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??

My Dad died recently at home under similiar circumstances. We had a whole package of care at home to allow him to do this which took time and money. Even then it was bloody hard and at time, my sisters and I really struggled. Your mum coming home for the weekend sounds like too much. Sorry to say but your plan sounds safer for all involved.

Sending you and your mum lots of love. It's a tough situation.

I wouldn't do this. You have to be realistic and I don't think it would be safe for your mum, and quite possibly your child too.

We had this when Dad was terminally ill - going 'home' in his head also meant that he'd feel better, like he wouldn't be ill any longer. He also by that stage didn't have much understanding of how much care he was getting. You could talk to the hospice about her wishes and see if they are able to facilitate a visit, but without you being the carer or on your own?

FWIW Dad did come home to die but with a team of people to care for him, ambulance transport and a load of specialist equipment from the hospice.

I would be surprised if the hospice allowed this, she needs two carers for transfers and sounds like she could really do with equipment like a Sara Stedy to help with moves between the bed and the commode.

It's hard being where you all are now but I don't think you are unreasonable to say no.

Have a chat with the hospice. They are generally very sensible people.

If your DM needs two to transfer and a heap of equipment the hospice is very likely to say no, as kindly as possible.

It's not uncommon for very poorly people to want to see home again but not have insight into how much support they will need to do it.

My Gran tried something similar and it was a nightmare. It emphasised to her how much she had declined since she was at home and how ill she was. This was further rubbed in when she saw a neighbour who didn't recognise her. She was horribly embarrassed at how dusty it was, how musty it smelt and, having always been a generous hostess, really upset that there was no milk in the fridge for a cup of tea.
The only positive was that it did stop her moaning about the home she was in as she really appreciated all the care she was being given.

You think that until it happens to you.

Then you realise how weak people are at stage 4, how heavy they are to get up from the floor if they fall, how their brain changes and they are no longer able to control impulses and can do unexpected things like spitting at people or not having an internal filter, arguing about eating and losing rational thought. Or developing a cough on friday, being spaced out on high powered drugs by Sunday and dead on wednesday.

People think that until they see what dying of cancer looks like. It isnt all frail people sitting around quietly trying not to be a nuisance.

I think you should think about hiring some help and trying to facilitate something. A whole
weekend is too much but maybe one day and
night in her own home again. Enquire at the hospice about care agencies they recommend or Macmillian nurses?
I think with terminal cancer her needs trump yours but not by putting yourself in a situation that won’t be manageable alone. Also could you take someone with you to help with your DD? Your DM will likely never be stronger so don’t miss the opportunity completely.
Ultimately you can only do what you can do physically and mentally so known your limits.
I don’t think trips with your DD in between visits are really a consideration here. Your DM should be priority at this time.

Thanks. That's an absolutely wonderful thing to say to a woman about to lose her last living parent.

If the weather is still good then you could look into trying to take your mum out in the wheelchair, even if it's only round the grounds. The staff will manage the move to the wheelchair and back.

It's very unlikely that your mum is going to be getting stronger, and much more likely that she'll continue to deteriorate. Try to help her to make the best of what time remains to her - a bit of sunshine and fresh air on her face could be a massive boost for her.

FWIW I don't think you should be putting your DD first here. Obviously you need to be sensitive to the fact that she's a small child, but she has a lifetime ahead of her whereas your mum is reaching the end of her time. If you're afraid that DD can't cope when you visit your mum then is there other family who could look after DD?

I've been through this with elderly relatives myself and know how hard it is. Good luck OP

Oh piss off, death of cancer is awful and people need a break from the stress and trauma.

I doubt the hospice would even agree. The pp suggestion of an hour in the park sounds good.

I did wince at the complaint it would get in the way of sightseeing, but I expect that was stress talking.

This.

No one can remain on the tightrope of the horror of death from cancer all the time.

It sounds like it could be unsafe for your mum tbh, what have the hospice said about the plan? Is your mum having oxygen? Sadly, having lung cancer and requiring hospice care her condition could change quite quickly.

Can the hospice loan you a hoist to help transfer your mum from bed to chair, chair to commode etc .

You think me deciding not to take a completely immobile terminally ill woman home alone for three days while simultaneously looking after a five year old is a wind up?

Our local hospice provides "Hospice at Home" with equipment plus care/nursing support. Worth asking if yours does similar maybe?

Would they bring in all the equipment just for one weekend, I wonder?

It's not that it would 'get in the way' for Christ sake. I'm taking DD up because my DM has not seen her since February and misses her. But if I take DM home then we can't leave the house which is a lot to ask of a five year old child for three days.

And like a PP said, being with a five year old noisy child for three days is a lot. Even one day would exhaust her.

Do the charities have any grants they could give to help pay for petrol if you are struggling? Any time you can spend with your mum is so precious

Gosh OP, that sounds like an incredibly difficult situation.

I think if visiting is allowed any time, as it usually is in hospices, I'd explain to your mum that you're worried about your daughter (as hopefully she wouldn't want her to worry either) and then you can fit a couple of shorter visits in each day hopefully.

I assume you plan to take your daughter out and about because you're not sure how you'd keep her occupied in your mum's house all day, which makes sense to me.

Some of the responses on here... I don't think they've had to care for a terminally ill person before.

It's not just taking someone home and maybe giving them a hand to get out of a car seat. It's probably an ambulance needed. And a whole host of equipment like wheelchairs, hospital bed, commodes, seat raisers. Yes, hospices loan hoists (we had one for Dad) but you have to be trained to use it safely and we had to have two people (adults!) present to operate it. That doesn't sound feasible for a weekend. You'd then need to hoist onto the commode and back again each time they need the loo (been there, done that). I'm not sure how you keep a five year old out of the way during all for that and I imagine it would be rather upsetting for them as well as the grandparent.

Obviously, be guided by the hospice but it does sound very much wishful thinking.