Comment on Daily discussion thread: 🍃 Wednesday, April 24, 2024

• RustyRaven@aussie.zone ⁨7⁩ ⁨months⁩ ago

  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. ☹️

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  • Eagle@aussie.zone ⁨7⁩ ⁨months⁩ ago

    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.

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    • RustyRaven@aussie.zone ⁨7⁩ ⁨months⁩ ago

      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.

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      • Eagle@aussie.zone ⁨7⁩ ⁨months⁩ ago

        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!

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