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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To say no to weekend leave from hospice

284 replies

GoGoJasonWaterfalls · 28/05/2023 19:25

DM is in a hospice with stage four terminal lung cancer. I try to get up to see her every few weeks and as she hasn't seen my DD since Feb, I decided I would take her up next weekend as it's the end of half term. We could stay at Mums, and go visit her Friday, Saturday and Sunday for a few hours at a time but in between go to visit parks, museums etc... DM is currently not mobile, relies on a wheelchair and uses a commode. She's also very frail, weak and at a high risk of infection. She wants to ask the hospice for weekend release next weekend and I just don't think I can do it. It would mean moving a bed into the living room, helping her in and out of the wheelchair (alone) at several locations, bringing home a commode. Manoeuvring her on and off it (in front of five year old). It would also mean me and DD can't go out for the day after visiting her as she can't be left alone due to not being able to walk. I feel like an awful awful daughter but would I be unreasonable to say we maybe need to do it when she's a bit stronger and it's just me without DD??

OP posts:
realityhack · 28/05/2023 21:57

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The hospice may not allow it if it’s not safe and she needs 2 to transfer. What part of that don’t you understand? Anyone who thinks you can just rustle up extra carers for three days is delusional. There are palliative patients in hospital unable to go home to due due to lack of care staff.

So ignorant.

determinedtomakethiswork · 28/05/2023 21:57

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That is a very unfair thing to say. You're making it sound as though she can't be bothered when actually it's impossible to keep her mum safe at home.

feralunderclass · 28/05/2023 21:57

OP I didn't mean that as an attack, but yes I was taken back if I'm honest. I only read the first 2 pages though. It's a really horrible situation for you to be in, but it sounded as if you were fitting your mum into your day out. You specifically said if your DM was at home that you couldn't take your dd out for the day. Yes, I thought that was odd.

openstop · 28/05/2023 21:58

Wishing you the absolute best OP, I am so sorry, this must be difficult. Your story has moved me. I shall hold you in my thoughts tonight.

openstop · 28/05/2023 21:59

@EllaView Your post moved me. You are right. These places are set up to allow you to just be who you are to each other.

feralunderclass · 28/05/2023 21:59

And FWIW I don't think it's unreasonable at all for you not to want her to come home when you can't physically manage it. I was with you until you mentioned it inferring with your day trips.

HoneybeesAndBluebells · 28/05/2023 22:00

@feralunderclass

It's not for a day it would be for 3 days and I take it you have never had a five year old.
They would go crazy and you would too trying to keep them sane and happy locked inside for 3 days.
Imagine trying to lift your mother on a commode when your dd runs in and sees her gran knickers around her ankles.
Where is the dignity in that.

ModeWeasel · 28/05/2023 22:01

This:

I'd try to make this work for my dying mother. Can you bring some carers in?

If it can’t be done it can’t be done, but I would be looking for every way to make it possible.

What would you want your daughter to do for you?
What will you look back and be happy with when your mum is gone?

Sunsetmom · 28/05/2023 22:04

The hospice can’t force your DM to stay if she has capacity to make the decision for herself, understands the risks etc however the hospice, NHS or adult social care may be able to provide support to facilitate this in a safe and dignified way. Meaning you wouldn’t have to provide any assistance. I’m sure the hospice have come across this many times before. I think it’s about being open and transparent with your DM about your thoughts and feelings on the situation. Is there anywhere local to the hospice, a cafe etc which you could perhaps take you DM to in a wheelchair for a short period? Does the hospice have nice grounds to take her for a walk round? Sometimes this is enough for the person just to be out of that environment?

openstop · 28/05/2023 22:05

feralunderclass · 28/05/2023 21:57

OP I didn't mean that as an attack, but yes I was taken back if I'm honest. I only read the first 2 pages though. It's a really horrible situation for you to be in, but it sounded as if you were fitting your mum into your day out. You specifically said if your DM was at home that you couldn't take your dd out for the day. Yes, I thought that was odd.

Its not odd at all

Original poster
GoGoJasonWaterfalls · 28/05/2023 22:05

ModeWeasel · 28/05/2023 22:01

This:

I'd try to make this work for my dying mother. Can you bring some carers in?

If it can’t be done it can’t be done, but I would be looking for every way to make it possible.

What would you want your daughter to do for you?
What will you look back and be happy with when your mum is gone?

No, I can't. Not with DD. More than happy more than happy to do this without her being there and maybe we can facilitate this when I visit next but that's too much for me to handle alone.

OP posts:
openstop · 28/05/2023 22:06

ModeWeasel · 28/05/2023 22:01

This:

I'd try to make this work for my dying mother. Can you bring some carers in?

If it can’t be done it can’t be done, but I would be looking for every way to make it possible.

What would you want your daughter to do for you?
What will you look back and be happy with when your mum is gone?

Are you trying to guilt trip OP?

EllaView · 28/05/2023 22:06

ModeWeasel · 28/05/2023 22:01

This:

I'd try to make this work for my dying mother. Can you bring some carers in?

If it can’t be done it can’t be done, but I would be looking for every way to make it possible.

What would you want your daughter to do for you?
What will you look back and be happy with when your mum is gone?

Would you want your daughter to be worried about how she was going to move you from chair to commode? Would you want her to spend her time frantic with worry that she was being selfish when all she wants is to hold your hand and be your daughter? Would you not rather that she brings her love, her memories and her energy to where you are?

Beachbreak2411 · 28/05/2023 22:06

The poor woman wants to go HOME for a weekend with you. If it’s difficult.. suck it up! I can’t imagine denying my mum this no matter how hard!!

determinedtomakethiswork · 28/05/2023 22:08

Beachbreak2411 · 28/05/2023 22:06

The poor woman wants to go HOME for a weekend with you. If it’s difficult.. suck it up! I can’t imagine denying my mum this no matter how hard!!

Stop being so fucking nasty and read the thread and put yourself in the position of a woman whose mother is dying.

Some of the responses on here are so disgusting. People should be ashamed of themselves.

feralunderclass · 28/05/2023 22:09

@HoneybeesAndBluebells Ive got 3 dc, one of them is severely disabled and nearly an adult now, so I'm more than aware of trying to balance a young child's needs with those of someone who requires 24/7 care. I think a 5 year old is aware enough to be told that granny is very ill and mummy will be very busy tending to her, so you'll have to keep busy with colouring books/ipad/toys etc whilst I'm caring for you. Trips to the museum are not necessary IMO. This visit isn't a holiday.
I also think we try to shield children far too much from illness and subsequent death. If the granny is OK with her grandchild seeing her being lifted from wheelchair to bed to commode etc (and even with her pants around her ankles) then why do we need to "protect" children from this? It's an inevitable part of life for many of us and can be dealt with and normalized in a child appropriate way. That's very much a side issue though.

realityhack · 28/05/2023 22:09

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Original poster
GoGoJasonWaterfalls · 28/05/2023 22:10

Beachbreak2411 · 28/05/2023 22:06

The poor woman wants to go HOME for a weekend with you. If it’s difficult.. suck it up! I can’t imagine denying my mum this no matter how hard!!

Yes, that's it. I'm just not trying hard enough. It takes two qualified nurses in the hospice but if I really loved her, I'd do it myself alone, is that it?

OP posts:
Highdaysandholidays1 · 28/05/2023 22:11

@Beachbreak2411 have you read the thread? have you had your own experience of caring single-handedly for a dying person in a home environment? with a child there too? you can't just get carers at a few days notice, there's not enough of them, there are so many people in hospital right now who can't leave as there's no-one to care for them!

Fancy speaking to someone whose mum is actively dying in a hospice like that. The Op's concerns are that her five-year-old will be too boisterous and that she can't do the commode/doesn't have the equipment to care for her mother, not that it will spoil her holiday.

I'm shocked by Mumsnet tonight. Op if I were you I'd take the good advice you have had and get off Mumsnet. Some people are just not sending good things into this world.

EllaView · 28/05/2023 22:12

Highdaysandholidays1 · 28/05/2023 22:11

@Beachbreak2411 have you read the thread? have you had your own experience of caring single-handedly for a dying person in a home environment? with a child there too? you can't just get carers at a few days notice, there's not enough of them, there are so many people in hospital right now who can't leave as there's no-one to care for them!

Fancy speaking to someone whose mum is actively dying in a hospice like that. The Op's concerns are that her five-year-old will be too boisterous and that she can't do the commode/doesn't have the equipment to care for her mother, not that it will spoil her holiday.

I'm shocked by Mumsnet tonight. Op if I were you I'd take the good advice you have had and get off Mumsnet. Some people are just not sending good things into this world.

A hundred times this

HoneybeesAndBluebells · 28/05/2023 22:12

@feralunderclass

Good for you but not everyone is equipped to be a carer especially if you have no experience of it yourself.
If op can't get support there is no way she should be doing it alone, there would be a high likelihood she would injure her mother and provide inadequate care.

Hardbackwriter · 28/05/2023 22:14

Highdaysandholidays1 · 28/05/2023 21:28

I'd also say wanting to 'go home' is the thing that pretty much every old person in hospital and hospice says endlessly. What they mean is I wish I was well enough to go home, I wish I weren't ill or dying, I wish I could just go home and forget all about it. If you can arrange a trip, great, but your mum must be very ill to be in a hospice (most don't do long stays these days, they will move you back to a care home) and it might not be possible. It not, think about how you could bring home to her- perhaps music, perhaps an ornament, having her own clothes (they can be cut at the back so they can still be worn even if they are in bed), a blanket, anything she associates with home.

I think this is a really good post. It is very unlikely that going home will bring her the pleasure she imagines. She will still be just as ill there and will be less comfortable. She wants to go home and for it to be like it was before, but that's not possible.

I can't believe how ignorant and unpleasant some of the responses you're getting are, OP. I'm so sorry that you're getting this at such a vulnerable and awful time.

Shodan · 28/05/2023 22:14

Beachbreak2411 · 28/05/2023 22:06

The poor woman wants to go HOME for a weekend with you. If it’s difficult.. suck it up! I can’t imagine denying my mum this no matter how hard!!

Quite clearly you are of very limited imagination then.

And empathy, apparently.

OP you can't do it. It just isn't feasible. And FWIW, I didn't see 'flippant' in your opening post. I heard exhaustion, guilt, misery and fear. I've been there, and it's awful.

PPs have made very good, sympathetic suggestions for realistic solutions to the problem.

Despite what some people are saying on here (and shame on them), it sounds like you are doing your absolute best in a very sad situation.

adrem · 28/05/2023 22:15

I agreed with you @feralunderclass as a daughter and only relative of several hospice cared for elderly relatives.
I have been there several times including my mum and dad.

I agreed that prioritising others is difficult when you have kids. But it’s just something that has to be sorted for loved ones that don’t have much longer.

OP has posted for opinions and MNHQ are taking down all opinions that don’t agree with OPs modus operandi. So…..What’s the point of the post, the post is asking for opinions.

I do really hope OP is OK with everything. Personally I wish I’d done more which is why I posted having had lots of prior experience and lived to regret that I didn’t do more, that I didn’t really pull out all the stops.

I will say we organised for my mum to get home. She was bed bound, on a catheter, could not walk. We set up the hospital bed in the living room. The hospice got her home and we paid for one nurse on shift ( 3/day) for one day then Macmillan nurses took over. She was only back home for a few days.
My godfather and FIL we also got home and Macmillan nurses visited several times a day. Again it’s a catheter so there’s no need to try to lift them to a toilet and the nurses do all the washing and personal care.

Id talk to the hospice OP and give the Macmillan nurses a call. Or private I& possible.

Please don’t take down lived experiences MNHQ……just because they don’t agree with OP.

feralunderclass · 28/05/2023 22:15

@HoneybeesAndBluebells I agree 100% that OP shouldn't bring her home if she cannot manage. My only issue was her saying that she wouldn't be able to take her daughter out for the day.