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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:
Mamanyt · 28/05/2023 23:48

Nanny0gg · 28/05/2023 23:41

It really doesn't work like that

Show quote history

Pity. It does here, in SOME facilities. It's very uneven as to where it is available, and the cost is often prohibitive (depends on your insurance), but it does happen. Our health care can be wonderful, but much of it is utterly absurd.

MissTrip82 · 28/05/2023 23:48

I looked after my parent at home until their death. Almost a decade - the last three years incontinent. Unlike all the people judging you who have only doing this in their imagination. I don’t judge anyone who says they can’t or even that they don’t want to.

Don’t do what you don’t want to or don’t fell you can do. Don’t.

Talk to the hospice about what you can do instead. They will have lots of idea based on experience of what is and isn’t possible inside the hospice and nearby to give your mum a treat without doing this to yourself.

You are a good daughter. You are doing enough.

vipersnest1 · 29/05/2023 00:02

What a bunch of shitty comments you've got here, @GoGoJasonWaterfalls.
Unfortunately, some posters are so obsessed with ripping an OP apart on AIBU they forget that there is a human behind the post, or even to read it and consider the content before they wade in.

When my DM was dying, she expressed a wish to go home - it just wasn't doable. She wasn't incontinent at that point, but was incredibly weak and needed help to move and was generally very unwell.
It was heartbreaking to hear her say that she wanted to go home, but the only honest answer was that she wasn't well enough.
The only thing you need to do is to tell her that you love her and that you know that you can't look after her in the way she needs now. (You could also add you'd love for her to be able to visit and tell her you're sad that it isn't possible.) Hopefully she will understand and accept it.

feralunderclass · 29/05/2023 00:03

@Nanny0gg the OP said her plan was to spend a few hours in the morning with her mum and then spend the rest of the day out with her DD at museums, parks etc. In her OP she said if her DM came home then she wouldn't be able to do that (hence she didn't want to do it). It doesn't matter if it was a theme park or St Paul's cathedral, I said her attitude towards her terminally ill mother seemed odd to me, as if OP was squeezing her DM into her day trip plans.

Blossomtoes · 29/05/2023 00:08

feralunderclass · 29/05/2023 00:03

@Nanny0gg the OP said her plan was to spend a few hours in the morning with her mum and then spend the rest of the day out with her DD at museums, parks etc. In her OP she said if her DM came home then she wouldn't be able to do that (hence she didn't want to do it). It doesn't matter if it was a theme park or St Paul's cathedral, I said her attitude towards her terminally ill mother seemed odd to me, as if OP was squeezing her DM into her day trip plans.

Ffs, just pipe down. You’re really not helping.

lemonchiffonpie · 29/05/2023 00:16

If you haven't already done this, I would tell the staff what she wants and how you feel it is beyond you - perhaps they will tell her it is impossible, as there is only one of you to do the lifting and you are not trained to do it. Then take her for a spin in the grounds in her wheelchair when you visit the hospice, if that is doable.

For what it's worth, I think you are doing a marvellous job driving four hours and back to see her and phoning as often as you do, as well as looking after your little girl and going to work. This is a really hard time for you, as well as for her obviously, and I think you're doing really well.

justasking111 · 29/05/2023 00:17

I worked in a hospice for three years. Your mum is weaker than she realises. The care she is receiving at the hospice relieves her of stress. A visit home involves a lot of physical handling and transport which will exhaust her coming and going. Pain relief is available quickly the medical team will adjust dosage as and when needed. A nurse friend there moving a patient tore her rotor cuff, had an operation and was off work for six months. So no you can't risk lifting her.

You really don't want your child to see what can happen when things go wrong

Mummyoflittledragon · 29/05/2023 00:19

feralunderclass · 29/05/2023 00:03

@Nanny0gg the OP said her plan was to spend a few hours in the morning with her mum and then spend the rest of the day out with her DD at museums, parks etc. In her OP she said if her DM came home then she wouldn't be able to do that (hence she didn't want to do it). It doesn't matter if it was a theme park or St Paul's cathedral, I said her attitude towards her terminally ill mother seemed odd to me, as if OP was squeezing her DM into her day trip plans.

This is not at all what op means.

DeoForty · 29/05/2023 00:49

If she's on 2 person transfers I can't imagine the hospice would be ok with her going home for the weekend.

I also think your mum maybe has an idealised scenario regarding returning home. For lots of people it can be quite upsetting as it tends to highlight how things have changed.

Can you offer to bring her some things from home that she'd enjoy? Or order food or snacks that she would find comforting? Something to recreate that feeling of 'returning home' with you and your daughter present.

Trying2understand · 29/05/2023 01:32

Your Mum may want a final visit as a bit of a goodbye to her home. Is there another way you could facilitate this on a different weekend? Or maybe a day trip home? But back to hospice overnight? It sounds like this is important to her. I'd try to make it happen in a more realistic/safe way.

realityhack · 29/05/2023 05:32

And for anyone saying you can't just grab carers out of thin air- yes, the numbers of carers have dwindled, but the agency I worked for often added me to last minute shifts caring for end of life clients in their own home

You are very ignorant if you think this is the case in all locations and places I'm afraid. Its not possible where I live for example. I have seen it happen.

openstop · 29/05/2023 05:45

feralunderclass · 29/05/2023 00:03

@Nanny0gg the OP said her plan was to spend a few hours in the morning with her mum and then spend the rest of the day out with her DD at museums, parks etc. In her OP she said if her DM came home then she wouldn't be able to do that (hence she didn't want to do it). It doesn't matter if it was a theme park or St Paul's cathedral, I said her attitude towards her terminally ill mother seemed odd to me, as if OP was squeezing her DM into her day trip plans.

No that's not at all what OP was saying. She is trying her best to juggle a 5 year olds needs at a difficult time.

Haywirecity · 29/05/2023 05:56

If that's what my mum wanted that's what I would do. Clearly she doesn't have long and I'd do everything my power to give her the end that she'd like.

AdvertisementBoard · 29/05/2023 06:16

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.

‘Again it’s a catheter so there’s no need to try to lift them to a toilet’

Where does OP say her mum has a catheter? Or are you suggesting one should be inserted just for this visit? And potentially introduce infection? The mum sounds capable of using a commode, with nursing care.

And you keep saying you regret not doing more. What stopped you? Why didn’t you move heaven and earth for your dying relatives? I am sorry for jour losses but you need to get a grip and stop projecting your own issues on to the OP.

AdvertisementBoard · 29/05/2023 06:17

AdvertisementBoard · 29/05/2023 06:16

‘Again it’s a catheter so there’s no need to try to lift them to a toilet’

Where does OP say her mum has a catheter? Or are you suggesting one should be inserted just for this visit? And potentially introduce infection? The mum sounds capable of using a commode, with nursing care.

And you keep saying you regret not doing more. What stopped you? Why didn’t you move heaven and earth for your dying relatives? I am sorry for jour losses but you need to get a grip and stop projecting your own issues on to the OP.

Show quote history

And it also sounds like you had more family around to support you than the OP. Emotionally at least. That makes a difference.

EllandRd · 29/05/2023 06:17

lanthanum · 28/05/2023 19:55

Is it worth a chat with the hospice? I wonder whether they will say she can't go home unless there are two adults to move her. That would avoid it being you saying no.

Our hospice has a 24 hour rapid response team who will come out whenever you need them, my father is dying of Lung Cancer, he is being looked after at home with the district nurses, and hospice nurses doing his care. Would that be an option for you? She perhaps needs a change of scenery before she goes down hill.

EllandRd · 29/05/2023 06:40

realityhack · 28/05/2023 21:06

OP I am so sorry about your mum.

Ignore the bitchy and unkind responses, they are talking out of their arses and have no idea what such care really involves.

If your mum requires two to transfer then please do not do this- she would need OT equipment to enable this safely and worst case scenario, if you try to do it yourself alone, she could end up falling during a transfer and breaking a hip or you end up with a chronic back injury. There are health and safety reasons why mobility/transfers need to be carefully assessed in palliative care and this does not sound safe at all with you trying to juggle this all alone with a 5 year old. Who is going to watch your 5 year old whilst you are helping her with all this?

I would say no to her going home, BUT, I would see if I could bring in some of her favourite board games, music, movies and lovely food and try to have a nice get together in the hospice instead. Hospice staff are absolutely lovely so I am sure they could help you do this and arrange something really nice.

Some of us are going through it right now and know what it entails. The patients wishes should be paramount, a conversation needs to be had with all agency's working towards what mum has asked for. The 5 year old child is not the patient, this is your mums wish, please stop and listen.

neveradullmoment99 · 29/05/2023 06:47

ExtraOnions · 28/05/2023 20:23

I think a dying woman wants one last weekend at home … talk to the Hospice, and see if they can offer (or know who can offer) support to allow this to happen, even if it’s for one day.

The purpose of the visit is to see your mum, and for her to see her granddaughter, and it would be good to support that happening.

As much as the Hospice staff try, it’s not home, and I can understand how a longer term resident would like the opportunity to be elsewhere for a while.

This

abmac95 · 29/05/2023 06:53

She is your Mum and she is in a hospice. How can you say no? You need to put your Mum first. How is it even a question! Your dying Mum is asking you to take her home for the weekend. Its not about you or your kid.

countrygirl99 · 29/05/2023 07:00

Last year my FIL died of cancer. MIL was at home needing someone there 24/7. Trying to get carers for a a few extra hours a week so a family member while a family member took FIL for treatment was a nightmare, even with a 2 or 3 weeks notice. This level of care can't just be arranged at short notice unless the hospice are fully on board because they will need to do a lot of it. The OP won't be able to do it at all so chances are even if she was full steam ahead and happy to "move heaven and earth" it won't happen.

lemonchiffonpie · 29/05/2023 07:03

So who on this thread egging the OP on to do an impossibly task, and showering her with guilt, is planning to drive for however long and volunteer their services for this weekend visit to help her lift her mother, do toileting duties, and so on? You may herniate a disc, but never mind.

Mysleepisbroken · 29/05/2023 07:07

Do you have a partner OP? If so, he could come up for the weekend, which would mean 2 of you for transfer, and would enable one of you to pop out for the occasional hour to run 5yo at the park.

Catsmere · 29/05/2023 07:11

YANBU. I am my mother’s full time carer and I can’t help her off her commode, much less do any other lifting, and she’s not ill, just without any balance since strokes. I can’t imagine trying to do that level of care while looking after a small child as well. Honestly I think you would be wisest not to do this visit.

Catsmere · 29/05/2023 07:13

lemonchiffonpie · 29/05/2023 07:03

So who on this thread egging the OP on to do an impossibly task, and showering her with guilt, is planning to drive for however long and volunteer their services for this weekend visit to help her lift her mother, do toileting duties, and so on? You may herniate a disc, but never mind.

Well said. It would be a nightmare and extremely risky for all concerned.

Original poster
GoGoJasonWaterfalls · 29/05/2023 07:21

abmac95 · 29/05/2023 06:53

She is your Mum and she is in a hospice. How can you say no? You need to put your Mum first. How is it even a question! Your dying Mum is asking you to take her home for the weekend. Its not about you or your kid.

Yes it is. I said at the bottom of my OP that I'd be more than happy to do this when it's just me. Not with DD too. But Mum wants to see her this weekend, great as it's half term and DH doesn't need the car (we only have one) and as it's a long drive (likely closer to five hours) then it's a good opportunity for me to take her. Take her in for a few hours every day, let them spend time together in a comfortable setting, cuddles on her bed, a trip round the grounds, some coffee & cake then when Mum gets too tired and needs a sleep, we go to the park, to a museum, get DD out for a bit before going back. Yes I am being selfish here but it's because I'm trying to balance the best interests of all three of us.

OP posts: