Final Stage of End-Stage CKD - life expectancy?

Oh dear Harry, poor you and poor Mum.  Although I'm a patient with CKD, I'm sorry I haven't had any experience of nursing someone through the final stages, and I would have thought the very best people to advise you and answer your questions would be her renal consultant or team.  You should not be left to care for your Mum alone at this stage - have you spoken to her GP at least during the last week that you say she has been deteriorating?  If your feelings about her nearing her end are founded, then her GP should be able to put some extra care in place.  Please don't manage this on your own and do come back and let us know how you and she get on.  Meanwhile, little sips of either a sports drink or fizzy lemonade can help with the nausea, plus lots of water, of course.  Also, there are special drinks containing all the necessary minerals that your GP can provide to help sustain your Mum if she hs no appetite.

Lots of good luck wishes - do take care of yourself through this as well, your Mum is blessed to have you. 

Hi Mrs O,

Many thanks for your thoughtful response.  I'm sorry to hear about your own condition.

I'm a trained care worker, so I'm generally okay with things.  I can handle the meds, plus I'm keeping mum on a diet to minimise conditions like hypokalaemia.  She has a carer each morning and evening for personal care and I do the rest.  In many ways it's manageable and I don't really need any respite - I want to be her with her to the end.  I take your point, though - it can be hard.  Mum's GP is very good and is keeping tabs on the situation.  Out of hours, if I'm in any doubt about anything, I'm straight on to 111.  Mum's had a couple of recent paramedic visits, both of which have resulted in trips to hospital.  Generally, though, her vitals are pretty good.  Sats are fine.  Blood sugar is under control (she's insulin-dependent diabetic).  Her doctor said that things would progress quite rapidly now, with the diminished function having to cope with the same medication regime.  She takes painkillers only when absolutely necessary (she has rheumatoid arthritis too, and had a mini flare-up in the week) and at the moment doesn't seem to be in any real pain or discomfort.  It's about as good as it can be for her.  I know it won't be too long now, though.  I hope not, really - though of course I don't want her to go.  I want what's best for her.  The way it is now, I think that will be a quick and comfortable passing.  If this goes on for weeks, then it does, and I'll do everything I can to make that time as good as possible. But I hope it comes quickly now, for her sake.  She has ever-more-diminishing quality of life.

Hello Harry,

So sorry to hear of the situation you both find yourselevs in.  Although I haven't cared for anyone I have had end stage and dialysis and a transplant.  Mrs O has put things very well and her advice as always is spot on.  Regarding you Mum not eating as much as this it not nice for you, she really can't help it, I feel my husband was in the same situation as you are now when I was stage 5.  I felt so sick I couldn't even look at the food never mind put it anywhere near my mouth, I physically couldn't do it and hubby would try and tempt me with things I used to like (your taste buds change too) but I couldn't do it and I couldn't help it.  You sound like a lovely caring gent and your Mum sounds like an incredible lady and a fighter.

My neph once said to me that having kidney failure is the best way to die as you just go to sleep and it is peaceful and no pain.  I don't know how he knows probably his many years caring for the likes of me.  He has looked after me since I was 13 I am now 39 so I tend to believe what he says.  I hope that offers some comfort to you, no one will be able to tell you how long she has left for sure not even the drs.  My Dad had terminal cancer and the day he passed away I woke up early and couldn't settle.  I had the most awful feeling in the pit of my stomach and I could sit still.  I put some fuel in my car and went to the hospital and within 10 minutes he had gone, so I think you will know. I wish you both the very best keep doing what you are doing and remember to keep talking to her she can still hear you.

Hi all,

Significant developments since I posted yesterday.  Last night, I called out a paramedic because mum was having trouble passing water.  I thought she might have a bladder infection or something.  They took her into hospital where a scan showed no urine in her bladder.  Blood tests showed GFR now at 3%, hyperkalaemia (6.2) and an INR of 7 - up from 3.8 on Thursday.  They wanted to admit her, but the consultant was very understanding and gave mum some medication to help reduce the potassium, plus some IV antibiotics for the chest infection.  Because of the low kidney function, she's been on low-dosage antibiotics - but they've basically done nothing.  She was prepared to discharge mum after agreeing with me that she would be happier in her own home - which is where mum wanted to be.  So we came home.  I've had prescriptions made up for calcium resonium to bring down the potassium, plus a stronger antibiotic.  That, of course, could hammer the kidneys further - but it's damned if you do, damned if you don't in this circumstance.  Anyway... she's comfortable now.  I'm with her.  I'll be surprised if she gets through the night.  But I'll be here.  Thanks, everyone, for you help.

Thanks again to you all.  It's very reassuring.

I'm an Aspie, so being alone is kind of my default condition.  I'm a black sheep in my family and none of us is really close.  But that's okay.  I have my cat here with me - the Aspies of the non-human animal world!

Mum's gone to bed now and it sounds like she's sleeping.  She knows I'm here, anyway.  I doubt I'll sleep much, but I'm a light sleeper anyway.

Not passed water at all today, nor eaten.  Her kidneys simply aren't producing urine any more.  She's naturally been very hazy because of the toxins in her blood, but she's still aware.  She's not in any pain, which is good.

Minute by minute, hour by hour...

There are lots of us reading this who don,t know what to say, other than- we admire your courage and your care. We are thinking about you both and sending thoughts of support to you both.

Some of us have been in the position of caring for a loved one at the end of life and have wished someone could give us some idea of how long 

Thank you again everyone for your kind comments and generous support.

Last evening, after a reasonable day, mum was taken ill with severe abdominal pain.  She was taken to hospital, where blood tests showed that renal function had virtually stopped, potassium was dangerously high, infection markers were high... basically, that the end had come.  The consultant offered us all (including mum, who still has capacity) two options:  Stay in hospital for palliative treatment... or return home and let nature take its course.

Naturally, we all chose the latter.  Mum was so relieved to get home and get into her own bed.  She slept fitfully, but she slept where she's happiest.

Today, her sister travelled down from Norfolk to see her for the last time.  They're very close.  Only a year apart in age, they were evacuated together during WW2 and they ended up marrying close army pals.  It was a nice day, but mum was barely there for much of it.  We engaged her all the way through as best we could, but she slept for much of the time.

Her GP came out and has put in place some daily IV medication, administered by a district nurse, which will sedate mum and take away her main discomfort: abdominal pain, and excessive need to pass water that isn't there.  It's very much end-of-life treatment, though - and, to be honest, I doubt she'll need it beyond tonight.  I'm waiting now for the nurse to call to administer the first dose.

Mum has gone from being the mum I knew to a ghost in barely 24 hours.  She still knows me, still smiles when she sees me, still responds to my voice.  But she's more gone from me than with me.

I'm sitting here now, in her living room, listening to her sleeping in the next room.  I'll go to her soon, when she calls me - as I know she will.  Her curtains are still open, so that she has some light coming into the room on this cool, but blue and beautiful late spring evening.  This is how she would want it to be.

I'm so glad I'm here.  So grateful.  It's such a rare privilege to share these moments with someone who has loomed larger than anyone or anything in my life.  Her passing will be a loss that can never be filled.  Life will never be the same for me again.

It will go on, though.  Quite how, I'm not yet sure.  But I will find a way through.

Thanks again, everyone.  Your comments and insights have been a great comfort to me.

I sat up with her on Tuesday night, as I said I would.  Her breathing changed around 3am and I thought her time had come.  I held her hand, told her I loved her, told her that she could go if she was ready.  She kept breathing, though.  At 5.30am, she opened her eyes and smiled.  I asked if I could get her a cup of tea, and she said 'That would be lovely.'  I made us both one.  She took a few sips of hers, but that was it.  I spoke to her about the day.  I drew the curtains so she could look out at the sky.  We had a nice time together for those few short hours.

Then, at 8 am, people started ringing and arriving.  Palliative carers, social carers, nurses, doctors, family members - a constant stream throughout the day.  I just wanted to be with her, but there were other people all the time.  In the afternoon, a nurse arrived to fix up a driver to give her continuous small doses of sedatives. A niece arrived whilst she was there, then another.  I got a call to say a night carer would be coming to give me some respite.  But the only respite I really wanted was to be with mum.  Finally, at 7pm, the last person went and the phone stopped ringing.  I went back to mum, who was still just awake, and told her that we were alone at last.  I sat in the chair beside her, listening to her breathing, watching her eyelids flutter.  I talked to her, but she wasn't really responsive.  At 7.21, her breathing stopped.  After a few seconds, it started again - so I jumped up, held her hand, told her I loved her... and then her breathing stopped again for the final time.  I hope she heard me. Oh, how much I hope she heard me.  She knew, anyway.

I called everyone.  Absolutely everyone.  I couldn't stop until everyone knew.  Then I broke.  I couldn't stop.  The sobbing was so hard I thought my heart would stop.  Part of me was wishing it would.  When the funeral directors arrived and couple of hours later to take away, I ran outside and howled into the night.  I was inconsolable.  It took me a long time before I could even go back indoors.  And she was gone.

I stayed there last night.  I covered my duvet with her coats.  I left her bedside light on.  I called out goodnight to her.  I told her to call out if she needed anything.  Somehow, I slept.  Her coats kept me warm.  

It's strange, the things that you do to find comfort in such circumstances. When I got up, I went through the old ritual. I called out to wake her. I asked her if she'd slept well. I made her a cup of tea. Later, I got her hearing aids out and turned them on. I could hear the sound they made, and a faint static crackle. I said 'Can you hear me now?' as I used to when I put them on for her. I even used my mobile to ring her phone - which I then answered, saying 'It's only me. I just rang to see if you are okay.' When I went out, I called 'I won't be long.' When I came back, I called out 'I'm back.'  I asked her what she wanted for lunch. It was the only way I could keep things on a level that I could bear.  I've spoken to her or seen her virtually every day of my 58 years, so I can't stop now.

Tonight, my brother helped me to move back to my flat. One of the hardest things I've ever had to do was to pack my stuff up at mum's bungalow, then leave it. I'll return tomorrow to tidy up and clean around. It's still mum's home, after all. I have to give the Council a month's notice, so there's plenty of time to clear things. We're going to put most of it in storage temporarily - until we feel ready to handle it.

These last 6 months have been the most important of my life. I wouldn't have missed them for the world. I knew there was a reason why I never moved too far away, and why I went into care work. It's as if all of my life has been leading me to this time. I now feel simply empty and without purpose. My flat no longer really feels like my home. Home is where I've just come from. My true, spiritual home. I don't think I'll be able to be involved very much in the clearance. Mum's been there 23 years. It's always felt like coming home when I've gone there. It's an emotional time-bomb now - made bigger by the fact that she has stuff stored in her loft that goes back to my childhood. Dad's stuff, too, from when he died. And things from when I was married, that my ex no longer wanted, and which I didn't have room for and couldn't face anyway. It's as if my entire life was encapsulated in those four small rooms of mum's. And she was there, too. She was always there - as she always has been for me. I can't bear to think of someone else living there.

I got back and unpacked in time to light some candles and hold a small vigil as the clock came to the time of her passing last night. I spoke to her. I told her how beautiful and special she was, and how much I loved her and missed her. I have no idea of knowing whether my message got through, but I like to think so. Daisy's been a little unsettled (she'll miss the bungalow, too, with the big bright windows and the garden to play in, and mum), but whilst I was having my vigil, she jumped up on the chair with me and made a fuss, and was purring loudly. Cats are such sensitive creatures. She keeps making a fuss of me, and she's not usually like that. She knows.

I was pretty broken up during the morning. Every time I spoke to anyone, I was in tears. I went to the doctor's for some sedatives, and broke down in her room. She told me that, without me, mum would have died long ago. That was reassuring. All I wanted to do was keep her alive and happy for as long as I could. The doctor even hugged me afterwards!  Then I spoke to a neighbour of mum's, who sat patiently listening to me spill everything out.  That was a great help, too.

The rest of the day has been spent with formalities: arranging the funeral, sorting out bank accounts. A bit at a time, though. No rush.  I had coffee with my brother and his wife, and they've been hugely supportive.  It all made me feel a little calmer.

This loss is so profound. I know I'll get used to it. But it will be a very long time. And I'll never really get over it. There's been no one else in my life like mum, and there never will be again.  She understood me - deeply and instinctively.  She always listened when others wouldn't.  She was always there when I needed her.

Bless her. I love her so much. She suffered such a lot in her life, and many of the dreams she had ended in tears. She was always putting herself down, too, and never giving herself credit. She had no idea just how special she was, and how many lives she touched. She was talented and bright, and had a spiritual quality that drew people to her. She was one of life's genuine carers. She never judged people. She always looked for the good, instead of the bad. They don't make too many like that.

The loss of such a person is tremendous in any sense. But when it's your own mother... it's incalculable.

Rest easily now, mum. You deserve it. I'll see you again one day - but I'll always be with you anyway, in spirit.

All my love, Kevin

xxx