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??

I’m sorry you are going through a tough time…..you and your mum.
if you are not trained in moving and lifting an almost immobile person then think carefully. There is a reason that nurses do it in twos and they are properly trained. If you do your back in you are no use to either your mum or your daughter.

Well said. I’d love to know where all these carers are apparently coming from because according to people here there is a hotline you ring and loads of them just turn up!

Never mind that there is a National shortage of them or that there are thousands of patients ready for discharge bed blocking because there are no available carers to support them at home so they are stuck in hospital.

But this is not out of hospice end of life care. This is a three day visit home after which she will need to go back to the hospice. If we were looking at imminent death (ffs, as if I'm having to type that) then of course everything would be done to accommodate her wishes including all the care staff and equipment being in place well beforehand. But I'm not sure this can all be done by Friday this week and for such a short period of time.

Mmm, it says a lot that the people who've given their (helpful, valid) perspectives on caring for a dying loved one at home with specialist equipment had them there for the duration. Not just a weekend. Getting this stuff isn't like ordering something on Amazon!

Yes I see what you mean.
My mum went back to the hospice as she just wanted a short stay ( a week ) to see her animals mainly!

However we sorted it in a day and Mac nurses were amazing.

The whole toilet issue is the main problem, but again, I’d talk to the Mac nurses.

We got advice from the hospices re private full time nurses,

If you’ve spoken to the hospice and you’re happy with your choice then alls good.

In terms of kids I had my older 4 yr old ( 3relatives all in hospice in 18 month period ) with me most of the time and he was great. My twins (1yr) were at nursery. It was hell and very stressful. But hay

Good luck OP

If it were me, I would ask hospice of they could facilitate you taking her for a drive in the car. Could they put her into depends in case of accidents and then they put her into the car. You and her and DD go for a drive around her old neighborhood, any places she would like to see, maybe stop for a quick ‘car tea party’ (have a thermos and some biscuits in the boot) and then back to the hospice when DM is flagging so the nurses can help her out and back to bed.
With a bit of luck she will be able to tell DD stories of ….when she had to chase you down the road when you were five and being very naughty and thats the step she made you sit on until you were sorry…
Wishing you strength and fortitude for whatever you manage on your weekend with her, you sound like a very caring DD

YANBU

I've tried something very similar. DM on the floor several times and me without the technique to get her up. Several friends called in to help, she's crying on the floor. Then I felt like a terrible daughter. It's too much for you. Tell her you can't do it or get the hospice to say it won't work on your behalf. You are not terrible! 💐💐💐

One thing not mentioned so far is medications. I'd expect your mother is on various and you'd have to be incredibly careful about storing them with a 5yo around.

You are an unfeeling weapon. How dare you address the OP in this way? Clearly you have never ever experiencing losing your mother to cancer, and if you are very fortunate, you never will!!! You haven't got the first fucking clue, have you?!

I have, it's hell on earth. My mum died just before she turned 63. Sixty-fucking-three. She wanted to die at home. We wanted to honour her wishes but it just wasn't feasible, for her sake as much as for ours. I lived over an hour away and my kids were just 9, 7 and 2.

Maybe I will change my mind when my time comes but I can't see how it matters where the hell you die - you're still dead!! There's no point in trying to guilt the OP to bring her mum home, when it's abundantly clear that her care isn't something one person, even with support, could manage.

FWIW we were trying to get a home care package organised but couldn't do it quickly enough and tbh, I'm glad. It would have been distressing for her, and for all of us.

@GoGoJasonWaterfalls please just ignore those horrible people trying to guilt you. You have enough to deal with. During mum's illness, we did Friday night/Saturday. This meant me working all day, taking the kids to swimming, packing up the kids and the car and driving for an hour. I wanted to spend as much time as I could with mum, of course I did, but if I am honest, I hated the sleepover part of it. I had to sleep in a room with beds pushed together with all three children, and I could never sleep properly. I did suck it up, and said nothing to anyone - until now!

I hope you can find some kind of compromise. You have my total empathy. It's a horrible place to be, and don't let anyone tell you how to deal with it! xx

This is the best suggestion on the thread x

I can’t see how it’s possible. There’s a reason your mum’s in the hospice and that reason is because she needs concentrated, professional care. It won’t miraculously not be needed for a weekend. If I were you I’d ask the hospice to tell her it just can’t happen, neither she nor you are up to it. Get them to be the bad guys, it won’t be the first time and then pull out all the stops to create a wonderful weekend where she is.

I’m so sorry you’re going through this @GoGoJasonWaterfalls . And that some absolute arseholes have posted to your thread. 💐

Ex-carer here, and I'm sorry OP- sorry that your mum is sick & that you're witnessing her decline but...can't you make this work as a one off?! It's a small final thing for a sick parent, and may be the last thing you could do for her.

During COVID, I cared for a lady with cancer and other issues, and her daughter wouldn't visit as her mother was "frail" and she was scared she'd pass on germs etc. All her mum wanted was to say goodbye- spend the day together- and it never happened. I'm sure the daughter regrets this now. It was very sad.

Could you not call the local care agencies to see if any palliative carers are available for a short assignment- the trip your mother makes to spend time with you? If it's not possible it's not possible, but at least you tried.

And for anyone saying you can't just grab carers out of thin air- yes, the numbers of carers have dwindled, but the agency I worked for often added me to last minute shifts caring for end of life clients in their own homes.

Worth a try 🌺

Not you OP, but as an ex-carer, I have to add that in general in the UK, families are atrocious at looking after their own tbh. None of us want to deal with anything yucky or messy or upsetting. We just expect someone else to do it for ear enough minimum wage.

And yes, I am an ex-carer for a reason. I couldn't do it again. I found it very difficult- although a caring person- and wouldn't be able to do it for one of my family members, so I am honestly not judging in any way. I get it 🌹

And for anyone saying you can't just grab carers out of thin air- yes, the numbers of carers have dwindled, but the agency I worked for often added me to last minute shifts caring for end of life clients in their own homes.

My desperate battles to get carers for my DH must've been a figment of my imagination then. Carers being given last minute shifts were the reason a lot of DH's care was rushed and inadequate or, even worse, cancelled at the last minute leaving me to struggle with two children and a husband who needed transferring to the commode by little old me. Alone.

OP I think you’re being honest and realistic. When my mother was dying of an aggressive Leukaemia she wanted to go home to die, so I looked after her at home for 8 weeks or so before she died. My mother had previously been my father’s carer as he was also dying of a lung disease and was on oxygen 24/7, so I also had to look after him at the same time as her. I also had 4 children, but was fortunate that we lived next to her, and the youngest was 8. Even with nurses coming in daily to look after her syringe driver and to wash her etc, and my brothers and sister in law doing as much as they could, it was exhausting and relentless. For the last two weeks of mothers life we had Marie Curie nurses coming in to stay overnight so that I could get a sleep. Fortunately I coped and was with her when she died in her own bed, with a Marie Curie nurse supporting her.

My father deteriorated soon after and was hospitalised a few weeks after my mother died and when he was ready to leave the medical ward the doctors said he needed a care home of some sort, that I wouldn’t be able to look after him at home. He was devastated and pleaded with me to take him home (he and my mother were only in their early sixties when they died). So I insisted to the hospital that I would manage and I felt that I couldn’t refuse because I had done this for my mother. I took him home to my parents house. After a couple of months I realised that the hospital was right and I just couldn’t do it. His physical needs were very different to my mothers. He really did need two people there at all times. So he went into a small local facility where he was looked after extremely well. I visited 6 days a week until he died three months later (five months after my mother)and he was happy while he was there.

Please don’t let anyone guilt trip you into something you know isn’t the right thing for you - and for your mother’s particular situation. Unless they have lived through that experience people have no idea how traumatic, gruelling and upsetting it can be. It’s not like the movies.

Try to visit your mother as often as you’re able to. Let her see your daughter for as long as they can both cope. You may just have to be quite firm and honest and say Mum, much as I want to, I just can’t do it.

I’m now 61, my mother died at 62, so of course it git me thinking about death etc. I’ve told my children in no uncertain terms that should I ever become terminally ill I do not want to be looked after at home. How you have described your mother’s bedroom in the hospice is exactly the type of place I would like to be if the need ever arises.

If you can't manage the weekend, I'd have a chat with the hospice and try and work out what can be done.

I've been with my mum nursing several relatives when I was a kid - albiet not quite as young (GM 7, Auntie 13, GF 15). I remember sitting next to my aunties bed waiting to see if the next breath came, and pushing my gf in a wheelchair, amd before that, him holding on to me one side andy mum the other. All died from cancer. I was likely shielded from some of the worst, but those times together were so precious.

5 is a tricky age - but she's old enough that she can understand the priority is GM for the weekend, and that you have to with round her needs. It's also old enough for her to be sent into another room for 15m whilst you sort personal care, if that's your preference.

The difficulty isn't your 5yo getting bored, it's whether your can physically manage the lifting etc. That depends on the condition of your mum honestly. My mum (petite, not some Hulk like superwoman) was able to manage with the 3 relatives I've mentioned, but until very near the end, they were able to assist with their transfer to a commode next to the bed. They could partially weightbear. I suspect that I'm a clinical setting, they'd do have 2 people helping, but that's because it's their workplace and health and safety are really important (and they are doing it all day, every day for years).

I think you maybe need to have a chat with the hospice staff. Coming home for the day, or an outing to the park in her wheelchair may be more achievable.

If i could manage it though, and was content I wouldn't be putting her at extreme risk (falls etc), I'd try to bring her home overnight it I could.

It's also old enough for her to be sent into another room for 15m whilst you sort personal care, if that's your preference.

It clearly isn't old enough that she can be relied on to go along with it, especially if she finds it scary and/or interesting.

I’m sorry OP, but every few weeks is not enough…I would move heaven and earth to visit more often.
I don’t agree about a five year old being scared to see nanny unwell or not able to spend a few days with big outings. Just entertain her with other stuff. You are wildly underestimating the emotional capabilities of a five year old, she is not a toddler anymore.

Why do people keep using the 'move heaven and earth' phrase over and over? Is it listed in some sort of handbook for the insensitive?!

It is not possible to move heaven and earth and nor is it possible for OP to safely provide sole care for her mother. People can talk all the big talk they want about what they would do but it doesn't change reality.

Does this hospice have home care assistants, and are they affordable for you (or covered by NHS...I'm in the US, and only have a vague idea of that). I'd check with them first, and see if it can be made possible. If not, perhaps they could gently tell her that one person alone is not capable of giving her the care she needs.

And perhaps, just perhaps, a day visit to you in her home would help her. No matter how good a hospice is, it cannot be home. A 4-hour visit might do the trick, especially if there is an assistant available for that four hours.

You're being realistic, your mum isn't. Round my way they don't usually admit to the hospice until death is near unless it's just to tweak medication and get them feeling a bit better. I don't think anyone stays (lives) more than 6 weeks, many a lot less.

I would have thought that all that upheaval could finish her off, she sounds very ill. Sorry to be so blunt.

Best all round if she stays in, I would agree that your daughter may find it frightening if you're all at home.

What if the home isn't suitable?

What if there are steps?

She won't be in bed - will the chairs be suitable for her getting in and out of?

Is there a commode?

So many things you cannot put in place, just like that for one day.

It really doesn't work like that

She was just talking about getting her daughter out, not going to a theme park!