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Original poster

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

116 replies

FishersGate · 22/12/2022 18:11

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

OP posts:
nancydroo · 22/12/2022 18:15

Home then in-patient hospice. It's harder than you can even imagine. Especially if you need nurses out for morphine injections and there's even a slight delay.

Flamingogirl08 · 22/12/2022 18:16

We did it for Dad and had nurses coming in. Once he stopped eating and was on the morphine it was a matter of days and very very hard. Sending lots of love

jay55 · 22/12/2022 18:17

Just been through this with my sister.
Frankly it was harrowing. Blessedly she didn't last long at the end.
She struggled to eat whilst still with it and would have huge panic attacks and was sick a lot. Then she wasn't with it, and it was worse, the noise of the breathing, wondering if this was the last breath.

I loved my sister beyond measure and we would t have changed it.

But I wouldn't want your young children to witness it. If there are alternative options, hospice care (we didn't have that option) or care home.

cptartapp · 22/12/2022 18:19

I was a district nurse for many years and would never choose to die at home.
Not enough staff, fragmented services, massively reliance on family who are often given unrealistic expectations of professional help they will receive, drugs out of stock, pharmacy delays, wait wait wait for your visit even in an 'emergency' as staff run off their feet with similar cases. And this was several years ago before the current crises.
Just my experience. I'm sure others will have positive experiences.

Honeyroar · 22/12/2022 18:21

Firstly I’m sorry you’re going through this.

We thought about it for my dad a few months ago, but they said there was no overnight options, so you’d be responsible for everything yourself overnight. I think a good hospice is the best option at this point. We found a great one for my dad, but he died just before he was due to go there. (Another plus for a hospice or hospital is that the death certificate gets issued easily).

Pinkjacket22 · 22/12/2022 18:23

We had it for my mum and my sister moved in with her and there were nurses coming in, more frequently towards the end. She did have carers but didn't want them and was often like a badly behaved toddler towards them although she was very well behaved for my sister. We were very fortunate that my sister wasn't working at the time but it was still an enormous strain particularly on her and her kids. She has no regrets though and was glad she was able to give my mum her wishes. My mum had also given up and was severely depressed after a long battle with cancer and had had a stoma etc. my mum hardly spoke towards the end but her little joyful moments were mostly with my sister and her kids. The nurses were amazing and put a hospital bee in my mums house, the family doctor also came by quite frequently. This was in 2015 though and not sure if it would be the same now. Also in Scotland, not sure if that makes a difference. Flowers sending love

Eightiesgirl · 22/12/2022 18:25

If I knew then what I knew now. Please don't do it, it's so much harder than you can begin to imagine. Especially if you are relying on carers and district nurses to help. The district nurses involved in the care of my darling mum made a massive mistake that wouldn't have happened if she'd been in a hospice. It resulted in a major inquiry. I still haven't got over it all 7 years later and wish my darling mum had been in a hospice and I could have been with her as a visitor rather than the terrible panic we had at home at the end.

Badger1970 · 22/12/2022 18:25

My Dad wanted to stay at home (he has liver cancer) but I sent out a distress flare 2 weeks ago to palliative care and he's now in a hospice. He had 4 care visits a day, and my sister and I were juggling full time jobs as well as caring for him in between.

It was too hard. District nurses were unreliable due to workload, equipment got faults and couldn't be replaced quickly. And Dad got to the stage where he wasn't safe alone. The day he was admitted to the hospice was the first time I think my shoulders relaxed in about 4 months.

Missmarplesknittingbuddy · 22/12/2022 18:25

I have been through this with a parent who always said they wanted to come home . We had an end of life plan and they were not tube fed to prolong life . In some ways we were fortunately that we only needed home care for a week . It was hard but glad they were able to die where they wanted .
Sending hugs at this difficult time .

TrixJax · 22/12/2022 18:27

I'm sorry to hear thisFlowers
Even with palliative nurses and carers coming in your DH and SIL will have to take it in turns to stay.
People having end of life care can't really be left on their own so it's really impossible to do without family living in.

NeedToChangeName · 22/12/2022 18:28

cptartapp · 22/12/2022 18:19

I was a district nurse for many years and would never choose to die at home.
Not enough staff, fragmented services, massively reliance on family who are often given unrealistic expectations of professional help they will receive, drugs out of stock, pharmacy delays, wait wait wait for your visit even in an 'emergency' as staff run off their feet with similar cases. And this was several years ago before the current crises.
Just my experience. I'm sure others will have positive experiences.

@cptartapp I don't work in healthcare, but can imagine what you say is true

CrotchetyQuaver · 22/12/2022 18:31

Nursing home or hospice, it's so much nicer for everyone than them slipping away at home. It takes so much pressure off the family. I can't explain the relief when my dad who died 12 days after his cancer diagnosis was scooped up by the hospice for what turned out to be the last 48 hours of his life. I would recommend it to anyone based on our experience. Not least because they have the facilities and know how to deal with this, it was the blind leading the blind when dad was home, he was great at letting me know what he wanted/needed but the hospice was just fabulous, amazing staff/patient ratios and incredible love and kindness towards the individual and their family. I will be forever in their debt.

otherusername · 22/12/2022 18:31

Be sure to ask the ward if she would be eligible for fast track continuing healthcare funding, this could fund either care at home or a nursing home placement.

RoobarbandCustud · 22/12/2022 18:33

It sounds as if she is sufffering with depression - poor appetite, no motivation, feeling hopeless. If this is not treated she will die from it. I think they should ask for urgent referral to a specialist Old Age Psychiatrist. If the Psychiatrist think she is treatable and depression is clouding her views and wishes they could override these and treat anyway. I wish you all the very best.

grubblyplank · 22/12/2022 18:35

We went through this earlier this year with my mum. All she wanted to do when she was lucid was go home and my sister desperately wanted that to happen. They brought in hospice staff who couldn't commit to home care and it would have been up to us to do that. At that point, I was clear that we couldn't do that-nor would she have wanted it. She would have railed against us cleaning and looking after her.

She stayed in the hospital on end of life care and had, what I consider to be, a most peaceful death. Thankfully we all agreed on this course of action.

Sorry you're going through this OP.

Fuuuuuckit · 22/12/2022 18:35

OP sending the hugest hug.

I would also push for hospice/care home support. LPOA takes months to sort, unless it's already in place I would say its too late, I'm sorry.

Roselilly36 · 22/12/2022 18:37

So sorry OP, it’s a really tough time, MIL died at home with the support of end of life nurses and my amazing SIL is also a nurse.

catandcoffee · 22/12/2022 18:38

Totally depends on what the patient wants.
To die at home with family present,or alone in a Hospice.

it's not easy to do the at home bit..... you'll need to do a shift pattern 24 hour care.

Mostly sitting holding the patients hand,talking to them.

It's very emotionally draining but it can be done.

Tinsella · 22/12/2022 18:38

I’ve been through this with a close relative and at the end, hospice care was the kindest, most dignified and comfortable option.

They wanted to come home from hospital when they stopped treatment (cancer), but even a few days at home with carers coming in and out and family taking shifts to care for them was brutal. Physically and emotionally hard for us, and not the more peaceful and comfortable experience my relative had imagined.

Once they were in a hospice, everything felt so peaceful and the care was outstanding.

Disscombobulated · 22/12/2022 18:39

We had my MIL pass at home, it was what she wanted and therefore what we wanted. It was hard, but not impossibly so. We had carers four times a day, but they were often short staffed (although amazing) and so I did much of her personal care. We already all lived together so I guess that was somewhat easier as we didn't need to stay over. The hospital provided a special bed (and other equipment although this was never used as she never left the bed). It was difficult, and if I am honest the time after she passed was hideous, but we are content that we have her the best possible end. Sorry you are going through this.

Original poster
FishersGate · 22/12/2022 18:42

Thank you. Unfortunately mil has stated that she wants to go home and they are trying to follow her wishes. Understandably.

I have tried to encourage on a practical note the downfalls but I don't want to be seen as the bad guy.

Unfortunately her heart is in failure regardless. Mental health team have been in to see her too. It's a horrendous situation especially this time of year

OP posts:
1001Daffodils · 22/12/2022 18:42

End of life care at home is impossibly difficult. We promised dad we would keep him home but the final 3 days had us on our knees even with the superb support from the nursing team.

We agreed that a hospice would be kinder for dad and necessary for us but mercifully he passed away before they could collect him

I don't regret what we went through for him, but I would never recommend others do it and my mother has already made clear it's not something she wants to put us through.

fancyacuppatea · 22/12/2022 18:44

Dr has indicated it could be weeks rather than days.
How many weeks of 12hr shifts will your DH and your SIL be able to share/cope with doing full care for her and sitting with your Mil?

I think either hospice as an inpatient or hospice at home if it's possible.

DMLady · 22/12/2022 18:44

So sorry you’re going through this. I had this with my Dad, who had also given up (and stopped eating), in the summer. In his case, the hospital made sure everything was in place at home before discharging him (he had a hospital bed, for example, and a hoist, a commode etc) and also arranged a team of carers to visit up to four times a day. The NHS covered the cost of this for my Dad, who only lasted about eight days after he was discharged, bless him — but I think after 2/3 weeks, they do a financial assessment to decide whether funding continues or is paid for by the patient/family. I hope your DH can give your MIL the death she wants. (Sorry if that’s a bit too blunt.)

DrMadelineMaxwell · 22/12/2022 18:46

My friend is a nurse. She thought and wanted to do hospice-at-home for her husband when he was ill.

She regrets it and is traumatised by the whole process. Without going into undue details, due to the type of his cancer he was in a lot of pain and they really struggled to keep him pain free.
She says she would never recommend to anyone that they try managing this at home.