Stage 5 End stage kidney disease - Husband seems to be givin

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I'm new to the forum and looking for some help please.

I care for my husband who has end stage kidney disease. He has been on peritoneal dialysis for the last 3 years and has also other complications like heart disease with 2 prior hear attacks, type 2 diabetes, diabetic nephropathy, etc.

Over the last 10 days we have discovered that the pains in his left leg were due to superficial thromboplebitis and that his left leg has dropped.

His mobility was already very restricted and with these current conditions, he has not been able to get up from his bed for the last week other than go to the toilet with great difficulty. He has not been eating over the week with very little fluid intake - perhaps about 50 - 100 calories in a day maximum. Because he is also on insulin, it seems I'm playing a balancing game as I'm unsure if I'm to give him his medicines or not, if so how much etc. I couple of days he's been getting hypos when I've given him some chocolates and sugar to bring the blood sugar levels up.

We had conflicting, if not very little advice about how to manage the situation from the GP's. The most helpful thing they have said is that your husband's is a complicated case and is best dealt with by the renal team, as if I could contact the hospital renal team at my beck and call!

I'm not sure who I can talk to if my husband is at a stage when he needs palliative care or am I over imagining the situation?
Hi Rama
Sorry to hear how poorly your husband has become. I lost Dad at the end of last year and he was being "conservatively managed" for his kidney disease. Like your husband there were several other serious issues in the mix. I found it nearly impossible to get any professionals to comit themselves to say that dad was "end of life". I think this is partly because it is hard to predict, partly because no one wants to be the one to say it and mostly because of finances and trying to avoid paying for CHC. I did find that as dad approached the end he stopped eating and was having only a little soup or tea per day . It does sadly sound as though your husband may benefit from palliative care now. Are you able to ask district nurses?, they are sometimes more in touch with the practicalities than GPs.
In my area, the hospice now give community support to those with difficult long term health problems. I would suggest that you talk to your local hospice and see what support they can give YOU, as well as your husband.
Thank you for your responses. I will certainly try the dialysis nurse tomorrow. But in the meantime I'm thinking I might write to the consultant and the GP practice outlining the problems I'm having and the need for a direction and advice. Would you say it's a right approach?
Make it clear exactly what you want to help you and your husband, ideally in list form.
This is what I am thinking of asking: Please let me know if anyone thinks I need to ask something else. Thanks in advance.

As his carer, I am at my wits end not knowing how to deal with the situation. I have a number of questions like:
1. Do I give him his medicines/insulin, especially when his maximum fluid intake in a day is about 100 calories? What are the right doses considering that he is easily prone to hypos when he does not eat?
2. Should he be taking Tramadol for his pain or not?
3. Do I continue with his dialysis daily or are any changes required?
4. How long can he go without eating or are these symptoms of end of life, especially when I see his other symptoms of dry skin, itchiness, nausea, occasional shortness of breath, pains in various parts of his body, occasional cramps….
5. Is he at ‘end of life stage’?
6. Should we be considering palliative care?
7. When and who do I talk to about such things?
8. Is there a care or support system in place?
9. As his carer, can I ask questions on his behalf, or if not, what do I do to make it happen as my husband is happy for me to speak and represent him?
10. Are we foolishly optimistic in thinking we can make a long planned trip abroad to visit our grandchildren in a week on 20th August?
Hi Rama
I think that all sounds reasonable. It does sound ulikely that he would be well enough to "go away" . How would you cope without your regular nurses to call?
Have you heard of DNR/AND forms- that may be something you wish to discuss at this difficult time if not already in place.
Those questions seem very sensible.

My mum was very frail, in a nursing home, and clearly going downhill, no one was really talking to me, so I googled "Signs of Dying" as tears rolled down my cheeks. I'm so glad I did. There is a lot of really helpful information which explains how the body gradually shuts down towards the end of life, how the body knows how much food and drink it can cope with, and why. I urge you to read this.

You need to know how long the doctor thinks your husband has left. Don't avoid this question, it's so important, although very distressing too. They won't be able to tell you exactly, but will have a very good idea.

From the way you describe your husband, he is definitely not "fit to fly". Talk to the GP and see what he thinks. I have met a number of people whose partners have died away from home. The amount of red tape and complications is unbelievable, one lady wasn't even allowed to take her husband's body out of the country! If he made it to the relatives, how would you cope if the airline refused to have him on board for the return trip? (My brother died in Uruguay, after cancer was diagnosed and he had major surgery, he couldn't fly home, but died out there).

Surely he needs love, peace, and the comfortable surroundings of home now?

Definitely ask your GP to make a "fast track" application for NHS Continuing Healthcare.

Another thing to consider now is what sort of funeral you want, how to celebrate his life in the most appropriate way. Think about his favourite music, for example.
I too say please ask the questions you need answered - but be aware they may be distressing.

I know from my husband who had cancer that doctors don't tell you what you don't ask, as they don't want to upset you and assume you haven't asked because you don't want to know the answer! But sometimes we simply haven't a clue just 'how bad' things are.

It's a bit of a vicious trap - I can remember being SO shocked when my father died in hospital, because I truly hadn't had a clue he was so near death, ie, his condition was so grave. Docs and nurses often use very 'ambiguous' or 'placatory' terms which THEY know the meaning of, ie, the significance, but which we interpret in a different way. eg, if you ask how he is they say 'he's doing as well as can be expected' and you just hear 'doing well' in your head - what they mean is 'as well as can be expected from someone who won't see the month out'....

If you ask the WORST questions - eg, my husband asked bluntly 'How long have I got?' - they may not be able to give definitive answers - survival stats are always based on 'general experiences' (eg, 'most patients at this stage can expect to live for xxxx') and each patient is an individual who may do better or worse than the stats. My husband's GP told me he might live five days or five months - they just did not know.

But if you know as much as the medics do, then at least you will not feel afterwards or during that you have been 'misinformed' and distressed thereby.

It really is up to the individual, though, just how much you WANT to know. Some are 'less unhappy' knowing 'the grim truth', some NEED to think optimistically in order to get through the nightmare at all...

And sometimes the optimism - even if unrealistic - can not only make the 'final times' less unbearable, but even help to defer the end. For example, it could be, you know, that even if at the moment a foreign holiday is out of the question, if your husband focusses on that, and really really is determined to make it happen, he might actually rally, and make it possible.

The human spirit, ie, the person we are, and our mind-body totality, is complex, and sometimes people do 'overcome' physical frailities almost by sheer will power. The converse is also true, and sometimes people can 'turn their faces to the wall' and 'give up' and then the end comes for them sooner than it need - but to them, it is better than dragging out a tormented existence.

For your husband, it could be that even if YOU know that a foreign holiday is impossible, he wants to think it is possible, and so you may have to find the ways of saying 'then let's look forward to it'....even though you yourself know it cannot be.

This is a horrendously difficult time for both of you, and there is no 'tried and true' map through it, and all you can do is your best in circumstances that challenge us to the core. Please don't torment yourself too much about whether you are making mistakes along the way - be kind to yourself, and relish each and every day you have with your husband. None of us know the immediate outcome of any day - to an extent, each and every one us lives with uncertainty.

As for strength - you will find it, you won't know where from, but it comes all the same.

Kindest wishes to you at such a time as this -
My dad had prostate cancer. Here is my experience of his journey.
The cancer didn't seem to affect him much for a long time, but just after mum in law died, while we were planning MIL's funeral, I realised dad was in trouble, he was weeping liquid through his legs, clearly something was happening, but I didn't know what.
I asked the GP, but initially he refused to talk to me.
I rang a cancer charity helpline and they said that given dad's current symptoms, he had about 6 months. Since mum was housebound and disabled, that meant I needed to be as prepared as possible beforehand, especially as I also cared for a son with severe learning difficulties, and FIL was newly widowed and had heart problems.
Armed with this information, I went back to the GP, who was then more forthcoming. He told me he couldn't give precise information about dad, as that would breach his duty of confidentiality.
However he could talk in general terms about what generally happened. Whilst it was difficult to be precise, but what tended to happen was that the patient could manage to potter around at home up to a point. Then they would take to their beds, and this signalled a final stage, which usually lasted a week or two.
Dad was in bed for a week, was then transferred to the hospice, where he died peacefully in his sleep a week later.