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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think this is barbaric?

97 replies

BippityBoppityBloop · 11/01/2022 23:23

Not sure if barbaric is the right word, but I'm really angry and upset.
My MIL has cancer, she is 75, it has spread and she's gradually gone downhill. She has had mcmillan nurses going to her home but she has decided enough is enough and she wants to die. She has requested to go into a hospice.
This is fine of course and totally her choice. I've heard they are amazing places.
But, big but! There are strictly no visitors, so DH and his sister will have to leave her at the door and will most probably never see her again.
I just can't get my head around it. DH has been strong for his sister but tonight he broke down😢
How can this be happening?

OP posts:
Wrongkindofovercoat · 12/01/2022 08:00

What is it about the hospice care that she will get that she can't get at home

The short answer is 24hr care @ChateauMargaux. If she chooses to stay at home, she would be entitled to 4 care visits a day of approx an hour at a time, which leaves 20 hours to be provided by relatives or friends. The other issue is symptom control, if she lives out in the sticks, it could be an hour before anyone can get to her, in the hospice there is someone available all the time.

FreshandLively · 12/01/2022 08:04

DH died of Cancer during the second lockdown. It was really really hard. While he was in hospital and dying but not considered end of life, there were no visitors at all. That was three months, no one.

Once he was transferred to the hospice though, they were allowing 2 named visitors. They had to be consistent , so hard for families with lots of siblings, but there were visitors after testing.

DH came home to die, but I'm sure for the final days they were more relaxed.

Talk to the nurse in charge at the Hospice. We found there was quite a lot of wriggle room in the published rules (unlike at hospital which really was barbaric)

PeonyAndSweetpea · 12/01/2022 08:10

I'm sorry your family are going through this, losing a loved one is never easy.

Whilst I can understand your DH and DSIL being upset, your post and the majority of replies are focussing on them and their feelings. What about your DMIL (their DM) feelings and wants?

Maybe she has chosen this Hospice because of the no visitor rule, or she's told them that is the case as she wants control over her dying days and may feel she has more dignity if her children remember her as she is now, not on her deathbed.

I think you all need a good honest discussion but I think that ultimately you have to respect your mother in laws wish to die her death in the way of her choosing.

Roselilly36 · 12/01/2022 08:12

I agree this is barbaric. So sorry you are going through this as a family, it’s heartbreaking Flowers

howdiditcometothis666 · 12/01/2022 08:19

It is barbaric. We experienced something similar during the first lockdown although the medical staff ended up breaking the rules and in our case probably saved a life. And they wonder why there has been an increase of people dying at home?

LadyPenelope68 · 12/01/2022 08:22

Are you sure your DH has the correct info? As legally you are allowed visit hospitals/hospices for end of life care. It sounds more likely that the hospice currently has an outbreak which means they may have to restrict visiting.

IDidntFloatUpTheLaganInABubble · 12/01/2022 08:23

I had a friend in the same position two weeks ago and the hospice would let one person in to visit at a time as long as they had pre booked the appointment.

Seems awful to leave her alone if she wants her children with her and they want to be with her.

gallumph · 12/01/2022 08:25

That is barbaric and when a loved one is ill, you might not have the energy and time to fight rules like that. I hope you can find a solution.

FreshandLively · 12/01/2022 08:27

@LadyPenelope68

Are you sure your DH has the correct info? As legally you are allowed visit hospitals/hospices for end of life care. It sounds more likely that the hospice currently has an outbreak which means they may have to restrict visiting.
It's what counts as end of life though. They don't mean the last weeks they mean the last hours. And yes, it is barbaric, there would have been far more value in being able to hold DH's hand when he knew he was there and could speak to us.
Fuckitydoodah · 12/01/2022 08:29

That seems unnecessarily cruel. I just can't see the issue if visitors are made to do LFT before the visit, wear masks, sanitise hands on entry and don't go to any other parts of the building. She's going to die anyway. How heartbreaking to do so without seeing your loved ones. I would go to pieces if this was my parent. I really hope there's been a mistake.

Squeezyhug · 12/01/2022 08:31

Barbaric is the correct word!

Most nhs is one visitor per patient per day but anyone ‘end of life’ is allowed significantly more.
Double check there hasn’t been a misunderstanding or try find another hospice.Flowers

Squeezyhug · 12/01/2022 08:34

It’s part of the emotional/ psychologically care of a person and if it really is no visitors at all, surely that’s a huge failing in care Confused

Magissa · 12/01/2022 08:35

I haven't read the full thread but would Hospice At home be something to consider? My cousin's husband had them and they were amazing. Not sure if they are in all areas but worth looking?

toomuchlaundry · 12/01/2022 08:35

Where do people live where there are numerous hospices, telling OP to find another one?

I am sorry about your MIL. Hopefully, DH can clarify the position with the hospice

Russelhobskettle · 12/01/2022 08:38

I hope that you discover this isn't the case when you phone this am. My friend's partner was in a McMillan hospice recently and she was able to visit him. It was a little bit more restricted than normal, but she could see him and was able to sit with him for many hours when they knew his time was nearly over.

Unsure33 · 12/01/2022 08:39

My mum is on end of life care and we are allowed to visit . We do LFT and wear mask gloves and apron .

This was also the case in hospital.

LadyPenelope68 · 12/01/2022 08:49

@FreshandLively
It's what counts as end of life though. They don't mean the last weeks they mean the last hours. And yes, it is barbaric, there would have been far more value in being able to hold DH's hand when he knew he was there and could speak to us.
I didn’t realise that, that definitely is truly barbaric. I totally agree there would have been more value for ALL for you to have been there for your DH at that time. I’m sorry for your loss.

My mum passed away very suddenly and unexpectedly a few weeks ago. She went to A&E by ambulance after collapsing and the only Resus bed was in a Covid area. When I arrived at A&E, I had to wait for them to find the “visitor” equipment (the headset with the respirator thing) before I was allowed into Resus to see her. By the time they’d found it, she’d passed away. ☹️

Porcupineintherough · 12/01/2022 09:03

@toomuchlaundry I live in South Yorkshire and there are 4 within 15 miles of me.

Worldgonecrazy · 12/01/2022 09:10

When my mum died at the end of last year, the hospice interpreted the rules in the most humane way possible.

NewYearNewMinty · 12/01/2022 09:14

@FreshandLively @LadyPenelope68

Planning these visiting arrangements should proceed from the assumption that visits are enabled in the final months and weeks of life – not just the final days or hours – albeit recognising that these timelines can be difficult to determine with accuracy.

This is the government advice which does state it shouldn't just apply to the last few hours.

The problem is a lot of care homes and hospices don't understand this.

My dad had been on 'end of life' care for a year when he transferred to a care home, and because he'd held on for so long the staff didn't consider he was at a stage where more flexibility was required.

We finally found out the information above and we're given permission to visit daily, but he passed away just 3 days later.

Had I fought my corner earlier I could have had seven weeks of extra visiting time.

NewYearNewMinty · 12/01/2022 09:15

@LadyPenelope68

I'm so sorry you went through that Flowers

cobblers123 · 12/01/2022 09:15

My dad is in a care home and recently speaking to one of the staff, I was told that EOL care at the home allows family unlimited access to their relative.

LadyPenelope68 · 12/01/2022 09:33

@NewYearNewMinty
I’m so sorry you went through that with your Father as well. It’s truly barbaric how the guidance has impacted on end of life issues.

MarieIVanArkleStinks · 12/01/2022 09:38

How awful. I'm so sorry about your MiL.

theremustonlybeone · 12/01/2022 09:55

A hospice is not a care home.

Hospices allows visitors and even during lockdwon they allowed two named visitors. So i think you need to check with the hospice what there visiting arrangements are.