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??

‘It would also mean me and DD can't go out for the day’

It’s there, in your OP. I’ve been nice. Don’t pick a fight with me FFS.

If she's immobile without assist x 2 with a zimmer she's going to need 4 x a day care plus a hospital bed plus a commode to get home. When someone is receiving end of life care they will move heaven and earth to get things in place quickly but usually on a basis of to get them to where they want to be for to die. Sometimes family elect to take someone home rather than wait for carers but I doubt you would manage that yourself/with a young daughter.

I would call the hospice nurses and see what they think. I'd have real concerns about getting her home safely but I'd want to tie that in with making sure her wishes are met. Can there be a compromise? If she can tolerate a wheelchair for a few hours can you get a wheelchair taxi to take her to her house for a a cup of tea in her own kitchen? (Don't consider if there is steps to get in!) Or does she have somewhere she would love to see like the gardens of the hospice?

Can you bring her home for the day? Make it a bit of a treat, not sure how unwell she is but perhaps a film or a board game. Tea and cakes.

Might be easier to get a carer too.

I don't know, that's why I said op should ask 🤷

Don't worry op I knew what you meant by going out for the day. Five year olds are very active and loud. You need to take them out and give them a run ,or else they are hard work at home and especially when you need them calm and quiet to visit a dying relative.

I'm so sorry about your mum. There's no good decisions in this situation, you just muddle along.

I nursed my husband throughout the terminal phase of his cancer. Our house was fitted with all kinds of equipment to enable that, including a hospital bed in what was the dining room. And you don't phone up one day and get it all delivered the next, and then uninstalled and collected three days later.

Some of the suggestions on this thread are so in the realms of fantasy land, that it's unbelievable. Oh, and it took me, my two adult daughters living with me, carers in twice a day, and daily district nurse visits to accomplish it too.

One adult and a five year old? No.

Some of the suggestions on this thread are so in the realms of fantasy land, that it's unbelievable.

They are indeed.

YANBU.

I'm 40 and I found my DMs final weeks horribly traumatic when they needed a chair and commode. We had 48hrs without help once and it involved multiple falls and dealing with toileting.

We were all in tears by the end of it, it was horribly upsetting as an adult. The hospice staff are very well trained in the logistics of these things. We were not. It was awful. No way I'd involve a small child in that.

I completely agree with you.

Look, you don't like any answers that go against the grain. However you asked. So I'm going to answer honestly. You're 5 year old will cope, so why don't you try and bring her home for one day. No nights or long weekend. She is dying and would like to go home. Imagine you asked your kid for something when you were dying. Do you have someone who can come with you just once, or carers support for a day. Maybe rather than deciding its impossible see if you can find a way to compromise. How will you feel if you don't try?

I know it's extremely hard, these situations are, but at least she will know you did what you could. I'm not taking away from what you're already doing, I've done distance for cancer and it's hard. But I have guilt, you don't want it trust me.

Eh? I didn’t say anything about sponging. Are you drunk?

I hope things go well when you visit your mum but your responses are ridiculous, so I’ll leave you to it.

I'm a fully grown adult and I have PTSD over the realities of assisting an immobile dying parent with toileting in their final days. It can be horrific.

I absolutely would not inflict this on a 5yo.

You are definitely not being unreasonable. Ignore the guilt-trippers who have clearly never had to deal with an immobile elderly parent nearing the end of their life. I have, twice, and I know that there is no way that you could do this without a huge amount of equipment, extra carers to help, and detailed advance planning. If you just try and do it alone, you are likely to end up with your mother on the floor waiting 12 hours for an ambulance, or worse.

If it is really your mother's dying wish to spend one more day or night at home, then maybe you could manage it with a lot of planning and help from the hospice, but definitely not single-handed, and not while also trying to look after a five-year-old. Talk to the hospice and ask what might realistically be possible. A daytime-only visit might be slightly easier than anything involving an overnight stay, but a lot depends on the accessibility of her home and availability of carers.

Thank you for your kind and considered response. I was reacting to the suggestion of three days without looking at alternatives like one day or afternoon at home which might be a more realistic possibility.

What exactly do you mean by your 5 year old will cope?

Because yeah sure, it won't kill her and there won't necessarily be any lasting ill effects. She's still however going to be a 5 year old, behaving the way that 5 year olds do with a 5 year old's level of understanding, around a frail dying woman who OP has told us will be exhausted by only one day with her.

The practicalities here are a problem, because OP is one adult who would need to be in sole charge of a child and a terminally ill person currently reliant on substantial specialist equipment to be able to manage basic functions. Exactly what compromise do you think there can be in this situation?

Can you leave dd home with her dad and you take mum home for the weekend, with help from carers?

I think it’s more important your mum gets a path visit home than you dd making memories.

I do understand if it’s not feasible though, it sounds like a lot of work. I just don’t think the reason to say no is due to a 5yo if there is alternative childcare available.

OP I am so sorry about your mum.

Ignore the bitchy and unkind responses, they are talking out of their arses and have no idea what such care really involves.

If your mum requires two to transfer then please do not do this- she would need OT equipment to enable this safely and worst case scenario, if you try to do it yourself alone, she could end up falling during a transfer and breaking a hip or you end up with a chronic back injury. There are health and safety reasons why mobility/transfers need to be carefully assessed in palliative care and this does not sound safe at all with you trying to juggle this all alone with a 5 year old. Who is going to watch your 5 year old whilst you are helping her with all this?

I would say no to her going home, BUT, I would see if I could bring in some of her favourite board games, music, movies and lovely food and try to have a nice get together in the hospice instead. Hospice staff are absolutely lovely so I am sure they could help you do this and arrange something really nice.

Do those of you having a pop at the OP have personal experience of being 'cared for' by people who mean well but in fact cannot meet your care needs?

I have.

Until you have, I'd suggest you shut the fuck up.

Its fucking horrible, realising their out of their depth, being bastarding uncomfortable, having to have your loved ones struggle to do the personal care you require, and them realising they are doing it badly... or not realising but you can't fucking ask them to sort out your knickers AGAIN because they're rubbing your fanny raw, you can't tell them sorry, you didn't actually wipe my arse properly and now shit is making the skin burn. Having to ask them to readjust your position again, trying not to go on and on about how the mattress is hurting your arse or you just can't get in a position that doesn't hurt.

It is awful.

OP's mum THINKS she wants a weekend at home but in reality, she really doesn't and would not enjoy it and I very much suspect the hospice would not agree to it anyway.

Far far better that OP does exactly as she plans, several hours there each day doing nice things within her Mums capabilities, where shes safe and as comfy as possible.

I nursed DH through terminal cancer and a stroke with two under twos in the house, we had carers three times a day (we could've had four visits). Support was minimal as care companies are struggling and the hospice we came under was an hour away. I had an inkling of what I was letting myself in for as I had worked in a hospice but it was a dark, lonely, scary place to be in. I don't regret what i did but it was the hardest thing I have ever done.

Sending you much love OP.

This is what I'd rather do. I can concentrate on her and not feel like my daughter is scared or unhappy or nervous of Nanny. To have to sort Mums toileting in front of DD would be too much for both of them. If it were just me, I'd do it, I'd manage. But I can't look after both of them at the same time.

So well said.

Could your partner come with you for a day With Dd, then take her home and you have some time with your mum alone? I say this gently but I would pull out all the stops to make this happen. Your Dd shouldn’t come first in all this.

I can't imagine for one second a hospice agreeing to this. She's not only going to need physical care, but equipment in place as well as trained carers. Then add in a hospice or community nurse for medication.

It's not going to happen, OP, but I'd let your DM imagine it if it brings her some comfort. My Dad died in a hospice and we were unable to arrange taking him home due to lack of care support.