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.

I'm so sorry you're having to make this decision, OP. It sounds incredibly upsetting for everyone involved but you especially.

It is a lot of pressure to put on you. It sounds like your mum is unwell enough that her health could take a very rapid and sudden decline, which would put you in a terrible position if you were trying to take care of her alone at home. It could potentially be very traumatising.

It sounds like your mum is at a stage where she is too unwell now for this to be a safe or realistic option. You're doing your absolute best and you are not being a bad daughter by trying to look out for her and not put her in an unsafe situation in her vulnerable state. ❤

I can only echo this. Mums hospice is beautiful. She's in a private room with her own bathroom, patio doors leading to a little courtyard. I feel it's far better for DD to see her settled and happy here where we can step out if Nanny needs 'help' rather than her having to watch me manhandle her, likely shouting at her to stay out of the room and her wanting to look.

Is there any way you could bring a little piece of home to your mum? Maybe take in her favourite teapot, plate and cup and have a picnic. Dig out her old photo albums or things to reminisce with. Things, which smell of home.

Please do not feel guilted for being unable to take her home. Your energy and hers would be better spent on having some quality time with your dd, the 3 of you.

Your dd may very well remember your mum and visiting her as she grows up. As a reminder, you could slip your mum a big bag of sweets or an oversized toblerone that she can give to your dd. My meaning is to give something a little out of the ordinary, which your dd won’t easily forget, this she is more likely to remember visiting your mum.

It might not be full time though. DF had night nurses through Marie Curie, but day nurses (not Marie Curie) popping in at intervals to administer drugs / deal with catheter etc. They weren't there all day though.

If you'd asked me on day 1 and day 60, my experience taught me that love cannot overcome reality

This is a good way of phrasing it.

Yes, I've actually done this already! DD desperately wanted a purse so I ordered one and Mum has put it in her drawer with £10 inside it for when we visit.

They are some lovely, thoughtful suggestions.

Have a quiet word with the hospice staff telling them your concerns and ask them to speak to her and suggest that it is not a viable option just at the moment. Could she come home for say two hours one of the afternoons? It may just be that she wants to see her own home again?

Can I also thank everyone who has taken the time to respond. It's heartbreaking to hear your experiences and I'm sorry you all had to endure this.

I'd speak to the hospice for advice, it doesn't sound like it's feasible or fair (on any of you) for a weekend at home, but perhaps they can set up something special in the courtyard or have some suggestions?

I wonder if the hospice staff could facilitate her coming home for a couple of hours one afternoon for afternoon tea?

I think the most important thing now is quality time. And that is best served by you and dd visiting your mum in the hospice. Not distracted by accidents, toileting and hoists etc.

The hospice will be used to this kind of request. I am sure that they will be happy to take responsibility for saying no to her going home. Thus taking the burden off your shoulders.

Enjoy your precious final days. I am so sorry. You must be shattered by the commuting every fortnight. Wishing your mum a peaceful end. Please don’t feel guilty. Your feelings make complete sense. X.

I definitely think chatting to the hospice about possibilities is the next step. The staff there are wonderful and I'm sure they'll have some ideas and suggestions.

Definitely. As others have said, this surely isn't the first time they've had a patient who wants to go home when logistically they just can't.

Read the thread and have some sympathy for someone whose mum is dying. I am more shocked by the behaviour of people like you.

Many relatives have spent their last days / weeks / a few months in a hospice.
I regret not being there for them more. We were 3hours away ( each way ) with young children.
I wish I’d organised a way of working it now. I do regret it. I / we visited every weekend, for the weekend. Towards the end it was every day, but at that time they are non responsive, not talking, bed bound. I don’t know why I visited more then and not more when they were still a bit capable.

Do what suits you but if you’re on here asking for advice that suggests you’re not sure, so may regret it later on.

@feralunderclass

RTFT what is wrong with you people.

You're shocked that I don't want to do a job that is done by two qualified nurses, alone, with my DD in tow? Are you also shocked that I only visit her every two weeks? That I only phone every other day?

If DM has assets could she hire nurses for the weekend?

YANBU to not want to do it by yourself. Though I appreciate your DM may be at the stage where she’s comfortable with the risk for herself, you are in a different position and anything going wrong would be traumatic and stay with you.

I see why you’d like to keep things light for your DD, but I think if you have the help to make it safe, you could make the weekend a good experience for her, although not one focused so much on being a fun trip away. Kids are interested in the world around them, if you have the help to make your DM safe you can spend the time telling your DD about your childhood, pointing out all the ways DM looked after you and the ways you can now look after her (with a bit of emphasis on how the hospice has so much set up for her too).

You would, I think, need a safety net plan for DD for if your DM deteriorated at home - which I assume is a significant possibility with the stress of changing location.

So sorry you’re going through this OP. Having recently lost a parent, I can hand on heart say I would’ve moved heaven and earth to give them what they wanted in their dying days. It was all awful, BUT I would do it all again in a heartbeat. If there is a way to make this feasible for your mum then I would 100% do it (perhaps your daughter could stay with a family member, or a carer could help out?) but it’s really tough.

I reported them. Please ignore these people if you can. You have too much on your plate right now x

Nothing wrong with taking her daughter out, its a way of coping, and she has to keep it together. How would she feel if she took her mum home, and she died there crying for help? At the hospice they can talk, and she can always show a video of the house etc.

The beautiful thing about hospices is that they allow the terminally ill and their loved ones to be just that. Caring is practical - there’s not a lot of space for carers to deal with the complicated emotions associated with losing their beloved parent/partner/family member/friend. Allow yourself to be your mother’s daughter, and her to be your mum. Let the amazing professionals deal with the heavy lifting.
My heart goes out to you both. From personal experience though, let the hospice be the carers at this stage. There’s nothing selfish about this at all, and please ignore anyone suggesting that it might be.