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??

This is why I don't think the hospice will even let her. She was moved from a wheelchair to her bed the other day when I saw her. One nurse left the room and Mum wanted to be shuffled up the bed a bit. I went to take her under the arm with the nurse on the other side but she wouldn't let me. Said it was a safety risk as I wasn't trained and it was better for the nurses to do it.

I can see it from both sides - on the one hand, your DM just wants to be home for a bit. The hospice must feel so final for her, so medical. On the other hand, the hard work involved looking after an almost immobile patient single-handed without all the conveniences of the hospice cannot be underestimated. Plus your little girl too… It would be impossible. Oh it’s so sad.
I can only echo what PP have said, and that is, can you arrange for a nurse to come and stay and help in her home?
Otherwise could one of the staff try and explain to your Mum that home would be impossible owing to lack of a proper bed (hospital style bed is the only option for people in this position in my experience), and the facilities that are lacking at home? It might sound more palatable coming from them and won’t affect your relationship.
I’m so sorry you’re in this situation, and your poor Mum too 🩷

Yanbu - your lovely DM clearly needs a team of carers and looking after a 5 year old is a full time job solo - you cannot possibly keep your DD ok at the same time as doing everything for your mum. You would need to hire a nurse, or possibly two, to be with you around the clock.

Your original idea is much better. DD will form some genuinely long-treasured happy memories if the visit can be of several short (45 min max) visits that are fun, morning and afternoon with other stuff in between. With the other plan DDs memories of the weekend will be mostly miserable and possibly traumatic.

I think your mum will absolutely love seeing both of you and this is the main thing. Maybe just a short walk or something from the hospice if she is in a wheelchair.

My mum died at home last summer and the last two weeks were incredibly difficult with no care provided at all. All the best.

DH is away. That's part of the reason we're going. Mum really wants to see her, which is why I thought daily visits for a few hours at a time (any longer is too much as she gets tired easily) with some walks round the ground would be ideal.

Why not say a picnic type meal in the hospice grounds. You could have a chat knowing that the staff are close if needed.

But you also have to be able to do it safely, and it sounds like the OP can't do it safely. I would not do this for my mum
If it wasn't safe or practical.

We managed to keep my DGM at home when she had terminal cancer but the only reason that was possible was there were 3 of us who all lived close by doing round the clock care plus paid carers and nurses that took time and money to arrange. The final time my DGM used the commode, her legs went completely and fortunately my DH was visiting as he had to lift her as there was no way either me or my DM could do it safely. If the op was on her own that situation could be very dangerous for both her and her DM. My DCs visited a lot but were shielded from all aspects of her care, not something a 5 year old should witness.

OP, I am genuinely sorry for my hurtful reply. I should have waited before responding to your opening post.
My grandmother, to whom I'm very close, is going through the same thing. I can't imagine not moving heaven and earth to grant her request, but I understand that everyone's circumstances are different.
I did find your tone in the OP very flippant, but that's no excuse to express myself in the way that I did.
Apologies once again and all the best.

The care of elderly or il parents do get people quite agitated and there are a group of people who say 'I would never use care, I would bend over backwards' BUT that isn't actually always what is best for the patient never mind the rest of the family. You are getting flak when O can see that you are completely torn. Your mu has understandable wants but her needs are met at the hospice. If your daughter is with you then you need to put her needs first because she is little. I would go with the planned visit and then on the next visit you take your mum home for a day. When my Gran was ill we would take her out for lunch or home but after a few hours she did tire and wany back to the safety of the care home.we did take her on one last trip to where she was from but we paid for a strong carer to come with us the entire trip. It wasn't feasible otherwise. Its about safety and health and care and that is about love .

The hospice must feel so final for her, so medical

Actually, hospices are nothing like hospitals, they are much more hotel like on purpose. I have been in several during college placements and was really struck by how comfortable and calm they were, it was nothing like being in a hospital.

"Dont pick a fight with me"
"I didnt say sponging, are you drunk?"

No, you just said something spiteful and played the victim when your sentiment, but not exact words, were called out.

Waaah waaah. Way to poke the bear and whinge when you get what you deserve.

Back off of poor OP and find someone else to wind up.

Lookong forward to your petty response where you try to act like the bigger person and make yourself look thoughtless, unkind and nasty, such as "Your responses are ridiculous, I'll leave you to it"

No, actually, your responses are ridiculous, not OPs, so take a long hard look at yourself.

I think you need to ring and speak to the hospice about her wishes. See what they suggest. You would definitely need carers to be arranged. They'll have had this request from others. I think it would be nice if you were able to try and arrange some time for her in her own home sometime soon, I don’t think you can wait ‘until she’s stronger’ but the hospice can advise on that.

I'm so sorry that your mum is dying and some of the responses on this thread, it's actually upset me as I've cared for someone in this situation, two people in fact, and it's just so awful and hard and if I'd got replies like this I would have been very distressed.

In my husband's case, there was no option to come home, he need a team of 2/3 to move him and toilet him, so once he'd moved from home care to the hospice that was that. The hospice won't allow people to go home without the correct equipment, support and trained carers, you can't just take people out and let the fall over which is very likely if you don't have the training to transfer or the equipment at home. The chances of getting carers in at short notice is nil, it takes ages to be accepted by Macmillan/charities for someone sitting with you (plus they don't do actual hands-on care in the one we had) and all the agencies I know are short-staffed.

It must be very traumatic to go and stay in your dying mum's house and to suggest you are going for a holiday, well, it's just such an awful thing to say. What you are thinking about, which is utterly correct IMO is how you can combine this trip with looking after your 5 year old so she's happy, occupied and not traumatized. Many terminally ill people look very scary, and seeing her in a nice hospital and having a cup of tea might be very different from you trying to care for her, wipe her down, change her clothes, the smells etc in her old home if it's not set up well and you don't have other carers. I would ask the hospice about taking your five-year-old in and when's best, they are usually fantastic and used to the whole family visiting. Or even leave your child behind if that's a possibility.

It sounds like she wants to do something, so maybe a short visit, or even sitting in the garden of the hospice or hospital, having a cream tea, take the things she can eat- I would talk honestly about the prognosis of the hospice and ask them for help to help your mum in her final weeks to make her happy, explain what she's said and get their advice.

@GoGoJasonWaterfalls do what's best for your dd and yourself. Some pp's are just nasty.
Your dm is expressing a wish that unfortunately is unrealistic.
And there's nothing wrong with taking a 5 year old out sightseeing in between visits. No-one could expect a 5 year old to either spend 3 days visiting a hospice or stuck in a house with a very poorly dgm.
2 x 2 hour visits a day will probably exhaust your dm anyway.

If you don't want to, can you speak to the hospice about your concerns so they can convince your mum? So you don't need to carry any guilt?

To be fair to you, I thought I would bend over backwards when we got the shocking diagnosis of stage 4 out of nowhere.

Family pointed out how challenging it would be and within 6 weeks it was abundantly clear how serious end-stage cancer is and the reality of the physical challenges and how quickly things deteriorate.

If you'd asked me on day 1 and day 60, my experience taught me that love cannot overcome reality. So sorry to hear your news X

3 days? There were young children shielding thst didn't leave their homes for six months or longer. But I agree you would need help to care for her at home

Thank you. It probably did sound flippant as I didn't really go into the details of the care needed. But let me be clear that I am not against her coming home, but it needs to be when I can fully focus on her and not with half an eye on DD who will get bored and who will be loud and who will get boisterous. And I will feel guilty for DD being unsettled and disturbing Mum and I will feel guilty for neglecting DD to make sure Mum is ok.

I would not take your mum home for a weekend it would be to much for all of you. I think some people are underestimating how difficult it is to look after a seriously ill relative.
Is there a park near the hospice you could go to for a picnic with your mum and daughter? Or make a treat afternoon tea or picnic to take in to the hospice and perhaps have it in the grounds of the hospice.
I am sorry you are going through this.

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.

My MIL (with whom I am extremely close) always tells me she'll never go into a home etc but she never actually did any physical care for her elderly relatives and they did, when push came to shove, go into homes when they were very frail/ had dementia/incontinent etc.

My point being, every one has an opinion about what they would do, and then there's what they do do, when they are faced with the reality.

OP it's a horrible situation but it sounds like going home is really not an option, and the hospice wouldn't allow/facilitate it. Talk to the hospice, let them have the difficult conversations, and prepare for your visit with your DD. Incidentally, I have a five year old and I know exactly what you mean. You're not talking about 'making memories' you just need her to run around the park several 100 times so she's not so endlessly annoying in that way only five year olds can be.

Much love to you

I think your mum is asking because she would love to, and that is totally understandable, but don't feel bad if you can care for her properly. Saying no might be what she needs to keep her safe and also prevent any awful moments that she might not be anticipating (I'm thinking of the commode and your 5 year old). You know your mum, yourself and her illness ❤️

OP I had to say no to my terminally ill mum's wish for a last trip. She was nowhere near as frail so we could take her for the weekend but she wanted to go much further away and it wasn't realistic or safe. And there were four adults caring for her and the children were older and more independent.

What she wishes unfortunately does not sound physically possible but I empathise with how upsetting it is to have to say no to someone in this situation, wishing you all the best.

@GoGoJasonWaterfalls

I totally get it Some of the other posters have come up with some great compromises, so hopefully you can find something to keep everyone happy.
Best wishes x