this post was submitted on 23 Apr 2024
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He's not really able to do anything. He can still get to the toilet and back but the effort leaves him struggling to breathe. It's pretty horrible really and I'm pretty sure he would have preferred to go a month or more ago.
I've been pretty disappointed in the lack of help that's being given. The palliative care team are providing thickened liquids and loaned a wheelchair but there is no real support. They ask him if he's fine, he lies and they just accept it. Mum would prefer him to be in care because she is constantly stressed and not physically able to assist him if he has problems but they just keep pushing for him to stay at home. It's hard to try and push for anything like respite care because I'm not the caregiver so don't have any standing and Mum's not particularly assertive. It's just a really shitty situation all round. โน๏ธ
Can you ask that he be admitted to a palliative care unit for some respite? It's a hard period to go through, especially if he's not accepting of services.
I just had another chat with Mum about this. They technically can admit him to a palliative unit for respite, but they don't actually have any places available. Dad's also refused to have assistance with showering etc. in the home. It's a frustrating situation, especially as we really don't know how long it is going to go on for. If it's only another week then it's not worth the effort of pushing to organise something, but if It goes on another month or more then it would be. A crystal ball would be very helpful at this point.
If he's still up and about, even if only to the toilet, he probably has a little bit to go yet although things can change pretty quickly. And sometimes it's the push that they need to get going (I don't mean to sound crass, long term community nurse) while things stay the same for him, he stays the same. But changes can trigger changes, and your mum needs some help. In similar situations, we've helped the wife with showering, saying it's to help prevent falls or to assess the bathroom or come up with some suggestions to make things easier.. After a little bit, wife steps out and all the sudden you have some services in place and we'll be back again tomorrow. It takes some skilled clinicians to make it happen, and sadly there's less and less of that around. It's a tough situation you're in, but don't be afraid to keep trying to get services in, he'll get to the point he can't be bothered arguing any more!
I don't think he's got enough breath to really argue now! Walking across the room and back leaves hiim exhausted and sounding like a steam train. Unfortunately Mum is the one who is in the position to make decisions and she is not at all assertive. They will both keep saying they are fine even when they are not. They are also regional and have a lot less services available which makes it a bit harder to organise things too.
It's a frustrating position to be in, but they are both adults capable of making their own decisions so there is not a lot I can really do, especially when I am a couple of hours drive away. I find it a bit disappointing that no one involved is pushing to do a bit more, surely they have a lot of clients that are reluctant to ask for help and should know how to deal with that? It would have to be obvious to all of the doctors etc. that have been dealing with him that he's having trouble with self care, anyone with a nose could tell he is not showering at the very least.
Sorry to vent at you like this, it's just really frustrating!
No need to apologise, I work in the sector and I get it! It's not unusual for people (especially men) to struggle during the time, and their partners are just keeping on keeping on. She's doing a fantastic job honouring his wishes and not rocking the boat. I mean this with the best of intentions; hopefully it won't be long and his suffering will ease. If you need to yell or vent without judgement I'm here.