So bloody exhausted waiting for someone to die 4

Hi all, I haven’t posted since the last thread.
DM has been in her care home since October - in that time she has had a couple of falls and then a stroke - a clot rather than a bleed. She is now completely bed bound, catheterised and has to be given fluids and food by the carers.
It seems to me that she is simply existing - she had stopped swallowing and chewing solid foods and was pouching her food but is accepting and chewing/seallowing soft foods again.
After her last hospital discharge - about 6 weeks ago her GP phoned me and said she is now on end of life and he has sent the ‘stat’ box (not sure if that’s correct?) to the home.

She looks to be wasting away apart from her tummy which is swollen and her urinary output is low and very dark - but has been like this since discharge from the hospital.

She doesn’t appear to be in any discomfort so I’m hopeful that she isn’t too aware of what’s going on although she is conscious and will say a few words.

This could go on forever couldn’t it? I wish for her sake she could just succumb to an infection and pass away in her sleep. She was always so feisty and opinionated, now she is a frail old woman stuck in a bed.

Sending un mumsnetty hugs to all on this thread

@DaysofHoney I’m so sorry to hear about your Dad. It’s really harrowing when things get to this stage.
My Dad suffered a major stroke and was left paralysed down one side, doubly incontinent and unable to swallow or speak. He was fed via a naso gastric tube but when it was obvious he wasn’t going to improve I refused to have a PEG inserted and requested palliative care only. I had POA and knew my Dad wouldn’t have wanted to live like this. Before his stroke he lived alone and was totally independent. It was a tough decision to make and not one I made lightly. My Dad was never really the same after my Mum died and wanted to be with her. My Dad was admitted to a hospice at my request where he received exemplary care and I was able to stay with him 24/7 until he died.

Fun and games with DF today. He had his shunt adjusted on Monday as his doctor thought it wasn’t relieving enough pressure - his recovery has not been as good as had been hoped for. DM texted me this morning g to say he’d been acting confused about where he was/what’s going on and asked me to call neurology department - she’s very hard of hearing and can’t use the phone herself.

Neurology finally came back to me and said confusion is not normally a symptom after a shunt has been adjusted (headaches and nausea are the standards) and that it sounded like an infection might be the issue (see previous catheter issues) so off I go to call the district nurses.

District nurse took the details and said they would triage DF. 2 hours later DM texts to say someone has been trying to call the house phone - I told the district nurses they couldn’t call the house as DM can’t answer the phone and DF is too confused to know what is going on.

Long story short, the District Nurse turned up at the house and checked dad’s catheter. Said all looked fine, despite the fact he’s barely passing urine and just said to keep an eye on him and call 111 if he gets worse.

So here I am, 200 miles away sending DM details of how she can contact 111 via text if DF gets worse overnight. She’s going to try and get him in to GP tomorrow to see if they’ll do a urine test or something to rule out an infection.

deep breaths

Up until 4 or 5 days ago yes, he was able to make a yes/no indication by pointing to a green tick or Red Cross. Now I can barely rouse him and if I do he can’t stay awake. Yes I do have LPA for his health.

I had a lovely chat with his GP yesterday who feels like she is on our side but we didn’t really discuss withdrawing the PEG. I will follow up with her on it today.

@DaysofHoney do you have health LPA? What does it say in Section 5 about being able to talk to the doctors about withdrawing treatment? Is he entirely beyond being able to communicate his own wishes, or is there a point in the day where you can talk to him and get yes/no responses?

Even if you don't have health LPA, you can still have a serious talk to the medics about what is and isn't in his best interests and why. IME once they are reassured you're not going to accuse them of polishing the patient off, productive, compassionate conversations can be had.

assets.publishing.service.gov.uk/media/5a74e90aed915d3c7d528e6d/LP1H-Create-and-register-your-lasting-power-of-attorney.pdf

This is so interesting- I don’t know why but I don’t even think about there being guidance and case law on this - it just felt like one of those ‘grey areas’ but I will certainly talk to his GP about it. Dad would absolutely not want his prolonging his life, which I expect the large quantity of fortisip he has could be doing.

@DaysofHoney theres a huge amount of case law about food by tube and withdrawing it but I’m not an expert. I think your point that your dad wouldn’t be eating and drinking in this state because he’s not conscious (not purely because of the physical problem with his jaw) is a good one and if I were you I’d make that point to his GP - if he were to rouse and indicate hunger you could always do a feed but that doesn’t sound likely. If the tube is staying in there will be water flushes going in presumably.

Wishing you both peace.

I spoke to dad’s lovely GP tonight who is going to stop all of his meds, thank goodness. We suspect he has an infection related to the return of his cancer. It’s just the peg feeds with fortisip that don’t sit well with me. He wouldn’t be feeding himself even if he could eat and drink at this stage.

Good evening everyone.

Joining this thread having lurked here a bit over the last year. Dad had stage 4 jaw cancer diagnosis 18 months ago and despite successful treatment, has steadily declined with the awful after effects of radiotherapy. His consultant believes the cancer has returned, and dad was discharged from hospital to home with fast track CHC yesterday. One carer 24/7 and one other visiting four times a day. No morphine syringe yet but it’s all in the cupboard ready for district nurses should it be needed.

It is so very very sad and my heart is broken that he is in this sorry state. He is sleeping 24/7, I can barely rouse him, doubly incontinent, immobile, non-verbal - just horrendous. But we got him home and that was his last wish. He managed to mutter ‘wonderful’ when he heard he was going home, that was a week ago and the deterioration has been steady since then.

I don’t know if we have days or weeks left. The GP on the ward suggested days but that was a week ago now and he was still stable enough to go home. I want it to be as swift as possible for him.

I too am so glad we have an assisted dying change coming, keeping someone alive like this is torturous (he is tube fed so a bit of a grey area as to whether to stop feeding him - does anyone have experience of this?).

My condolences go to everyone grieving just now. Grief has been with me for the last year as we’ve watched dad slowly fading away, this limbo part feels the most painful.

Great idea xx

For those of us who are finished waiting, I've made what I hope to be a supportive thread for the tines ahead.

The After

The posts from the recently bereaved really resonate with me and perhaps we should have a separate thread.
Today it’s 19 weeks since my Dad died and I’m struggling with losing both parents within 12 months. Although I wasn’t close to them I miss hearing their stories and chatting with Dad about cricket. I still re-live my Dad’s final days and arranging his funeral, applying for probate and finally putting his house on the market has been hugely stressful. Work has been a distraction although I wish I could have had more time off to recover. The amount of bereavement leave offered by employers is abysmal.

Lovely post @Bouledeneige and I am sorry for your loss.
You are right that we need to have conversations with the older generations when they are still capable of them. Though I think that men are sometimes reluctant to talk about things they've experienced - war particularly. Wish I knew more about my dad and granddad's time in the army & what it was like for them.

That’s a very thoughtful and sad post @Bouledeneige. Just reading back over everyone’s posts from the last few weeks - makes me think how many people are grieving every day. How are you doing @Totallybannanas?

Hi all, I've been following this thread for nearly a year but only posted occasionally - its given me comfort to know how many people go through this and are on the same empathetic path. My father, 95, died 7 weeks ago and I'm still foggy with grief. I've actually found returning to work helpful to keep going. Some days being invited out to see friends seems daunting and others a welcome distraction. Up and down.

My father was in decline since Christmas, hospitalised a couple of times with infections and hallucinating quite a bit. In his last weeks he slept a lot and finally he went into the heavily sedated last gasping days of life. I sat with him for 4 days as he died with incredibly kind support from the care home staff. I was worried it would haunt me how he looked but happily thats faded from my memory. It was gruelling but it felt right. I was with him.

Given how too long he'd lingered I thought it would be a blessing when he went. It was, intellectually, but it still felt overwhelmingly sad. I wasn't prepared for that. And my Saturday morning's spent religiously with him for 9 years since my Mum died seem empty. There are very wistful moments when I realise no more questions or discussions. A photo found in his papers I'd like to ask him about. His life during the war, at university, meeting my Mum. And my chidlhood sealed, long ago, in the days of moon landings, the 3 day week and powercuts. The past is another country.

After his death I was overwhelmed with having to register the death and book the funeral on my own, but the ensuing bickering with siblings over arrangements and admin was horrid. I opted out of all that for my sanity - said that mattered to me and then left it to them. The funeral was a haze on a boiling hot day, feeling fluey and emotional trying to keep my composure to get through the eulogy. But afterwards, being with close family with pizza and drinks sitting out in the garden till late was lovely.

In the weeks after his death I felt like every small mole hill became a mountain, feeling angry or grumpy or over stressed with day to day things. Its up and down the grief, restless and lethargic, wistful and anxious. I know time will ease it. And that I need to start to putting more energy into what follows from here, booking social pleasures and things to look forward to. In the end, I remember him in his healthier days, the wry jokes, discussions, the foibles and affection. And I'm glad that he told me how much he cared for me in the last months as i did him.

@Totallybannanas so sorry to hear this. Honestly if you can accept this is what Dad needs - not wants - you may be able to come to terms with it. If he has CHC funding and there is a place with a bed grab it with both hands and reconcile with yourself he will be safe, catered for and more than anything you can visit him without the stress of being a carer. There comes a time when nursing care is simply needed.

Hi, I'm just joining this thread. My dad has been in the hospice for the the last few weeks. They have stabilised his symptoms and now wanting to discharge. They have applied for CHC funding which ha been accepted. They have also found a nursing home with a bed. The alternative is to send him home with a care package, however the nurse doesn't think he will cope and also thinks it would too much for me. I put forward a few homes but another home has come up not one I have chosen and they want to discharge him to there. I've read and heard the care is good, but I didn't particularly like it when I visited and I doubt dad will. I really don't know what to do as I'm struggling to find a duel nursing home that is not dementia specifically and has a nurse on site and has availability. I don't really want to make this decision but I must decide by tomorrow 😞

@Lobelia123 I’m sorry for your loss, but also understand the feelings of relief.

We have just come to the end of this road. It took my mum 12 years to die. She was diagnosed and given 6-7 years to live - instead she held on and on, fought back against every crisis and setback, refused any therapy that would have helped her hang on to her remaining mobility, was miserable and lost all the good parts of herself that we had loved like her kindness and sense of family. Her whole world shrank to just her and her illness. It broke my father physically, financially and emotionally and my sister has lived under incredible stress and the burden of emotional guilt. I have a different kind of guilt to bear as I was not as close to her and carry over a lot of anger and frustration - a part of myself I dont particularly like. But her suffering is over and its up to us now to seize life and make the most of what we have - it feels in many ways that we were all in limbo waiting for her to inevitably get worse and worse. Its ok to feel relief, its ok to look forward to better days, its ok to forget the last dreadful years and try to remember the person as they once were. Sending strength to all xxx

Extending a sympathetic shoulder to everyone struggling with the fog of grief. If you feel up to it there is a really good podcast called "Griefcast" with Cariad Lloyd (lost her dad to cancer as a teen) where she interviews various celebrities about their own losses and talk about grief and what helps/doesn't help them. I know it sounds depressing but I found it moving and often funny so may be cathartic if you need an outlet.

It's been a couple of months here, and my DB was only able to pick up her ashes yesterday (blaming the Windsor agreement for urn delay).

Grief hits unexpectedly. Watching the tennis, dd graduating, not getting mum a graduation pic, texts from Mu aunt. Waiting for death was exhausting. Grieving is all consuming

I'm so sorry Potterhead, I was on this thread a lot at the beginning of the year and found it a great help.

I'm more than 4 months on but since the memorial event at the end of April, I've not been able to get myself together.

It's really been a struggle, and after 13+ years of caring for my mum I'm really struggling in this new world.

However, I do believe that time will help. And a few months is very early days.

So allow yourself to struggle. The most important thing is to treat yourself kindly and not beat yourself up.

In the early days I went to the cinema 2-3 times a week just to not be in the house, and also for a bit of non invasive company. Taking yourself to a cafe for a couple of hours could be an idea.

Sending love ❤️

I'm so sorry. You're so raw still, there's no quick fix. Personally I found the build up really difficult then the day was a little less so . Take care of you the way your loved one would have.

It's 2 months tomorrow. I turned 40 on my own on Sunday (the first of all the firsts). The house feels so echoy and cold. I don't really want to be in it. Where do I go from here? Yesterday I thought how do I do this for the rest of my life. It's a different kind of struggle to the before.

I used to feel like I'd never graduate from this thread! Thoughts with everyone going through it. It's not unreasonable to want it to be over.