End of life care at home ? Is it too much ?

[FishersGate]

Mil health has deteriorated to the extent that Dr's have now asked DH and SIL about the next steps from leaving hospital . She hasn't been eating for over 4 weeks, her mobility has gone. Dr's and physio have stated her mental health is very poor and she's given up. She has a heart condition however last week Dr's were saying that with nutrition and mobility she could go home. She has cancer but not aggressive and has a stoma following op.

However mentally she keeps stating,she can't do it, she's had enough etc refusing to eat, doesn't want to eat. Won't move in bed or try to move out of bed with assistance. She is being tube fed nutrients and is on oxygen as fluid on her lungs. In part due to lack of mobility. She is now very frail and spends large amounts of time sleeping. Dr has stated there is no recovery from this. She isn't really awake much when visiting. She has been able to state her wishes.

SIL wants her to come home with care. Dr has indicated it could be weeks rather than days.

Obviously DH is struggling as despite MIL being given a shorter lease of life he was hoping she may have made home mobile etc. He is also struggling to accept mil has in part made some decision to 'give up'. She will be requiring 24 hour care in her state. I would assume we would look at this?

Can anyone advise how this has worked for them and their immediate family we have young children too.

I don't think DH and SIL understandably have thought about the practicalities of caring at home and the impact on them.

I don't think SIL or DH have lasting power of attorney either does this need to be sorted ?

Thank you

It will be very tough to have her at home especially at this time of year . DH and SIL will have to be with her all the time. Carers will come in several times a day and district nurses will come once daily.

There may be times when she has to wait for drugs and help - it will be very difficult for your family. I would honestly suggest a hospice as the best solution.

I would recommend hospice EOL care, not at home.

We cared for my MIL until she died just after her 99th birthday. She was doubly incontinent, had dementia, and couldn't do anything for herself. It was tough, but also very rewarding and we are both pleased that we were able to help her to the end. She stopped eating and drinking in her last month, and I must say, the help we received from the district nurse team, social services and the local hospice could not be faulted. We had all the end of life drugs in case we needed them but we didn't need to use them. We had carers in 4 times a day, we were offered, but didn't use, a sitting service so we could have a day out which made us feel that we were being looked after. We had a hospital bed, hoist and special sheets given to help us move her, but she was past being moved about. We were told to leave the tv on, and carry on round her as normal, which we both thought was bizarre, but we carried on. As I said, it was tough, she was with us for over 4 years in total, but with hindsight looking after her was a privilege and I am so glad that we looked after her.

We have just done this for dad. He had palliative care at home for the last two months of his life. At the end he had three visits from the carers and one or two from the district nurse every day. For the last three weeks at least one of us (there are four of us) was there with mum. It was tough, but manageable. Ultimately it was worth it because dad was at home and with mum when he died. It will be tough to do with small children but not impossible.

I found with Mum who was in a care home until her death that when she became immobile she needed two-hourly care to move her on her bed so that she didn't develop pressure sores which I believe are extremely painful. She had become unable to move herself as she approached her decline.

It is such a difficult position to be in. I am very sorry for you as a family. Hospice please unless you have a nursing home that think they can manage - please be aware that a care home may not have the facilities your mother needs. It needs to be nursing home or hospice.

Regarding immobility, this is such an important state in the loved one's life. Once we have immobility in the frame, unless you have made the decision to choose somewhere as a care home with resident physiotherapy specialists, that's sort of it as you then approach pressure sore worries and after several weeks the will, the prospects, the hope decline. Not enough has been done to investigate the tipping point that occurs after long term hospitalisation, long term bed confinement, doctors and nurses know the muscles have declined and whatever the original driver for the hospital stay the prognosis changes significantly. Even if the patient doesn't know how limited their options are, care givers and loved ones should be aware of this one-way street. It wasn't what you asked but if I could have my time again with mum I would have locked the door of her care home and dragged her to her feet for some exercise - even though I daresay I might have hurt her doing it. It was our last chance and I would have dealt with it - your kind mama is beyond this I recognise but it is important to me to put it out there for anyone else reading the thread with similar challenges. Once mobility is lost without intervention, it is the end of a final opportunity.

she isn't dying because she isn't eating.

she isn't eating because she's dying.

sorry, op

hospice or hospice at home would be the kindest thing for her and those closely around her.

We did it with my father 18 months ago, and it worked very well. BUT in our case the grandchildren were young adults, and helped with some of the care. My siblings and I couldn't have done it if we'd also been caring for young children.

We had carers coming in four times a day, they were brilliant. The NHS supplied us with lots of stuff as it became necessary - commode, shower seat, zimmer, hospital bed, cot sides for the hospital bed. Then they collected everything the day after Dad died, so we didn't have to look at them.

Dad was under palliative care, which had a special phone number, so when we phoned for a doctor, one came.

I should add, in our case, Dad had terminal cancer.

Bear in mind that hospice beds can be like gold dust. It doesn't always work than if and when it becomes too much you can just make a call and have her transferred. There may be a significant wait for a bed.

I’m so sorry you’re going through this @FishersGate💐

I’m 32 and have unfortunately done end of life care at home twice for my grandparents. It’s such a personal decision - and never an easy one to make. They both wished to go pass at home and I promised I’d do my best to make sure they were able to do that. Thankfully we had wonderful carers coming in 4x per day and district nurses/palliative care nurses coming in. And I had a hugely supportive workplace who allowed me to condense holidays and take leave in order to do what I needed to do.

I can’t say that it was easy. In fact, it’s the hardest thing I’ve ever done. They were my best friends. I was literally at their bedsides morning, noon and night. But I’m forever thankful that I was able to help them pass in the way that they wanted to. Selfishly, it also brought me some peace at the end knowing that I’d fulfilled their wishes to the best of my ability and that I got to to be with them in their final moments. I can’t imagine it having been any other way.
I have no experience of hospice care but from all the replies it sounds like it’s another really good option to look into.

The answer varies hugely based on variables too numerous to mention.

My DH wanted to die at home, and to be honest the idea made my stomach lurch. But we had great support from the local district nurses, the care services, Occupational therapy, Macmillan, and Marie Curie nurses. And it was good. Really good. That's nothing I'd change.

But my DH's pain was managed well, I had my DDs (early 20s) also living at home, and my DH was the most wonderful and stoical patient. And it was a few years ago, and the NHS wasn't in the terrible situation that it is now.

People saying that hospice is the answer, probably don't have a clue about the shortage of hospice places. Our local hospices can only take people in those very last three or four days, and even then most don't get a bed. Certainly my DH wouldn't have. Macmillan were in constant touch with all three in my DH's last week, just in case circumstances changed to make it the better option. But none of them could have taken him.
OP is talking about weeks. That's very unlikely to be an option.

We did 24 hour care for my mum with zero social care support. We had medical visits once a day in the last week. We only managed this as she only managed 2 weeks once bedbound (a blessing), there are 3 of us, it was the summer holidays so two of us were off work.

I don't know if I could go it again. After two weeks we were really struggling. Mum wanted to be at home but I don't think it occurred to her that we would have to do the intimate care.

So sorry your going through this. I think people underestimate how hard it is caring for someone who is approaching the end of life at home.
Carers 3-4 times per day, district nurse planned visits but heavily rely on family members to contact them if any deterioration, if they're in pain/agitated etc and if they can't take anything orally you will have to wait for x 2 district nurses/palliative care nurses to attend which won't be straight away.
Then you have to think about personal care, if the stoma bag bursts in between carers would you or family members be happy to do this or wait hours for carers to come.
Can you find a nice care home where she will be looked after, in a homely environment, nurses and carers on hand to keep her comfortable and 24 hour visiting available.
I work in the community as a nurse and cover palliative care over night, I also work in a nursing home for extra shifts and know which option I would choose.

Ex-nurse. Exactly as @cptartapp says.

So sorry OP.

Thank you all. Palliative team have been contacted.

I had DH at home for months before he died. He was completely bedbound and it took two adults to change him. We had 4 visits a day organised by Hospice at Home but a lot of the care fell to me and our sons. It was tough. Really bloody tough, but there's no way I'd do it differently if I had my time over.

*For 3 months. I should also add that the end when it came was very peaceful and although it wasn't perfect, the care he got was much better than he'd had when he was "bed blocking" in hospital.

Thank you. So many other people have told me this. Unfortunately in trying to have a conversation with DH about this, it invariably makes me the bad guy. Mil has always stated that she doesn't want a nursing home. Until palliative care team have spoken to her and DH SIL about the options it's very difficult. I 🤔 the NG tube would be removed in palliative situation. I dont think dh SIL could manage the care side and medical needs catheter bag stoma etc. I have suggested perhaps looking at private 24 hour care of this the option

There are no other optioms for caring only SIL and dh. Mil has no family etc. I am working with young children so can offer limited support.

I am sorry for your loss 😥.
The hospital are keen to discharge understandably but want to make sure dh dil are making the correct decision and not rushed

@Ohchristmastree311 "Selfishly, it also brought me some peace at the end knowing that I’d fulfilled their wishes to the best of my ability and that I got to to be with them in their final moments. I can’t imagine it having been any other way."

How could it be selfish you kind woman. It just isn't possible for most.

Wishing OP a bearable outcome in dark days.

This happened with my lovely MIL but she unexpectedly died within a week of being home. The hospice team were amazing and it was actually very peaceful but obviously this is not the case for everyone.

I've been through this this year with a much beloved family member.
I was very scared that there would be a delay in administering pain medication if he was at home. After much soul searching, and many many tears, we opted for fast track continuing healthcare (which is reviewed after six weeks but unlikely to be withdrawn) and he went to the palliative care unit of a nursing home less than two minutes away from us.
We spent every day there, just being with him, talking to him and around him, watching his favourite telly programmes, listening to his best music. Everything else was done for us. And I treasure those days when we had the chance to say and do everything we needed to.
We didn't need the review after six weeks ☹️

I looked after my mum for 3 months at home when she was dying of cancer, and stayed with her in the hospice the last month of her life. The 3 months at home got harder and harder, the personal care was the hardest and I’m saying that as a qualified nurse, that it is so much harder when you are caring for a relative. I’m glad I did it but it wrecked my health in the end. I stayed in the hospice with her because she was so frightened, it was awful to see. 😥

We did this for my mother in law. She wanted to go to the hospice, but there were no beds. We cared for her for 2 long weeks before she passed.

It's really hard physical, mentally and emotionally. It's alot of pressure on you and you're constantly on edge, waiting for the next change and wondering what it means. We all felt as if we weren't doing enough, if she'd had been in a hospice we would have hand someone on hand all the time for reassurance.

I found going to collect the DNR paperwork from the doctors especially hard, which we wouldn't have to do if she'd had been in hospital or a hospice.

The nurses came in 3 times a day and towards the end, we had someone come in to sit with her at night. They were all lovely and supportive, but so busy, that they couldn't stay for long.

Towards the end when she couldn't get out of bed and had no control over her bladder it was hard, we couldn't move her on our own and change her and it wasn't always possible for the nurses to come back to help change her. She screamed in pain when we moved her, but we couldn't leave her in her own urine. They did eventually fit her with a catheter.

Waiting for all the equipment to be collected was hard too, every time you walked into the room, it was another painful reminder.

Thinking of you all. 🌹

I agree and the bed just left like that. I remember seeing strands of my DF's hair on the pillow and sniffing it. This was 27 years ago. For some reason my last sentence on my previous post is missing. It was " it was horrific". Nurse swept the top of the dressing table clear of all meds - I think we all know that they do hasten the end when it is like this - if you are lucky.