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

if they cant cope withe personal care then being at home prob wont be an option at the end

my dm died at home and i dont tink my dad slept much towards the end but he didnt want her gong anywhere else

@OldAssPensioner its so difficult isnt it. I was not prepared for what happened after MIL passed. We just didnt know what we were supposed to do, who to call etc. DH & SIL were obviously heartbroken and fell apart so me & BIL felt like we had to be the 'practical' ones. Then we had all of the equipment left in the house, hospital bed, hoist, commode etc and no one seemed to want to collect any of it. I take my hat off to anyone whos going through or has been through it.

Just been through this with my FIL his wish was to be at home. In the end he was released home for four days in pain with little to no help from an incredibly overstretched district team trying their hardest until there was a medical emergency and he was bluelighted back to hospital where he passed a few days later. It was distressing, exhausting and beyond traumatising for all involved in his care for the last weeks. Family turned carers unable to just be loving wife/daughter/son. We will carry the scars of that period forever.

It’s not possible to comment on whether home care will work out or not, as someone else said, there are so many variables. However I’d really encourage you to help the family reframe the phrase’ has given up’ - which has connotations of ‘not really trying’- to ‘ is ready to die’ or ‘accepts that her life is ending’.

Death is our only certainty, she is best placed to know her own body. My FIL died recently from a similar combination of heart failure and cancer. Once he was told he was at the end of his life and given appropriate meds he became very calm and said his goodbyes and died within 48 hours.

I hesitate to say that anyone can choose when to die but it may be that if she does get home and has appropriate EOL care she may feel ready to go quite quickly. Not easy for you and your family though. If they can afford a 24 hour nurse it could work well.

Best wishes.

Thank you. She has openly told dh and SIL she has given up and has nothing left to give. She doesn't want to fight any more. It's a very difficult situation for them but I think some acceptance is needed that they cannot keep trying to force feed her or get her to move -this has been happening. She has obviously been very frightened and dh and SIL take emotional brunt. She won't really acknowledge them in hospital now and is very blunt with them when she does. It's an extremely difficult situation.

I'm so sorry you're going through this.

My dad, sister & I cared for my mum at home last year. She had bone cancer and was bed bound for 4 months before she passed. We kind of felt we had to do it, she was in a hospice for a while but they still had very strict covid visiting, which meant only 2 nominated people were allowed to visit for 1 hour each per day. It broke all our hearts, so we brought her home.

It was tough. My sister moved in with mum and dad, I still had young children at home to care for.

There's a lot that has made me very angry and traumatised, but it was best for mum. You put their needs above yours.

I wish you all the best with whatever you decide x

I'm an acute nurse and do a lot of palliative care. I wouldn't ever promise to take in family for end of life care but would judge it on the situation. If they had an oxygen requirement like your MIL I wouldn't take them home, shortness of breath can be pretty distressing for the patient and family and I wouldn't want to wait half an hour for a DN to come to help me make her more comfortable. Although a stoma and catheter are a little more complex it does make things a little easier because she wouldn't need to get up.

I think it can be lovely to have someone at home in their own surroundings but even as a trained nurse I'd be reluctant as the rest of the fam wouldn't be able to cope with personal care...if all involved wouldn't cope then I think it would be a lot harder. There's a limited number of DNs on out of hours and if they are at another house dealing with am emergency there couldn't be a potential wait for support, could you cope with that?

We were told my dad had weeks and we brought him home.

Absolutely best thing we could have done and none of us will ever regret it.

We were told weeks when he left hospital but in the end it was about 10 days.

Couldn't be more positive about the care he received from my mum and the district/macmillan nurses. We got respite care overnight for the last few nights.

Even once he was on so much morphine that he was sedated we could sit and read to him and talk to him.

We were all eith him when he died and yes it was difficult to watch but this was a man who had spent his life putting other people first. He deserved to spend his last few days at home with the people he loved. Not with strangers

It takes a long time to organise POA & mil would need to be in sound mind. Mine took over a year & I had to get my mp to intervene.

Sending unmumsnetty hugs.

Four years ago my dad was at end of life and my mum (ex geriatric nurse) wanted to bring him home. She was devastated when social services said no as they couldn’t arrange specialist equipment in time, as he was literally being discharged the next day. Luckily we managed to get him into the lovely residential home where he had gone for respite before deteriorating. He should have gone to a nursing home but this was allowed as a stop gap whilst they found a place.

This turned out to the be best decision, as all the hard work was taken care of whilst we enjoyed quality time with Dad. I honestly don’t think we would have coped. Dad’s GP was not supportive but the GP linked to the home was amazing. He visited daily to avoid having to have a post mortem and had district nurses keeping him pain free. As a result the end was much more positive than if he had come home.

One thing worth checking out before you start pushing for a nursing home is which ònes, if any locally, have beds available. We've been looking for my father and the answer right now is none (well none where I'd feel safe putting him). Which is one of the reasons we are opting for care at home, though he is on waiting lists for a couple.

@FishersGate I am horrified to see you mention forced feeding. It is natural for someone who is dying for their body to start to shut down.

Although a stoma and catheter are a little more complex

To be honest, I think my DH's stoma made the personal care element easier. It's much 'tidier' and less personally invasive and embarrassing for both parties than wiping your family member's bottom. And of course far less uncomfortable and painful than them having to move to accommodate a bedpan or commode.

Sorry not actively force feeding but encouragement to eat. It has been very difficult to do this for a couple of weeks. Of course no one is force feeding her

Don't do this.

Can you really take on the responsibility of 24 hour care and of handling pain management for weeks?

What will you do when your MIL is about to go? what if it happens in the middle of the night? will you be able to deal with it or will you go into a panic and call an ambulance so that she will end up dying in hospital anyway?

Carers can only be around so much, most of the time the family will be responsible.

Be realistic. You won't be able to do this and manage looking after young kids as well.

A slightly different perspective, but during my childhood, I'd been round several relatives which were on end of life care. My nan, I don't remember it, I was only 7. I remember her, but only snapshots of that final decline.

Then my great aunt when i was 12. We moved in for some nights at the end. I remember I got my second period when there, I remember lifting drinks to her mouth, and later, just moistening her lips with water. I remember the increasing gaps between breaths. I want there when she died but that was more luck than anything.

Then my Grandad when i was 15/16 and doing GCSE's. Once the exams were over I joined mum in living with him for the final weeks. Another long, drawn out cancer death. Sad, but I was glad to be able to muck in, and be there.

I don't back on those times with trauma, but with love and pride that we were there for them. The scary images faded (being young probably helped with that) and I'm left with the memories of them alive and really have to think to remember the bad times. It also meant I spent hours by their beds spending time with them that i now consider precious.

It may or may not be doable, or for the best to bring her home, but your kids may cope with it better than you imagine. I'm grateful I had the opportunity to help them, and also to sit with my mum and support her.

If you did bring her home, would there be the option of moving her to a hospice if it was too much? Potentially allowing her to have her final Christmas at home, even if that's not where she eventually dies?

Best of luck for whatever you decide

A colleagues father had hospice at home care and said it was awful. It was really hard to keep on top of pain and the nurses were so busy. It felt like they’d robbed him of his dignity and he’d always been such a strong chap.

My Grandmother had end of life care at her own home. In my opinion, from working in a care home that provides end of life care, as long as she isn’t ever alone (and I don’t mean someone physically in the same room constantly), that there is always someone present in the house then this is the best option. My Grandmother had community carers from the local council
coming in to do the personal care calls morning, afternoon and night, to re-position and change her bedding / incontinent product, make sure she was nice and clean. The community nurses would call in as often as required (honestly can’t remember how often but definitely any time there were any concerns and to check on the syringe driver). And family would just pop in every so often and to make sure she received oral care. When she appeared to be at the very end someone was always sitting with her, by then there were lots of us around, my mum, my grandad, my brother, her brother’s, but not all at once!

But, this kind of care can be painful for some to watch so sometimes a care home is the best option. There are always staff around and I can assure you when someone is end of life and nearing at the end they are checked very regularly, and carers will even sit by their side and hold their hand at times if family isn’t there. Obviously I can’t speak of every care home but seeing how the majority are where I work I would hope that most carers are like that! And in the home I worked family were allowed 24/7 and were provided with food and drinks and support if needed.

If you decide to look after your loved one at home,please please ask your GP or district nurse to refer you to Marie Curie.We can provide overnight care and support for you and your family.It's a fabulous service and is free to use.I have nursed many in end of life care.It is an honour and privilege to support a family and loved one in these difficult circumstances .

I cared for DF when he was end of life with cancer. My DS helped and we had carers in four times a day and a hospice nurse twice a week to give me a break .I literally moved in with my DF whilst my DH looked after our children. My DF was in the same village so it wasn't any distance. I have been a community carer for a very long time so the care side was no problem to me
But the Financial as I took time off work and the mental side of it was very tough.

We were lucky we had amazing DN's and gp and the hospice nurses where angels .They not only supported my DF but were there for me and my DS.End of life care at home was tough. I don't regret doing it but I would not do it again it .I am so sorry you are going through this OP 💐.My advice would be they need to be ready and understand how they will cope .

My dad died in a hospice when I was in my early 20’s. I had helped my mum look after him for the 12 months previous to this, at home, but it got to the stage where we were worried we wouldn’t be able to manage his pain. The staff in the hospice were absolutely incredible, so kind, not just to my dad but to our whole family.

I think people choose to die at home because it’s where they think they’ll be most comfortable, but it’s not if they or the people around them are stressed, panicking, and in pain. Hospices remove those elements. It’s still heartbreaking, obviously. But I can’t tell you the relief of knowing my dad’s medical needs were being taken care of, so we could concentrate on just being with him.

Another one who has cared for a parent at home when they were EOL. Just don’t underestimate how exhausted you will get even with the help given by district nurses and carers. I remember it took a little while for the help to kick in but when it did was wonderful. A PP has mentioned the body bag afterwards, that is unbelievably awful and not the way I would want anyone to see their loved one leave the house.

came I would say however dying at home was what my parent wanted and I am glad they got their wish. It was an absolute privilege to share those last few weeks, painful at times to watch and experience but thankfully the more awful memories do fade.

I will always be grateful to the Marie Curie nurses who came in on a few nights so I could get some much needed sleep.

My mum was in a care home at the end of her life. It was the best of all possible worlds. There were carers who knew her on tap 24/7, her personal care was taken care of, a trained nurse was also available all the time to regulate her medication and manage her pain. I sat with her for her last eight days and I was looked after as well. It would have been a nightmare if she’d been at home. As it was it was as bearable as it could have been. I’m still so grateful to those amazing people who supported us.

One of my best mates cared for her DF at home, as he did not want to go to the hospice and they obviously wanted to respect his wishes. But I can't tell you how incredibly traumatic and stressful it was for her and one of her other siblings who both took on the care 24/7 for the last couple of weeks of his life. And that was with the help of wonderful hospice staff visiting regularly to support. The rest of the family were too upset to do anything to help. The hospice where they live is absolutely incredible, but I'm sure if they were to do it all again they wouldn't have it any other way. It is undoubtedly a very tough call....

My mum died at home. Took weeks, and was awful. I wouldn’t wish it on my worst enemy to look after a loved one like this and I will never inflict it on my family.