Comment on Daily discussion thread: š Wednesday, April 24, 2024
RustyRaven@aussie.zone āØ5ā© āØmonthsā© agoHeās not really able to do anything. He can still get to the toilet and back but the effort leaves him struggling to breathe. Itās pretty horrible really and Iām pretty sure he would have preferred to go a month or more ago.
Iāve been pretty disappointed in the lack of help thatās being given. The palliative care team are providing thickened liquids and loaned a wheelchair but there is no real support. They ask him if heās 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. Itās hard to try and push for anything like respite care because Iām not the caregiver so donāt have any standing and Mumās not particularly assertive. Itās just a really shitty situation all round. ā¹ļø
Eagle@aussie.zone āØ5ā© āØmonthsā© ago
Can you ask that he be admitted to a palliative care unit for some respite? Itās a hard period to go through, especially if heās not accepting of services.
RustyRaven@aussie.zone āØ5ā© āØmonthsā© ago
I just had another chat with Mum about this. They technically can admit him to a palliative unit for respite, but they donāt actually have any places available. Dadās also refused to have assistance with showering etc. in the home. Itās a frustrating situation, especially as we really donāt know how long it is going to go on for. If itās only another week then itās 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.
Eagle@aussie.zone āØ5ā© āØmonthsā© ago
If heās 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 itās the push that they need to get going (I donāt 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, weāve helped the wife with showering, saying itās to help prevent falls or to assess the bathroom or come up with some suggestions to make things easierā¦ After a little bit, wife steps out and all the sudden you have some services in place and weāll be back again tomorrow. It takes some skilled clinicians to make it happen, and sadly thereās less and less of that around. Itās a tough situation youāre in, but donāt be afraid to keep trying to get services in, heāll get to the point he canāt be bothered arguing any more!
RustyRaven@aussie.zone āØ5ā© āØmonthsā© ago
I donāt think heās 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.
Itās 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 heās 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, itās just really frustrating!