Hi, I’m new to the community and would really appreciate some advice.
My dad is 78 and has end-stage kidney failure, with an eGFR of 9, alongside severe heart disease and diabetes. He has chosen conservative care rather than dialysis and is very clear that he wants to remain in his own home.
Over the past couple of months, he has deteriorated noticeably. He has lost around 6 kg and a lot of muscle, eats very little, has persistent diarrhoea after eating, has recently been vomiting, sleeps much more and is increasingly weak and withdrawn. He also experiences headaches, pain behind his eyes, aching joints and seems to be passing less urine. He lives alone and tends to minimise his symptoms because he doesn’t want any fuss or hospital intervention.
I contacted our local Recovery at Home service, and they felt he should now have support from the community palliative-care team. I plan to speak with his GP urgently about a home assessment, medication review, anticipatory medicines and completing his emergency healthcare plan.
Has anyone supported a parent with end-stage kidney failure at home? I would particularly appreciate advice about what support we should ask for, how quickly community palliative care can become involved, and how families manage when the person wants to remain independent and does not always disclose how unwell they feel.
I want to respect Dad’s wishes, but I’m frightened that he may deteriorate suddenly while he is alone and that I won’t know when he is entering the final stage.
I am very sorry to learn of your dear Dad`s diagnosis and deterioration. Whilst understanding completely his wish to be at home, I think you are right in now seeking assistance in order that he can get further help with is symptoms. The GP should be able to instigate the necessary steps fairly quickly, given the circumstances.
I would suggest also contacting our Marie Curie Support Service on 0800 090 2309 - calls are free are service available from 8am to 6pm Monday to Friday and 10am to 4pm Saturday and Sunday.
You are doing all that you can to support Dad at this difficult time. Please don`t hesitate to use this forum whenever you want to talk.
I’m sorry to read about your dad’s diagnosis and that he’s deteriorated noticeably over the past few months. It sounds like this is a very difficult time for you both. While I’m not medically trained, I will ask our Information and Support Nurse to respond to your post too. They’re not able to provide medical advice, but they can certainly share information about pain, symptoms and supporting someone with end-stage kidney failure.
I’m pleased to hear you’ve been able to contact your local Recovery at Home service and are planning to speak to your dad’s GP. To help prepare for that conversation, you may also find our information about getting care and support at home useful: How to get nursing and personal care at home | Marie Curie.
It’s understandable that you’re feeling frightened that your dad may deteriorate suddenly and that you may not know when he is entering his final stages of life. We have information about what can happen in the last weeks and days of life. This can be upsetting to read, so please take it at your own pace. Our Information and Support Nurse can also talk this through with you if that would be helpful. You can call us on 0800 090 2309, Request a callback | Marie Curie or speak to us via online chat.
I hope other Online Community members will see your post and share their experiences of supporting a parent at home. As Yvonne mentioned, you’re very welcome to use this forum whenever you’d like to talk.
My name is Marla; I am a nurse on the Information and Support Line with Marie Curie. I am so sorry to read about your dad’s illness and his recent deterioration. This must be incredibly difficult and emotional for you to see and experience.
I can see with the response from Yvonne1 and Bonnie that they have made some very good suggestions, put some helpful links in to read and signposted you on where to get support. In addition to this may I suggest (as a priority if you haven’t done so already and with dad’s consent) you ask your dad’s GP to review your dad regarding his overall struggle with the multiple symptoms he is currently experiencing.
It is important your dad feels as comfortable as possible and try to alleviate his symptoms of vomiting, pain and diarrhoea. As dad is at home the GP will be his main and first point of contact. As has been previously mentioned, the palliative care support can be put in place quite quickly if felt appropriate.
If dad struggles to take oral medications because of symptoms such as nausea and vomiting or tablet burden (taking lots of tablets) then there are other methods that can be used, these can include pain patches, injections or something called a syringe driver. I have included a couple of links that you may find helpful about pain and syringe drivers.
I hope you have found this response helpful, please do reach out to us here on the Information and Support Line via telephone on 0800 090 2309, email or webchat to ask for any more information or for a safe space to talk about how you are feeling. Take care.
