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End of Life Care

(25 Posts)
ExD Thu 13-Aug-20 20:30:19

My daughter's MIL is to be put on end of life care in her own home.
What does this involve? How much input will be expected from my daughter and her husband? Will there be live-in nurses and overnight attendance?
MIL is in hospital at present but 'the bed' is coming tomorrow and presumably MIL will arrive shortly afterwards. They have been given a leaflet but nothing is explained clearly.
DD and SIL both work full time. They feel they have been abandoned and the hospital is getting 'rid of' the old lady who has proved to be a difficult patient.
How can I reassure them?

biba70 Thu 13-Aug-20 20:33:57

Did she live with them before? Surely the decision can't have been imposed on them?

Marydoll Thu 13-Aug-20 20:41:55

There must have been a multidisciplinary meeting to discuss this and look at all the options. That's what happened in my mother's situation.
I had three children, was teaching full time and said I couldn't do it all on my on my own.
Surely it wasn't just foisted on them, without checking out the home situation?

Charleygirl5 Thu 13-Aug-20 21:03:43

Something has to be sorted asap before the lady is discharged because once she is out of hospital it will be almost impossible to get it reversed.

It does not sound as though the family were consulted- has it been assumed that "someone" will be at home to care for her?

fiorentina51 Thu 13-Aug-20 21:16:01

My brother spent his last few months of life with us in our home. For most of that time he was mobile and pretty independent though of course he needed care regarding meds and food etc.
He gradually became weaker and became bedridden for the last 5 days before he died.
District nurses came regularly and "the bed" was delivered a few days before the end.
I had support from my brilliant husband, Macmillan Cancer care who helped with the business of benefits and other areas of support and a Marie Curie volunteer who sat with my brother at night so we could get some sleep. The latter was when lapsed into a coma about 4 days before he died.
Carers came in twice a day over the last week, to aid with personal care.
He died peacefully with his loved ones around him just as he/we wanted.
We were retired and it was our decision to offer to care for him. Please don't feel railroaded into doing it. If you're working it's a big ask and you need to consider your own well being.
Let the hospital know your situation and be honest.
If you do go ahead, get support in place. We found Macmillan very helpful.
I wish you well at this difficult time.

fiorentina51 Thu 13-Aug-20 21:18:55

Sorry just realised it's your DDs MIL. My advice should be aimed at her.

Madgran77 Thu 13-Aug-20 21:28:36

If they have been told that she has been "put on bed of life care" then there will be a support package in place. But that would never be done without discussion with relatives and establishing home situation. If they remain unclear they need to proactively request a meeting with whoever is assigned to establish the care package, ask questions, discuss options and what is available. They need to be clear about home situation etc and their own limitations too

kittylester Thu 13-Aug-20 21:38:39

End of life care can go on for a long time.

MissAdventure Thu 13-Aug-20 21:45:51

I can only speak from my own experience and say it was beyond abysmal for us.

I hope you have a much better experience.

Kamiso Thu 13-Aug-20 22:33:40

My friend’s experience was dire as well. Nothing like the impression that was given when the decision was under discussion. It was 20 years ago but I doubt matters have improved.

My brother’s experience was far better as his wife was a very experienced carer and my other SIL nursed in the local hospice so he was very well looked after.

To some extent the size and layout of your house and willingness to have carers coming and going needs to be considered, plus the likely prognosis’s s to whether it’s likely to be weeks, months or even years.

merlotgran Thu 13-Aug-20 22:44:01

I hope you have more success with Macmillan than we did.

While DD was in hospital we were assured there would be Macmillan support when she returned home.

Zilch! angry

Illte Thu 13-Aug-20 22:51:22

I wouldn't give Macmillan the dirt off my shoes.

They should inform the hospital that they will not be at her home to receive her and that they will not be caring for her. Nobody can be discharged without an appropriate care package in place so this should stop it in its tracks.

The lady in question may have said something like my son and his wife will care for me.

gillybob Thu 13-Aug-20 22:59:02

ExD just over 4 years ago my mum made the bravest decision to discontinue her treatment and come home from a long spell in hospital. She had bravely fought a battle with bone cancer and had been on 3 times weekly Kidney Dialysis for over 10 years . It got to the point where enough was really enough .

Once her decision was made, we, as a family had no choice but to respect her wishes and she was brought home . A hospital bed was arranged for her and an acute care (end of life team ) was put in place . She was in no pain as a morphine cassette was set up for her . Either my sister or I were there almost every minute of the days although she did have carers looking after her personal needs . She lived for 8 days (5 longer than expected ) and we spent our time watching films, listening to favourite music and drinking hot chocolate (a drink she was previously denied ) . I brought my grandchildren to see her and they laughed and played and squabbled as they always did and she was so happy to see them . My little grandson was 6 at the time and he sat in her bed and talked about heaven and asked if she was about to meet baby Jesus (even though we are not a religious family) it broke my heart but my mum smiled and answered “yes darling I think I am” .

She never lost consciousness, And just passed away in her sleep with my dad lying close beside her

People might criticise our way of doing things but I know in my heart of hearts it was the right way for us (and for my mum) . She was only my 73 . Bless her heart .

Illte Thu 13-Aug-20 23:06:23

I can't think of anything that anyone could criticise gillybob.

A good end to a good life 💐

Madgran77 Sat 15-Aug-20 08:44:50

Have they considered Hospice care?

morethan2 Sun 16-Aug-20 08:04:44

I do hope things go well for your daughters mother in law. We had a terrible time when our DiL was at the end of her terminal illness. I wouldn’t wish the experience on my worst enemy. It was torture for her, torture for those who loved her and for those of us who were forced to watch. It traumatised everyone involved. She did spend her last week in a hospice and died peacefully. I just hope when it’s my turn I drop dead quickly with no fuss. To those of you who’ve had a similar experience as us I send my sincere and heartfelt condolences and hope we can all find a way of living with the distressing memories. sad

Namsnanny Sun 16-Aug-20 10:49:38

Thankyou for saying that morethan thanks.
I will never get over the hopelessness and helplessness of the situation I found my self and my Father I.
I cannot say anything positive about caring for my father at the end.
Sorry.

Namsnanny Sun 16-Aug-20 10:50:38

Father in

Judy54 Sun 16-Aug-20 14:28:33

Marydoll is right there should be a multidisciplinary meeting involving the family and a package of care put in place before a patient is discharged. Merlotgran and Illte so sad to hear of your experiences with Macmillan mine were the complete opposite. Our Macmillan Nurse was amazing and caring not just to the patient but to the family as well, the support we received from her was outstanding and she helped us so much.

tidyskatemum Sun 16-Aug-20 15:00:31

There is no way the hospital should be sending anyone home for end of life care without ensuring there is someone there all the time. When my dad was dying we were given the option of choosing a nursing home, hospice or caring for him at home. Mum wanted him home so I moved in with her for the last 2 weeks of his life as she couldn’t possibly have coped by herself. Palliative careers came twice a day, district nurses every day to administer his morphine driver and they were always on call if he was in any distress. Dad slipped away very peacefully without pain in his own bed.
The hospital just want the bed. Don’t let them railroad you!

SueDonim Sun 16-Aug-20 16:58:18

Morethan2 I am so sorry to learn that your DiL has passed away. flowers I’ve followed your story on here but wasn’t aware that the end had come for her. I am also sorry that it was so distressing for you all. How dreadful. sad

Wrt the OP, I don’t know about EOL care at home but the care my sister received in a nursing home was horrific. At one time she was lying on a mattress on the floor, not even in a bed. Nor was she given her medications because the staff said they were too scared to administer them. hmmangry

My niece managed to get her into a hospice, where she died less than 24hrs later. It haunts me, though, even though I didn’t witness her last two weeks.

Illte Sun 16-Aug-20 17:40:54

Judy54, are you sure it was Macmillan and not Marie Curie? I've known several people who praised Macmillan nursing care when it was actually the other

Macmillan nurses generally see their role as providing emotional support and directing people to other services.

I would have found it a lot more emotionally supportive if she hadn't refused to help me change the bedding saying it wasn't her role to help with that kind of thing.

Judy54 Mon 17-Aug-20 11:58:36

Yes Illte it was definitely Macmillan and not Marie Curie and as I said earlier She was very kind and caring and we could not have managed without her.

ExD Mon 17-Aug-20 15:58:21

Well, the bed has arrived but nothing else seems to be in place.
It seems to me (I live 200 miles away) that the two sons are not showing a united front to the hospital staff.
The elder son (my SIL) has been doing most of the caring and arrangement making, but younger son has arrived on the scene like a whirlwind, full of enthusiasm and 'good ideas' about putting 'packages' in place - then clearing off home and leaving it all to my SIL and daughter.
This sounds like sour grapes, but to my mind the hospital are listening to the younger son who is a forceful personality and is very good looking and cheerful. Whereas my SIL is (lets face it) no oil painting and frankly worn out and weary after 18 months of running round after his mother, including being woken up in the night by phone calls because she's had a bad dream or feels dizzy. She's too ill for that now, but you get the picture.
He seems to have run out of steam, and the hospital must be so pleased to have this new energetic brother making rash promises of full time round the clock care, not realising that the care he's promising is that of my daughter and SIL - not on his own behalf.
My daughter and SIL must learn to stand up to him but frankly they are tired out, and both working full time (still).
The lady lives in her own flat, not with them as their house is tiny. (and they have cats, which she hates).
And the younger brother is so full of energy and charm!

Daddima Mon 17-Aug-20 16:30:58

In answer to your question, ExD, I don’t think you can reassure them, as you don’t know what local services are like, so I’d suggest they talk to the hospital and/or social services.