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??

Regret what? If it's important for her to go home for three days, I do it alone. If it's important for her to see DD, she stays in a professional care setting. I'm not denying her request.

Ok, you sound pretty sure here. Let's talk practicalities. What exactly would you do to make it possible this weekend?

OP you can tell from your posts you want to do the best by your mum, sometimes it's not just saying yes sure it's seeing the bigger picture and applying reality to it. Speaking with hospice staff and having a few hours per day with your DD sounds perfect, it's easy for people who aren't actually living it to say yeah I'd do that- if you weren't bound by the reality and logistics of doing so you would also, there's nothing to suggest you just don't want to see her home for a few days, it's just not practical.

OP,

If you injured yourself lifting your mum, you could be left with long term back issues.

I have known this to happen to a few people.

If it takes two trained nurses to lift your mum, do not even consider it.

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

Ah, you have similar experience then? It might be really useful for the OP if you set out step-by-step exactly what arrangements you put in place and how it all worked, and if it was additionally tricky having a small child to care for. I'm sure she'd find that helpful?

So helpful. It's very easy to say something like this but the reality is totally different.

Perhaps just explain to your mum that as much as you would love to take her home to spend the full weekend together, you just wouldn’t be able to provide the level of care needed on your own. I wouldn’t say anything about when she’s stronger because that’s not something that’s realistic. Aim for taking her out in the afternoons for a few hours instead, there are taxis designed for wheelchair users although they may well need booked in advance.

You really need to think what's best for your mum. I've cared for a terminally ill relative, but was assisted by 2 live in carers. It's really hard and you need to think care rather than relative and that is a hard thing to do. I think you need to forget taking her home, good carers are booked up for months so just get a couple of carers is not feasible. I agree with pps who say something like a picnic in the hospice grounds or even a short walk around the block would be the best choice, even this is likely to tire her out

DFIL came out from hospital for his 70th birthday, planned as an afternoon visit. DSIL (married to the middle son, works in related profession but in the community) arranged for a hospital bed at home, "just in case", but things had moved fast and everyone else knew he wouldn't be coming home again by the time it was delivered - he was going to hospice as soon as abed was available.

But on the day of the party, bed had arrived and it was seen as useful to have in case a rest was needed. Which it turned out was a good call.

But then DSIL got DBIL all het up (middle son) about "dad is enjoying being home, he should just stay the night". No thought of the significant care needs for a large man who was no longer mobile, in pain, had significant meds needs, and who did not want any family doing personal care when he was still coming to terms with it having to be done for him. (We had gone from mowing the lawn to never coming home in about 4 days and this was less than 10 days later).

It caused huge upset in the family. Elder son (DH) and daughter could both see DFIL was deeply uncomfortable both with the thought and physically, but couldn't stand up to DDIL. DMIL was beside herself and had let herself get swept along with the hope he could stay but hadn't faced the realities of it, so got terribly upset about it all. The DGDCs were all terribly confused and upset (4, ranging 9 to 3). The 2 who started it all lived next door and bailed out when the going got tough every time and walked out again that time leaving chaos behind.

Instead of DFIL going back to hospital having had a nice day (which he'd had, and he was happy, or maybe resigned and accepting might be a better way to express it, to be going back to hospital - but not upset about it before it all kicked off ), he went back late, terribly upset about it all and about the chaos caused. And late for his meds and in more pain than he should have been.

It caused a lot of upset and certainly changed how DH saw his DB and DSIL.

I say this not to cause upset but to show that there are plans that can be put in place to go out, if physically practical and possible, for the unwell person to enjoy something suitable to their needs at the time but not putting too much pressure on them or the supports available.

So planning for afternoon tea somewhere, maybe even at DM's home, but with sufficient support to manage her needs while there, might be great. Or a car trip to see some places of local beauty she's always loved. But planning a 3 night stay could be way too
Much for her ans you all, especially without the trained support she'll need.

Well you were bloody lucky because we often had to have 2 family members taking time off work to get FIL to hospital appointments last year. 1 to take him and 1 to xare fir MIL because we couldn't always get extra time from the agency that hasd been going in 4x a day for over 5 years.

And giving your DM the chance to spend a good chunk of time with DD, but also planning it in manageable chunks so she doesn't get overtired from boisterous DC and DD not overwhelmed by long days in hospice (they're nicer than hospitals but still boring for smallies for long periods), is absolutely a good thing to do.

If DH can spare the car another weekend when it's just you, maybe see if she wants to come home for the day when you have time to plan support, get your head sorted for what's needed, and can be fully there for DM. So she can go through things (you bring them down to her and go through them together downstairs), or decide how to handle different things, or just visit her home again. But when it suits to do it and when you have time to put the necessary plans and supports in place.

And if that can't happen, don't feel guilty about it. Everyone does the best they can, faced with their individual circumstances and capabilities and what supports are around both the person who is sick and the supports available to their wider family/network of friends etc.

So what is totally do-able for some places, some trusts, some families and some stages of illness, can be utterly impossible for others in similar circumstance but where illness is presenting differently, trust doesn't have full teams or there aren't enough paid caters available, families are far away or cannot help for many reasons etc. And everything along the scale in between.

Just do the best you can, that's all you can do and it sounds like your heart is in that space, caring for your DM.

Don't be so sure

You have to be realistic

You need to read all of my posts before you make uninformed comments.

@GoGoJasonWaterfalls sorry you are going through this.

Right, taking her home for the weekend is completely impossible for all the reasons you’ve mentioned. Please do call the hospice and ask for their advice on what might work. They may have the resources to arrange an afternoon visit- bearing in mind, transport, wheelchair access and all the other personal and medical care she might need.

If they can’t help then I’d strongly advise that you very gently let mum know that you’ve tried but the hospice can’t help. If they can’t do it then it’s obvious you can’t.

Also it could well be that your mum is voicing a fantasy. If it was arranged it may well throw her into a panic and end up with her changing her mind. She will be feeling safe and relatively comfortable where she is.

All the best to you. I hope your visit goes well.x

@GoGoJasonWaterfalls I’m really sorry that you are getting a hard time on here. You know your situation and you know what will or won’t work.
I think that you are being realistic and I admire you for that. Let your mum and daughter make nice memories together at the hospice.

It’s bloody hard and I feel for you.

No. No family.
Just me and a lot of elderly relatives.

Sounds like you are doing your best under very difficult circumstances.

My mum got an extremely painful frozen shoulder for years after caring for my terminally ill father. The care burden can be immense.

At the hospice, your mum will receive the care she requires without really needing to think about it, because the nurses/HCA are so matter of fact & skilled. They don’t make a fuss about having to get her to the commode etc because everything is set up to make things as easy as possible & they have trained staff. I doubt she has really thought about the practicalities of not being able to get upstairs or having her daughter clean her up.

I suspect it’s less going home & more going back to a time when she could bake a cake with her GD & play with her in the garden. It’s absolutely heartbreaking for you but I completely agree that you are making the right decision. Quality time in the safe environment of the hospice will be better for all of you.

Yes, I do understand. I lived with my mother until she had to go into a home because I couldn't cope (which she loves and where she is very happy) so I do understand how difficult it is. But when her end comes, if she wants to come home, I'll do everything I can to facilitate that. It's different trying to cope with the relentlessness of it rather than for a short term end. For me. That's what's right for me.
If someone else doesn't want to do it, I wouldn't judge. Its hard. The only reason I commented here, is that the op asked.

Having seen home hospice and also hospice care with two different relatives over the past couple of years, I will be going hospice all the way when my time comes (not what anyone asked, just thinking aloud). Home hospice is great, but the nurses only come a few times a day so if the medication runs out or you pull on the line or the person gets a bit agitated, you have to wait. It seems to be so much nicer to be in a beautiful (and our local hospice is like a private hospital) room, nice grounds, food laid on for family in the cafe, supportive staff at all times, it's also much nicer for family and friends to visit there as no hands-on care is needed and everything is provided, so the whole visit can be chatting to them instead of stressful logistics. I ate in the hospice for several weeks.

OP, when you go in this time around with your dd (and a hospice is by far the best setting IMO for a young child to see someone who may be altered in appearance and almost frightening if they are very sick and aren't going to be seeing them regularly or as part of the household), ask them about visiting home for a few hours and see what they say. Hospice staff will have good ideas and also know the limits of them as well.

Most care agencies don't just take on terminal patients at home without doing an assessment anyway, pretty obvious if they want to provide the right amount of care, check the equipment is there, they don't put their workers at risk by sending someone to 'help out' without prior assessment.

Just a quick update. I spoke to the hospice yesterday and after a lot of back and forth, they have agreed that the whole weekend is not feasible. They will spend this week helping her gain some strength in her legs so she can better use the twist/turn thing which helps get her from bed to wheelchair. We will practice on Friday and if I feel comfortable, she can come home for a few hours. The hospice has an arrangement with a local cafe and will order in afternoon tea for us three to have in the courtyard and I can also take her for a drive and to the park with DD but only if we can both navigate getting from the car into the wheelchair. Thank you to all of you for your support and kind words. And even those who weren't quite so kind, you actually helped me to see that taking a rational and non emotional approach to this difficult situation was best for all involved.

That sounds like a lovely plan, OP. Your mum is lucky to have you.

@GoGoJasonWaterfalls that sounds wonderful, what lovely things they've helped you plan. Plus if it's not feasible due to her mobility, it won't be down to you but their assessment which should help her be understanding and see you are doing your best.

That sounds lovely and I hope it all goes to plan.