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 to hear that your Mum is so ill. I don’t think you sound flippant at all - my Mum was my Dad’s carer and, after he died, I read through mine and my Mum’s text messages to each other. Someone on the outside might have found us irreverent or even callous but my Dad was loved. It’s easy to burn out as a carer.

It sounds as though your plan is a good one and that, frankly, you really are doing all you can.

Do you have a habit of making dickish comments or are you making a special effort today?

@GoGoJasonWaterfalls my elder children were 9 and 7 when we went through this and I absolutely shielded them as much as I could. It's totally the sensible thing to do.

I'd never thought of this! What a great idea. I'm going to look into wheelchair friendly taxis now. Thank you!

You're most welcome, OP :) I'm glad it might be helpful. Here's another tip to go with it. Unfortunately we were caught out several times initially by taxi firms that said they would send a large cab - promised - but actually just sent a black cab, which wasn't big enough. My sister found a local independent taxi driver with a minivan, and that's the one we used. He was great, and would take us anywhere we wanted to go. So, to avoid having the same issue, it's prolly a good idea for you to try to find a similar driver with van. Good luck again to you and your mum

I've looked into this and spoke to a specific wheelchair friendly taxi place today. Told Mum and she's delighted. So we're sticking to home and then afternoon tea plans on Saturday and then into town on the Sunday so she can buy a watch (??) and treat me and DD. She's very excited to be out and amongst people again and hasn't been into town since January. It seems she's now more excited about that than going home!

That's brilliant news, OP! I'm so happy for you all :) I'll tell my sister, as it was her idea to look into the mini van idea for our aunt. She'll be very happy for you too

That sounds like a fabulous plan. Hope you, your mum and dd enjoy your special time together. Really glad you were able to make plans that cater for all of you

Well done OP, that’s a brilliant update. I’m so glad this thread brought some helpful ideas (amongst the shitty comments).
Really hope it goes well this weekend x

Great plans, OP, I hope your weekend is going well.

I think this idea of shielding is a very interesting one, and can't be put in a right or wrong box. Many people on Mumsnet have seen traumatic things with their parents as adults and are very traumatised by it, just ask on any thread about terminal illness and death. We aren't, in general, around very sick or terminally ill people a whole heap in our society or dead bodies for that matter, and it can be very shocking to see a beloved parent or grandparent looking extremely different- my grandpa looked like a skeleton to me in hospital, I still loved him but that image stayed with me. As someone who has had to hands-on care for my husband in front of my children, it can be very upsetting for them, all the smells, the sights, the stress and also it inverts the normal idea we have that our parents or grandparents are there to care for us so it seems more shocking I think.

Anyway, of course pain, stress, complete incontinence, suffering, as well as happiness and fun are part of life, but not many people would want to fully expose a child to that, or indeed themselves if they had a choice. I think it's odd to think if you just act natural children will just accept it, there's some plain difficult bits about caring that are extremely hard to accept, as well as requiring privacy for the person cared for. To not think this through, or make out people aren't including children is very odd.

I hope your weekend went well. I've come back to this thread because I wanted to reassure you that the vast majority of people have no idea what is involved in caring for someone with mobility problems. You absolutely called it correctly.