Stage 4 kidney disease in the elderly

[CMOTDibbler]

My dad (81, just about everything is failing - diabetes, heart failure, heart arrythmia, peripheral blood flow issues, autoimmune condition, leg ulcers, only one working eye...) has just been diagnosed with stage 4 chronic kidney disease.
He's been started on several new medications, but realistically what is the outlook for him? Dialysis wouldn't be an option at all, and he won't change his diet.
Any experience would be really helpful as he is a stubborn git as well, and I have to spend a long time working him up to any concept of change - or that they need to think about moving to care (currently have daily carers, district nurse for mum, cleaner etc) as he is struggling now to do anything

My Mum struggling with kidney failure, as well as other issues (heart) in her latter years. We were told her kidney function was around 14% and is gradually declined to around 10%.

With a balancing act of drugs, she was reasonably well and happy for probably around 5 years after diagnosis.

I'm sorry to hear this OP

I can't say what the future will look like but I wouldn't ask him to change his diet unless it causes immediate problems. Is he getting a lot of stomach issues that you have to deal with, for example?

Thanks both. TBH, I have been expecting him to keel over at any point for the last 10 years, but I think he keeps going out of sheer stubborness and because of mum.
I don't think he has massive stomach problems (though he would be unlikely to tell me), but he does have abdominal pain. His diabetes isn't terribly well controlled, and he is terribly breathless - but that has been for years now.

OP the pain is what I meant

I know someone in my age group who has to watch his diet because he gets the worst stomach cramps etc. He’s presumably stage 4 as on dialysis and waiting list?

But the reason I said was I think that in your dad’s position, I’d want to eat what I liked. One of my dad’s first comments after his heart attack was “I should have eaten more ice cream”! Because all his healthy living didn’t mean much in the end.

What do his doctors say? It sounds like he should go into a care hone really.

I agree that I wouldn't be bugging dad to reduce salt etc

Dad is fighting tooth and nail to stay at home. He's horrified by thought of mum going into care, even though she really enjoyed a respite stay when he was in hospital

Sorry I replied to this but there was a glitch in the matrix.

Can they go into a care home or assisted living facility together?

I'd love them to do that AutumnRose, but dad will fight it every inch of the way. There is still scope to up their carers to more visits per day, but its things like getting to hospital visits (he uses the volunteer car service which is great, but they won't take a wheelchair to push him to the department) that are an issue and that wouldn't be better in care I think. I'm resigned to the fact that a move to care will be as an emergency, and have had plans in place for a few years, but this latest diagnosis makes me more concerned that I'll have to get both of them in somewhere which gets tricky with their nursing needs, rather than just residential

As I don't know you OP, I hope you won't mind me asking

what's your position in all this? Are you struggling to cope or okay to coast along till the emergency happens?

if not - and I wouldn't be - then would you consider telling them straight how much stress they cause you?

it sounds mad but my dad used to apologise to me for the stress I underwent during his illnesses. I didn't expect an apology but I really appreciated it and the fact that he tried not to be a bother and went along with all my arrangements. I think it's good parenting, lol.

Well, its been a very long haul for me already tbh - mum has been ill for 12 years and every thing with them has been a fight. But its a lot easier than it was as I came to accept that there won't be any appreciation or co-operation from dad (mum is pretty much non verbal)

I'm just 80 miles away, have a teenager and a very full on job, so my spare capacity is rather limited!

If I were in your shoes, I would be telling them "please go into care for my sake, if your not your own". But that's me!

At my parents care home we were able to pay a carer to.use the home's minibus to take my parent to a hospital appointment and push the wheelchair. We could then turn up to the hospital at appointment time. And go back to work after the appointment. The home let us hire a carer.

Do they need the volunteer to take them to the department? My mum gets hospital transport and they leave her at the hospital reception and a hospital porter comes and takes them to the department they need, then back to reception.

It all adds on time and she can be out of the house for hours for a 15 minute appointment, but the number of appointments she has there isn't really any other way as we just don't have the free annual leave days to take her to routine appointments.

Where possible she tries to get them to organise appointments after her three times weekly dialysis (in same hospital).

BrokenWing - it really depends on the hospital and department it seems. At the 'big' hospital where dad has cardiology stuff you are left to get there by yourself and its a v long way from drop off. At 'slightly smaller hospital' in the same city (dermatology, blood clots, and diabetes) you are dropped right by the department so he can shuffle in with crutches. The kidney consultant appointment is at yet another, but small hospital, and dad described it as being treated like a king as he got pushed in a wheelchair all the time. And his ultrasound will be at yet another big hospital, though the volunteer car people told him there is a buggy from where they drop off to the department.
He much prefers the car service as with hospital transport it all takes so long and he's fretting about mum the whole time and whether she's going to make a bid for freedom - on a couple of occasions she has left the house to look for him when he's been gone. Fortunately her mobility is so bad that she doesn't get far before someone steers her home but he worries that she'll be taken away from him because of it

CMOT could the care agency provide someone to take your dad in a wheelchair taxi? And a sitter for your mum while he is away?
Sorry to hear your df is declining- I know you have been on this board a long time. 🌺

Hi TheSandwich - they don't use a care agency, its an independent lady who has 3 or 4 others working for her, so no one available as one offs all day (she is brilliant about popping in and doing extras as needed) as obviously they have everyone else. They live in a small town, and the big hospitals are all 45 min or more drive away so everything takes hours. They do arrange things as much as possible to be with mum during dads appointment even if its an extra cleaner session.
I seem to have been as long on MN on the elderly parents board as for ds! I never thought dad would make it this long. And now MIL is terminally ill, so we are entering a new phase on that front.

but they won't take a wheelchair to push him to the department) that are an issue and that wouldn't be better in care I think My father's nursing home will send a carer to appointments to do whatever is needed. It's an extra shift for someone, and we get billed for it.

Meanwhile, can you find another Agency that can do one-offs? Someone to accompany him to hospital and do any wheelchair pushing needed, and someone to sit with your mum. Or will you dad absolutely refuse that?

I'm pretty sure he'd refuse it. He's also a bit of a miser, so though they could absolutely afford it (and a taxi), it's always such an uphill struggle to get him to pay for anything.

OP “I'm pretty sure he'd refuse it.”

Well then, he misses his appointment.