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??

So sorry OP your getting a hard time here from people living in fantasy land. You are definitely not being unreasonable your mum needs two people to use the toilet and two to move up the bed, she is frail and unwell, you will not be able to assist her safely at home. There is also a social care crisis going on it's so hard to get carers in at short notice. In reality even the journey home and change will exhaust your mum.

Your original plan sounds much better to take your daughter to the hospice where she can see your mum comfortable and have access to facilities there and if she is feeling up to it can be assisted with two nurses to a wheelchair for a walk in the grounds together or even wheeled out on the bed to the gardens to spend time together and in all likely hood this will be enough for both your mum and daughter leaving you time to do some trips with your daughter which she can come back and tell your mum about and then they will both have lovely memories of spending time together rather than a fraught situation at home where your struggling to meet her care needs and your daughter distressed seeing her in that situation.

Also I think your doing amazing doing as as much as you are! you have to put your daughter first and hold down a job and not get in finial debt which will impact you all plus you have to look after your own mental health as well
and I'm sure your mum would agree with that too, can't believe what some
Posters are suggesting they are living in fantasy land and only you know your situation and what works best for you and your family, take care OP and I'm sorry for the difficult situation your in you sound like a lovely caring daughter and mother and hope you all have a lovely weekend together

Would your Mum cope emotionally with going home and then having to return to the Hospice?

I would try and make it work by hiring carers as a one off. This and petrol money would be going on a credit card if I couldn’t afford it. You will never get this opportunity again.

I don’t think YABU by the way, I think your situation is really tough, but I would look into the options to try and make it doable.

Hopefully the quote has attached- new phone issues!

I think the above quote says it all, OP. It is one final lovely thing you could do for your mum.

'Hiring carers as a one off'. And 'hospice at home'. This stuff is cloud cuckoo land. There is a massive shortage of carers, you can't magic them up, never mind the practicalities. OP, best of luck and follow the hospice team's advice. I did wonder- if petrol money is a big issue for your visits, as you mentioned it- maybe your mum doesn't realise and would like to help if she knew?
How about suggesting the time at home another weekend when your partner's available, so she can have it as a hope. I know how hard it is to say no but some posters here are being manipulative and absurd.

My Mum checked her bank account when I was there next and was delighted that she finally has enough to pay for her funeral (she is on benefits because of the cancer) so no, not enough to fund my petrol and I'd never take her money.

She's saying no because unlike you, she actually lives on this planet. As the person who'd be responsible for making it work, OP doesn't have the luxury of naivety.

You're being realistic not selfish. Going by some of the replies it shows that people are not aware of what it will take for you to take her home for three days, especially with DD in tow. What you have planned sounds lovely and we have some nice weather coming up so taking out in the grounds of the hospice will be lovely.
I would discuss the option of her coming out for a couple of days with the hospice staff and doctor and then discuss it with your mum too. If it is possible then do this with her on your own, when you can spend some quality with each other.

""There is a massive shortage of carers, you can't magic them up""

I'm not sure where you live but where we are, we paid for care for Dad at home and could get care whenever we wanted it. Literally at an hours notice.

We found 24/7 overnight care (he was awake all night) so expensive that, in the end, we were advised to use a Nursing Home for his care

Was this recent? Sorry for your loss btw.

People are suggesting all sorts of workarounds with private carers. The OP has said upthread that she can't she can't afford the 50 quid petrol every week so shes not going to be able to afford a few hundred for 2 carers for a weekend. And I would be surprised if the hospice can spare carers for a weekend visit, unless things have changed a lot since my dad died 10 years ago when it was difficult for him to get a hospice place and he ended up being cared for at home. There barely seemed to be enough resources to care for people adequately never mind facilitate trips home. It took ages to get GP appointments to change his prescriptions as he got ill, when he had palliative radiotherapy there was no patient transport arranged and my mother had to rely on a kind taxi driver who helped him get up the stairs back home, and over Christmas he was dischargedfrom hospital once with nothing, no medication, no care package no nothing. Honestly if your mother is comfortable and her care needs are being responded to on a day to day basis then that is a lot to be thankful for.

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.

The reality, and I'm going to be blunt here given some of the sentimental cloud-cuckoo-land posts, is that a weekend in unsuitable circumstances might well kill the OPs mother, and not pleasantly. She needs two professionals and equipment to care for her adequately. So OP drags her home, and drops her, and then what? She dies waiting for an ambulance, in huge pain and distress and lack of dignity and all witnessed by her small granddaughter?

And you think that's somehow preferable to a visit in her safely cared-for surroundings?

Some sense at last. None of those guilt tripping posters has a clue.

Maybe the OP can't afford to hire some help. The travelling costs alone are very expensive.

Oh OP that's so hard but YANBU.

I think you just have to say that you aren't capable of manoeuvring her without another adult to help, so it just isn't possible to bring her home from the hospice when it's just you and a five year old there. Don't mention wanting to go out and do other things. There's absolutely nothing wrong with that either but probably best not to talk about it to your mum.

Out of the house with a 5 year old.

Agreed. I thought the same myself. The risk far outweighs the benefit for all 3 of them and op is very sensibly coming up with a plan to balance everyone’s needs, rather than what her mum would like in an ideal world.

The OP is an exhausted mum travelling hundreds of miles every other weekend.

I do not get the impression that her mum thankfully, is on the brink of death just yet. The OP needs to conserve her energy. I’m sure if it came to her mum’s last few days, the OP would be by her mother’s side and possibly bring her home to die if that was felt best by everyone.

I do not think it is worth it for her to drag her mum home for 48 hours with all the hospital paraphernalia Which could be stressful for all involved. The OP may need training, carers might be absent or extremely expensive and the reality could be uncomfortable, undignified and extremely stressful. Every decision is a risk-benefit weigh-up. On this occasion, I’m not sure that the benefits outweigh the risks.

Many people in hospital want to come home for the weekend. That does not always mean that it is the right thing.

We can only guess what we would do in this situation. None of us really knows.

Did you read the piece where the grandmother wants to see her granddaughter?

Ladybug14

""There is a massive shortage of carers, you can't magic them up""

I'm not sure where you live but where we are, we paid for care for Dad at home and could get care whenever we wanted it. Literally at an hours notice.

We found 24/7 overnight care (he was awake all night) so expensive that, in the end, we were advised to use a Nursing Home for his care

Was this recent? Sorry for your loss btw.

July/August 2022. 💙

@AdvertisementBoard - thank you! I'm not going to go into the intricacies of my Mums current health but I don't believe we are near the end. We will be, it will come, and then we will start making difficult decisions about her end of life care and whether this can be done at home. And at that point I will reduce my hours even more and be up here even more and try to keep every plate spinning. But (oh some posters are going to have a field day with this) I can't start this process without knowing there will be an end. It will physically, emotionally, mentally and financially drain me. I'm trying so fucking hard to be what everyone needs me to be, and I really want to do this for her if it's what she wants, but we can't feasibly do it this weekend.

OP. I have been in your situation. My (not elderly) Mum basically came to live with us for the best part of 3 months before she died. She was active and mobile until maybe a fortnight before she died. But she needed personal care and pretty much 24/7 supervision and support.
My MIL lived with us for several weeks after her husband died until we could arrange residential care. She was mobile but unsteady had unreliable toileting and several mornings we found her naked on the floor having tried to use the commode and it going wrong. I really never wanted to have to deal with that. My DH was immensely upset too.
Granny lives in a care home now and often asks when she's leaving. We brought her home once, not even overnight and we agreed never again. Do not underestimate how important the space and equipment homes/hospices have.
I also have a DD, she was 8 during my Mum's decline and early teens the second time.
Caring at home for an elderly relative by yourself with a small child would be relentless and probably horrible. I really really wouldn't recommend it. My DD has been quite traumatised by the stress and upset we felt at the time.
You can't make a normal home easily suitable and safe for someone who is frail and can't use the toilet.
It takes a team of people to do this in residential care. Not one person who is also looking after a very young child.
Your Mum might want this but in your shoes (especially with the wisdom of hindsight) I would refuse. You need probably 3 people minimum to be able to do this safely.

If it is something she really wants I would move mountains to make it happen. I'd only regret it for the rest of my life.

This is so wrong and irresponsible. Carers aren't available at the drop of a hat and who is going to pay for them? Particularly not for this level of specialist care?!

And suggesting that someone goes into debt to facilitate more visits when she's already juggling a child and a job at a distance to the hospice is crazy. She must be exhausted and under so much pressure. Adding debt to that is a really bad idea.

Having done the terminally ill journey twice with my dad and then a close friend, I'd always advise not taking the 'moving heaven and earth' approach. It's easy enough to say, but you don't know the reality of what you're signing up to or how long for. With both of mine, they lasted three times longer than anyone expected (running into months for one of them) and keeping going at that level of intensity alongside keeping everything else going (you still have to look after your child and go to work. It's not like those are optional!) was pretty awful. I did it, but I'd be very wary of committing to it again.

The OP is doing a huge amount and I thought it was a really sensible plan for the weekend which would allow her Mum to see her daughter whilst providing for the needs of both.