our organs will shut down first. Time just to think about your Dad and not his health problems. Both my parents have died in the last five years. My Mum (84) suddenly with no goodbye and my Dad (90) who I cared for for a couple of weeks at his home then a palliative care facility for the last ten days. I know which one I would choose. This time you have now is precious. Sending hugs xx
I’m so grateful for your input on this site. Thank you, Badger.
You’re a sweetheart. Likewise
This community is invaluable and everyone in it
I couldn’t help noticing that myself.
Thank you so much for your lovely advice. I looked after my mum for her last 3 weeks and she passed away at home. As you say it was a privilege. But it was hard in the last few days keeping her comfortable. It was over a holiday time so I did not get as much professional help as I should have. I suppose that’s why I am a bit frightened by this news about my dad. Everything I have read suggests a kidney failure death can be hard to manage and I don’t want him to suffer in any way. If I can I would like him to be cared for in a hospice but that may not be possible. Thank you again for your support. Every little bit of help is a great comfort. x
You did well to manage your Mum until the end but that’s not always possible. When my Dad was getting close to the end which for him ended up being four weeks before he passed, I asked him what his wishes were. He said that he did not want to go into hospital and didn’t want any treatment. We filled out the end of life care forms which was quite a few pages long. Very detailed. I then contacted the local district palliative care team and made an appointment for someone to come to his house a couple of days later just for a chat. It was agreed that if possible he would stay at home. He managed the next week with me just visiting during the day then the next week I moved in and slept over. What really helped was asking him at what stage he would want someone else to care for him. I knew what the answer would be so I asked what if he couldn’t toilet himself. Long story short it turned out to be easy for him to say okay I’m finished. I rang the palliative care team to organise transport the following morning and we never looked back. There really was nothing to discuss as we’d already done that when the team visited him at home. They looked after him beautifully and I was able to just be his daughter. It really was very dignified. Really not necessary for you to imagine exactly what symptoms you’ll have to deal with. It may not go that way. Are you in the UK? I’m in Australia. I trained as a nurse in the UK. Have you contacted your local palliative care team yet? If not I’d do it first thing on Monday and take it from there. Try to look ahead rather than think about all his health problems. He’s so lucky to have you I hope you also have someone supporting you. You got this xx
Good morning Hm123456. I really am so sorry that you are having to go through all this again after your Mom. I think that if the hospital has made this decision that your father is not going to receive Dialysis. I would be getting in touch with them and asking for daily visits for your father and support for you as well. I was only 18, when I spent the last week of my nans life with her before she passed away and I just found it heartbreaking having to sit there and see her suffering and not be able to help in anyway and this was 49 years ago and I still have not got over it. There's certainly a lack of compassion towards patients these days. I am 69 with other health problems and I have been told it will be Dialysis or death for me. No transplant at all. I hope you have family or friends support as well because you are going through a lot. And are going to need support. Take care. Brian
Really? You don’t have that? I can’t imagine how people cope and get support there without family 
I was able to get my Dad a bed for the following day when I rang them at 9pm the night before. The only issue was that he hadn’t been assessed by a palliative care doctor. Had only seen the nurses who visited at home. My dad had collapsed on the bathroom floor and I couldn’t get him back to bed so I rang an ambulance to help me, telling them that he didn’t want to go to hospital. They stayed for nearly an hour making him comfortable and spoke to a doctor on the phone at the palliative care hospice who allowed the paramedic to do the doctor assessment and handover! That wasn’t usual I’m sure. Then when he got there the next morning that same doctor came to his ward to handover to the duty doctor. He was in a private room with ensuite. All for free. Paid for by a charity and also subsidised by the government. Breaks my heart when I hear how people have to fight for care depending on how much money they have in the US. It’s not perfect here in Australia but our public healthcare system is so precious
How does Australia manage its free healthcare so well vs the UK which is so stretched?
It’s not perfect of course. I trained as a nurse in the UK back in the 80’s. The NHS worked pretty well back then. There are so many people in the UK now. Australia isn’t as crowded and our population is spread out over a large area. We have a tax incentive that if you take out private health insurance you get some back in your tax return. If you have private insurance and go to a public hospital you can sign in as a private patient which doesn’t give you any benefit but it means that your health fund has to pay the public system for your care. Cheaper for the health fund to pay for you in a public rather than private hospital. If you go into a private hospital your stay is free but you always end up paying a gap for the doctor and anaesthetist etc. Private hospitals don’t have an accident and emergency departments which is why sometimes people with private healthcare just stay in the public ones. Personally I think you always get better care in a public teaching hospital. We have a lot of private hospitals and quite a lot of people who have private health insurance. In the UK there are so many wealthy people who don’t want to pay anything for healthcare and clog up the public system. Our community healthcare is pretty good as it’s cheaper for the government than people being an inpatient in hospital. I’m not sure why the UK doesn’t do the same. The best healthcare in the world is in Scandinavian countries. They pay high taxes then have excellent schools and hospitals for everyone
Thank you very much for sharing your knowledge. When you say "community healthcare", could you elaborate on what you mean? Thank you
Nurses that go out to people’s homes to help with dressings and showers etc. you may call them district nurses
Oh yes! Increasingly with aging populations, healthcare is being moved to home based settings. A great idea if there is sufficient support at home
I just wanted to clarify something about when I spoke in your other post of my aunt being on hospice care as she passed away after her kidney transplant failed. I am in the US and hospice care is care inside the home when someone is near the end of their life (but it could be in a facility as well). She had a hospital bed in her living room, and a nurse to give her medicine and they were prepared with medicines that they could give her near the very end should she suddenly be in any pain or discomfort.
I realized after reading other comments that hospice care may not mean the same thing in other countries and I apologize for any confusion. Also, it sounds like end of life options are different in other countries. I was basically just trying to say that if there is an option for him to have constant care so that he can be comfortable should any pain or discomfort suddenly arise, that would be something to consider.
That being said, I understand how difficult and overwhelming all of this may be and I am so sorry. You are doing the best you can and you can only control so much. Enjoy this time with your dad the best that you can.
Thank you so much. I am in the Uk but am lucky that there is a hospice funded by charity close to me and also a charity funded local community organisation that do hospice care at home. I’m hoping when the time comes to get help from them. I just feel a bit in limbo at the minute because he hasn’t been assessed for palliative care and I can see him going downhill. Thank you so much again.
Hi PKDpost. I'm in the USA. My dad is 96 and Hospice nurse sees him once a week. Can you give me just a bit of info on what services they provide once he becomes bedridden and can't go to the bathroom by himself. Will that part be left to me, or do they provide that service as well once you get to that point. How about feeding him? Do they provide help at night or just during the day? I'll probably find out all of this from our hospice provider as time goes on but thought I'd see how it works in your area. I do PD at night and current can't take care of him while I'm hooked to my cycler unless I pause treatment, unhook, then retook back up.
Do you have a Hospice Facility in your area that he can stay in 24/7 ?...I live in a small town and we have this and they just take what Medicare will pay and Donations people give...It is a very nice and clean facility and each Patient gets there own very large room..It would be so much easier on you.. taking care of your Dad...although you love him...is too taxing on your own health
Yes we do but it’s very small so it’s really only for cancer patients.
EDIT: this was supposed to be a reply to the question above from RonZone, I think I responded in the wrong spot...
I don't know much about the specifics. But I can tell you that you should be able request a longer hose for your dialysis that will give you more room to move around a little.
I don't believe hospice will help with food and they are only there during the day.
I think you can request a urinal and/or bedside toilet from hospice or insurance that should help with not having to go all the way to the bathroom.
I'm sorry you are going through this while also on dialysis. Praying for you!
How is your Dad going? How are you going?
Still waiting to hear from nephrology. He’s weak but ok. No other symptoms. I just am hoping to get more information soon to know what to expect.
Are you at home or in the hospital?
He’s at home. I just thought a egfr of 6 was dangerously low. Trying to prepare myself for the worst
Glad to hear you’re both home. As he won’t be having dialysis his kidney failure will catch up with him at some time. Best not to Google what it means to have an eGFR of 6 as there are too many variations of how people got there which can make a difference in how long it takes for their kidneys to deteriorate. Please try a live in the moment spending time with your dad instead of focusing on the end. He’s lucky to have you by his side. Take care xx
Please don't rely too much on eGFR. That's only an estimate. The hard data like creatinine, BUN, blood pressure, and so on are the determinants that indicate whether or not the kidneys are quitting. My hubby's creatine was 8 and BUN was 114 and his blood pressure was sky high (240s/120s). His eGFR was 6 but his team didn't care about it. They only started dialysis to bring down the blood pressure. You're fortunate to have palliative care on your side. Should your dad experience lots of swelling, palliative care may allow dialysis to remove it. In the US, hospice usually doesn't. Simply live life right now, enjoy each other. And, during your dark moments, remember that yesterday is gone, tomorrow isn't here, we're only living right now, in the present time. Truly, may we all seize the time given us and live it meaningfully.
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