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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:
AdvertisementBoard · 30/05/2023 18:31

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Read the thread and educate yourself

AdvertisementBoard · 30/05/2023 18:32

GoGoJasonWaterfalls · 30/05/2023 14:16

Just a quick update. I spoke to the hospice yesterday and after a lot of back and forth, they have agreed that the whole weekend is not feasible. They will spend this week helping her gain some strength in her legs so she can better use the twist/turn thing which helps get her from bed to wheelchair. We will practice on Friday and if I feel comfortable, she can come home for a few hours. The hospice has an arrangement with a local cafe and will order in afternoon tea for us three to have in the courtyard and I can also take her for a drive and to the park with DD but only if we can both navigate getting from the car into the wheelchair. Thank you to all of you for your support and kind words. And even those who weren't quite so kind, you actually helped me to see that taking a rational and non emotional approach to this difficult situation was best for all involved.

What a fabulous compromise. Let us know how it turns out. Wishing you love and strength.

MatildaTheCat · 30/05/2023 18:32

@GoGoJasonWaterfalls that sounds like a great plan and much more achievable. I will think of you and keep my fingers crossed it goes to plan- and if not that you’ll have a lovely visit anyway. These things are unpredictable.

@KarmaStar I assume you haven’t read the full thread. What a shameful and horrid reply to a woman who is losing her DM and came here with a dilemma.

Blossomtoes · 30/05/2023 18:33

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What part of the hospice agreed that the whole weekend is not feasible. are you failing to understand?

I’m so pleased you’ve found a way to give your mum a lovely weekend in a way that’s safe and comfortable for her @GoGoJasonWaterfalls and that the hospice has worked with you to achieve that.

johnnydeppsslipper · 30/05/2023 19:00

@GoGoJasonWaterfalls

I'm really pleased to see
Your update and that the hospice are helping to facilitate some quality time for you all.

I'm also glad that your not going to have a full weekend of doing the impossible on your own whilst also looking after the emotional and physical needs of a 5 year old.

People commenting how they can't believe you aren't having her for a whole weekend with you on your own without help are assholes and they clearly have never had to care alone or facilitate the whole scenario.

Do what works safely and comfortably for all of you.

Christ @KarmaStar what the hell is actually wrong with you???
You are being so so rude it's actually unreal.

olympicsrock · 30/05/2023 19:04

Your plan sounds perfect. Don’t feel guilty for a second. Love and strength .

Nannydoodles · 30/05/2023 19:28

The plan sounds perfect and manageable.
I can only imagine some of the awful comments on this thread have been made by people who have never been in a similar position and have no idea of the realities.
I have and it is so hard without being made to feel guilty, but you couldn’t cope alone.
Also I believe your Mum wouldn’t enjoy it once she was home, it wouldn’t be as she is probably hoping it would be.
in my case I know my loved one was glad to be back at the hospice where they felt safe despite me doing everything I possibly could - a private home just can’t provide what a hospice can unless you have trained helpers to assist.
Dont feel guilty, just enjoy your time together in the way that’s right for you all.

bloodywhitecat · 30/05/2023 19:37

I hope you get to have your special time together this weekend Flowers

Original poster
GoGoJasonWaterfalls · 30/05/2023 21:31

@KarmaStar - no my dear, the hospice absolutely will fucking not. She is an in-patient and while she is incredibly poorly, she is not currently end of life. She is not coming home to die. She wants to come home for three days and then return. But they have a duty of care to ensure she can be looked after safely and, in her current state, that cannot be done by just me. You understand that right, that I'm actually a pretty decent person and not being a twat because I just can't be arsed? Every other week I set off from home at 4am to get to my Mums house for 8am in order to do enough hours to take three hours off at lunch to visit her. I then work for another few hours, visit her again and set off for home at 8pm, getting back at midnight ready to do a full days work. I'm her next of kin, I'm on calls with doctors weekly assessing her condition, how much the cancer is progressing, at what point we remove care (this was what we faced in February when she was in hospital). While holding down a stressful full time job. And trying to be a good Mum/friend/wife. I'm absolutely fucking exhausted. Read that back a few times then ask yourself if your post was fair.

OP posts:
HoneybeesAndBluebells · 30/05/2023 21:33

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I think yours is actually the most disgusting post I've read anywhere, ever.

Also well done OP that sounds like a great compromise for all involved.

FrostyFifi · 30/05/2023 23:04

@KarmaStar Are you going to come back and apologise?

Hairyfairy01 · 30/05/2023 23:11

OP, you are an amazing daughter. Those giving you stuck simply have no idea about what is involved. Follow the guidance of the hospice, they will have sadly experienced this a million times.

BiddyPop · 30/05/2023 23:14

OP I am so pleased to see your update and the nice things you have planned to do with both your DM and DD. Hopefully most, if not all, will work out on this visit. But if not, you have a better idea of what is feasible and practical in your circumstances. Ignore the petty people who don't get your true situation and all the effort that you are making to do things in your DM's best interests.

Wishing you a lovely weekend, and the easiest path possible for you all as you go forward.

Canthave2manycats · 30/05/2023 23:25

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What an utterly disgusting, insensitive post.

You will be fortunate if you never go through this hell.

Catsmere · 30/05/2023 23:57

OP, great compromise, hope it all goes well.

SaltyCrisps · 31/05/2023 20:27

Just a suggestion that might make things easier, OP. When my recently deceased elderly aunt became confined to a wheelchair we were able to take her out by ordering a very large taxi - not a black cab: more of a small van. The wheelchair with my aunt, my sister and I could all fit into the taxi, and so there was no need for us to try to get our aunt in/out of a car (which wouldn't have been possible). It's just a thought Flowers

JADS · 31/05/2023 21:21

Lovely update, Op. You sound like a lovely daughter and mum. Hope you all have a great weekend. Love the idea of the afternoon tea.

Original poster
GoGoJasonWaterfalls · 01/06/2023 09:40

SaltyCrisps · 31/05/2023 20:27

Just a suggestion that might make things easier, OP. When my recently deceased elderly aunt became confined to a wheelchair we were able to take her out by ordering a very large taxi - not a black cab: more of a small van. The wheelchair with my aunt, my sister and I could all fit into the taxi, and so there was no need for us to try to get our aunt in/out of a car (which wouldn't have been possible). It's just a thought Flowers

I'd never thought of this! What a great idea. I'm going to look into wheelchair friendly taxis now. Thank you!

OP posts:
lailamaria · 01/06/2023 10:43

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Beamur · 01/06/2023 11:27

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I think she's very wise indeed to shield her daughter from this.
My DD experienced something similar when she was 8. It was honest but I can't deny - it was traumatic for her. Both to see her much loved Granny struggling and her Mum incredibly stressed. She's had issues with anxiety, germ phobia and a fear of death ever since. I thought we were doing the right thing - and we were, for my Mum, but if I could do it again I absolutely would shield my daughter a great deal more.

lemonchiffonpie · 01/06/2023 11:30

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Because she's five.

Robotik · 01/06/2023 11:33

Hi, I think this was a moot point anyway as the hospice agreed it isn’t safe (which I agree with) and I’m sorry you’ve been made to feel awful by some previous posters, who clearly lack compassion fgs.
what about taking her a walk in a wheelchair for an hour if you can around the hospice too or even in a park if there’s one nearby? I hope you find some comfort somehow I’m so sorry you’re going through this.

Beamur · 01/06/2023 11:37

This is what we do with MIL. DH bought a wheelchair suitable for outdoor use and on nice days takes his Mum out for a walk.

MintyCedric · 01/06/2023 12:43

@GoGoJasonWaterfalls

Just wanted to wish you the best of luck with your trip and hope you have a lovely weekend.

Several posters on here really need to learn the adage ‘if you can say anything nice, say nothing at all’…particularly as they appear to be in the fortunate situation of not having a clue about how long term end of life care works.

Your plans sounds great and just the right the balance for everyone. Take care of yourself as best you can in the circumstances 💐

Original poster
GoGoJasonWaterfalls · 01/06/2023 13:40

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The only thing I am trying to shield my daughter from is the indignity of seeing me haul her Nanny onto a commode with her knickers around her ankles, potentially drop her, hurt her, then be laid on the floor for 12+ hours waiting for an ambulance to help her back into her bed or wheelchair. She is fully aware of how poorly her Nanny is, knows (to a certain degree) what cancer is, and that she's going to die. My Mum has been in and out of hospital since her diagnosis over a year ago with infection upon infection and almost died of sepsis in February. DD has been aware of all of this but I shield her from the visceral impact of it because, as a PP said, she's FIVE.

OP posts: