To say no to weekend leave from hospice

[GoGoJasonWaterfalls]

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??

YANBU. She currently has a team of people caring for her which is very different to you doing it alone whilst also parenting a small child.

However, bear in mind she may not be stronger for this in the future (but still don't be pressured into agreeing)

YANBU. You have to pit DD first. If she was 15 it might be different but you need to do what you can to make her last memories of her gran as nice as possible in the circumstances. Much love ❤️

This is what I tried to say to her earlier. Two of them getting her from a bed to a wheelchair was an absolute mission - and that was two trained nurses. I can't do that alone. She can't support herself (legs have atrophied post radiotherapy) so I'd have to bear all her weight myself. Every time she needed to move or needed a wee.

That's what worries me too. I don't want DD to associate Nanny with this and then feel scared to go visit her again.

How far away are you? Can you not manage up for shorter visits more often? Even just going yourself.

I'm sorry to say this but don't say she needs to wait until she is stronger, there may never be a time she is stronger. I think you're going to have to break it to her that she's just too sick for you to look after without assistance.

That's very hard. I totally understand why she wants to go home for a bit, but I also understand the reservations you have. I think you will just have to gently explain that you won't be able to manage. Really tough situation for you both, I'm so sorry.

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.

I agree with this. I am so sorry because it feels like it would be such a gift to give her something like that but the reality of it would be uncomfortable and intensely stressful on your own I think. It’s very hard manoeuvring someone who cannot help you do it. Tbh some of my worst memories of my parent’s near end was doing some of this alone and tears all around. Plus a lot of other unmentionables.

Trust me, someone so frail and physically dependent can't really cope with a weekend of the constant presence/ noise/chatter of a lively 5 yr old. It would not be fair to either of them (or you).

I'm surprised the hospice haven't made that very clear to her.

You're not being u reasonable, of course not. Sometimes hospices can send a nurse home with someone? Would that be an option?

YANBU. And would gently echo other posters: with terminal lung cancer, things will get progressively worse, not better. This is likely to be as good as it gets, and already sounds as though it would be impossible for you to manage on your own. xxx

Can you get in touch with Marie Cure to see whether they can help? They do help care for the terminally ill I their own homes.

Its extremely hard to look after a parent at this stage. Could you perhaps take things from him into the hospice instead? Old photographs to look through and a few things from him instead? Spend time looking together at photographs with your dd for a bit, taking in food and eating together

sorry home to him

Actually I would say the person who is in a hospice at the end of life is the priority - not the child. But I agree that op shouldn’t be expected to handle this herself.

Oh yes, Marie Curie might be able to spare a “night sitter”, although iirc they are not allowed to do any actual physical care, they’re more of a support for the carer, for a night’s respite (it’s usually nights). There are also private care agencies you could contact for help, although you would have to pay.

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

If you feel she'll take it hard, could you call the hospice to explain? Perhaps they can convince her that she's not safe to go home at the moment.

It must be so hard, she must be sick of the same four walls. But equally, there's no way one untrained person would be capable of doing that, it puts you all at risk.

Is there a compromise where she comes to the park with you for an hour or so each day? So she gets see you and her gd out of the hospice but you're not responsible for any personal care.

On first reading I did feel a little sorry for your mum,but then I remember my grandfather taking a tumble when we visited him after several mini strokes and his mobility was bad and I couldn't lift him as had just had c section,my 6 year old was distraught and refused to visit him ever again,he died a year later.
So I would say definitely not possible with DD present too.
So sorry about your mum's diagnosis 💐

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.

Yanbu.

My mum spent her last 6 days in a hospice.

She didn't want to be at home and a burden to my dad and when she was admitted she could no longer walk.

It's very different being cared for by a team of specialist with the right equipment around to be at home with 1 person.

You're not terrible. You're realistic.

I'm four hours away. I visit every two weeks. I've already had to drop my hours at work to facilitate the drive up there and back. I can't afford £50+ in petrol every week right now.

I had a very similar moment with my Mum shortly before she died of bowel cancer. She wanted to go for a McDonald’s and wanted me to take her. I just couldn’t manage it. She was in a wheelchair and simply to get her in and out of the car by myself or even with the help of another person was just too difficult and she was on so many drugs and had so many health needs it was just impossible. Plus I was going through my own health issues and had a toddler with autism and no other child care apart from dh who had already taken tons of time off work for issues with my mum. So I said no, and I still beat myself up about it now to be honest but realistically it just wasn’t possible. Sometimes these things aren’t and you can’t always do everything. ❤️

Have a chat with the hospice about your concerns. If she's needing 2 to transfer it doesn't sound like a possibility anyway. I would instead focus on positive things you and your dd can do when you visit her, stuff like take her out in the hospice garden, play a game of cards together, get dd to make her a cupcake, draw together, or whatever you think she and you can manage and would enjoy.