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

Realistically it takes two adults to stay at home with the EOL individual. One can pop out for a break or a walk at times, pop to shop etc, but as always, afraid that the person will be gone at that point.

Our experience was better than many, after 6 months of being in hospitals which are under staffed, poorly run, making mistakes, etc etc. When someone just wants to go home to pass on peacefully, it’s the best thing…. However, it’s a 2 person job, and don’t rely on any health visitors or nurses at this point.

Wishing you all the best in the coming weeks whatever you decide.

I think a lot of people request to die at home without thinking about what that really means. I wonder if someone from a hospice could maybe speak to your MiL. You're in a difficult spot, I imagine you'll need to take a step back with this. I would reiterate to your husband that it's ok to change the decision at a later date.

It can be done, with good support from on call nurses and carers. This was my MIL's choice 10 years ago. However, it convinced me that I absolutely DON'T want to die at home - please someone drag me to a hospital or hospice where there are permanent staff.

Also (sorry!) just to be clear, when I said I hoped your DH could give your MIL the death she wants, I didn’t necessarily mean at home. Just generally…

We had my Dad home, although the hospital advised against it. He was eating though and taking his medication ok. They said if we needed help, it would be there, we just needed to call, when in fact you left messages and nobody ever got back to us. We had carers in 4 times a day, but as he was ok being left we reduced this to 3 times a day, which suited better. He lived another 3 months and we are glad we did this for him, although my brother who lived with him did most of the care. We had good carers who would come out in the middle of the night when needed. We had a bed, commode and walking frame and wheelchair delivered. It’s a hard decision to make if your DM does not want to go home, but you certainly won’t get 24 hour care at home, but she obviously would in a hospice.

I took care of my Mum at home for three months through to the end from an aggressive cancer. I moved home from abroad to do it with a 2 year old DD and DH and I had to be apart for all that time because he couldn't get time off work. I was working part time from home.

It was very hard. It's a lot more physical help than you might realise. Helping to go to the toilet and helping to shower. It's also very emotionally distressing because you see everything and watch the decline 24 hours a day which isn't quite as intense if a relative is in hospital.

For the last month we had district nurses and local hospice nurses visiting 2-3 times a day and they took over the things like washing etc - a special bed was brought in, and we had other equipment etc.

It might be that we were very lucky with our health authority but the medical support was fantastic - our GP came over to the house once a week and talked to all of us. The hospice and district nurses were amazing.

I'm glad I did it because I was able to keep her out of the hospital which was her wish, and I was there at the end with her.

It was still a fairly traumatic experience - I had to compartmentalize a lot because I was trying to protect my DD from my grief, she was potty training as well, and still nursing at night so I felt completely done in by the end.

The hospice who cared for my mum at the end as an inpatient had also been involved throughout her illness. They support in the community for the most part, but she wanted to go in for her last week. She felt safer there- she was in the hands of professionals, and she knew that we didn't have to take on that responsibility. I am so bloody grateful to the hospice and have been fundraising for them since. They are incredible.

Thank you. She is effectively bed bound. Stoma and catheter currently. Ng tube for nutrients but unsure whether that will be withdrawn. She is not in a lot of pain from what we have been told. Her heart coupled with not eating and moving has made her recovery bone existent.

I don't think mil is aware of the involvement coming home but perhaps palliative care might give her the options.

Of course it isn't my decision but have said we must all talk about the options DH me SIL and bil. There is no other family and we all have young children.

I am not sure DH will cope with it or effectively being her carer.
So sorry for all of your losses 😔

If you can go with hospice they are so helpful after the person passes away and a lot easier than doing it at home.

My mum died at a hospice and they were brilliant.

My mother came home to die and it was the best decision for her. We basically did up a rota of who would be there and when. It was during covid so only had help with medication and for the last three days from a nurse once mam went on the pump. I looked after medications and dealt with the public health nurse and did four overnights a week with my mam while my aunts helped with the other nights. It was hard but I'm glad we did what she wanted. Her passing was as peaceful as it could have been given the circumstances.

We are just going through this with my dad and are aiming to keep him at home as long as he can be kept comfortably there. He has Alzheimers and a dicky heart/kidneys and is in no pain though, just sleeping and barely eating. A slow fade.

It sounds like she already has a lot of medical needs with the catheter, stoma bag and tube feeding. A hospice would be much better equipped to deal with this. Don't underestimate the difficulty of full time care and having a family and job on top.

Totally depends on what the patient wants.

To die at home with family present,or alone in a Hospice.

No reason for those to be the either/or options. Family can be present even if in a hospice.

My DF died at home and we took turns to sit with him. I would sometimes fall asleep alongside him and I suffered night terrors for many months after that. I would wake with my DH and think he was my DF.
My DM was also very difficult to be with as she was very bitter about the whole situation ( My DF was youngish) and was very aggressive to us.
My DF was emaciated yet his body did not give up. In the end his family doctor sent to a hospital for a drug with the side effect of it stopping a heart. He "recovered" from hat and sent for another more serious one.

Such a personal decision. Of course, home care could turn into hospice care if it gets too much.
My aunt died at home recently. She wanted to be at home, but it was all getting a bit much (we are hours away and were struggling with overnight care), so a hospice place was arranged for the following Wednesday.
She died peacefully - and commenting on how the room was filled with a beautiful light- the day before, with my dad (her brother) with her.

DF died at home. This must be close to 30 years ago now. He had cancer and then developed pneumonia in his last few days. He had already stopped eating and drank very little.

DM, DB1 and I split his care between us. He didnt want to go into a hospice (there werent many around then anyway). Across the last few days I think a MacMillan nurse came in once.

DF had been fitted with a syringe driver for morphine and the GP came in to administer additional morphine in the last couple of days.

As you can see from the above, the memory is etched clearly but it wasnt horrific. It was exhausting. When he eventually died there was a sense of relief.

12 years ago my DGM died at home, she was supported by carers and district nurses.. She had a syringe driver and I don't remember their being any pain at all. It can be done but you need the family to be doing it , my grandma died the night she came home from hospital they fitted her with the syringe driver before she left. It was a very peaceful death.

I kept my mum at home until the last 2 weeks then she went to hospice. It really was the hardest thing I have ever done in my life. I had nurses in twice a day, the rest of the medication I did myself. I also had Marie Curie nurses stay 3 nights a week to give me some rest but I never slept ever because you're worried something might happen in the night. Even with all the support in the world it's harder than you could never imagine and I was in a constant state of exhaustion. I'd do it again but I might have opted for hospice care earlier because it really is impossibly hard. Sorry you are going through this x

We had 24/7 private live in carers for mum, age UK x 4 a day and family input. Hospice at home at the end. It was really hard and i couldn't have done it without the private carers who were a real safety net. Big love OP it's a tough road to tread.

I know I am in a very small minority but I did this for DH earlier this year (he had cancer then had a massive stroke that meant he lost his speech, his sight in one eye and lost the use of his right side), it was hard and at times scary but I don't think it would've been any better in a hospice. We had carers in place (that weren't always great but did do the bits that DH didn't want me to do) and we had some night sits from Marie Curie, the hospice were always contactable and the District Nurses were great too. We had a baby and a 20 month old at the time (we're foster carers, everyone was onboard with the decision to move DH home from hospital) and they were supposed to go to a respite carer for the very end but it came quicker than anyone expected and they were in the house when DH died (albeit asleep in bed). The night of his death was peaceful once the DNs had been and adjusted the meds in his syringe driver and I am glad I was able to do that one last thing for him.

Sorry if I’ve misunderstood but has she actually been given a terminal diagnosis? If she hasn’t , a hospice won’t take her (yet).
If she - I worked in a hospice and agree if she would agree to go there it would be the best solution. Some hospices do offer ‘hospice at home’. Could you look into that?

I would only bring her home when she was nearing the end. I strongly suspect the staff turned up my DGMs syringe driver as she quickly went into a coma state and died a few hours after getting home. I don't believe it was chance and I thank them for that.

In an ideal world everyone should die where the wish but the reality today is that we have an NHS and social care system that is beyond broken and that has a huge impact on what can be provided to private homes. Every hospital wants to discharge patients but cannot for the simple reason there are no Home Care staff. Care agencies are struggling to maintain current contracts and are not taking on any new patients as they are so short staffed. A friend recently contacted all the care agencies in her area to provide private care for her elderly Mother, every agency told her the same thing - it does not matter whether you are social services, private patient or royalty we do not have the staff.
Treat with huge scepticism anything you are promised - the hospital will be trying to free up a bed. They will offer plenty but likely deliver little and family will be left to cope as best they can.

I am sorry you are going through this.

In feb 2021 (covid times) my husbands great Aunt (her only living relative) was end of life care. We knew it was her wish to be at home and given the visiting restrictions on hospitals at the time we were even more keen to make it work.

The GP was not interested and would send out an ambulance when we called- who would try and convince us to agree for her to go to hospital. The only time a doctor visited was to certify the death. Fortunately she had the financial means for us to fund 24 hour carers, who were supported by occasional district nurse visits as well as my husband. She ended up passing in a matter of days, very peacefully with a carer by her side as my husband couldn't get there in time.

I would say its a hard slog. There is minimal outside support and it really is down to you to provide around the clock care or source it. Saying that, I believe in supporting and respecting a person's wish as far as possible. It also gave us peace that we could be with her during her final days, instead of being restricted by the covid rules.

MIL died at home nearly 18 months ago. She had bowel cancer and flatly refused to leave her home. What that effectively meant was that DH and SIL instantly became carers. She had 4 times a day carers but would constantly ring DH (we lived closest) needing the toilet, a drink, turn over the tv etc. They both had to cover nights whilst working full time. Honestly it pretty much broke both of them. Also, when MIL passed we had to wait for the doctor to come and certify the death, then call the funeral directors and they arranged the private ambulance but we had to wait nearly 3 hours for it to arrive, then watch her being taken out of the house in a black body bag. That was a sight I will never never forget. Although it was what MIL wanted the whole experience was just soul destroying.....and not one I would ever put my loved ones through.