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I've mentioned a couple of times recently having some "real life" problems, but I haven't really wanted to talk about it much here while I was still processing everything.
My Dad has been diagnosed with lung cancer and does not have much longer to live. My Mum also has a fair few health problems and our current plan is for her to move back to Melbourne and share a house with me so I can provide more assistance. I feel a bit like I'm in the eye of a hurricane at the moment, everything seems perfectly normal right now but I'm constantly on edge waiting for that to change.
It feels like I should be doing something but there's not really anything to do at the moment, so I'm researching and making plans for every likely future possibility I can think of. Which probably means something completely unexpected will happen instead.
I know it's an unpleasant thing to think about but has the will and funeral been sorted?
They have. Everything was updated for both Mum & Dad last year after some health scares. The timing and details might have been unknown but it is not really unexpected at this point.
That is a great deal of shite at once. Net hugs.
I'm so sorry for that you're going through ❤️
I'm really sorry. This sounds like a lot to take on.
It feels like I should be doing something but there’s not really anything to do at the moment
With kindness, I disagree. I think you should be spending as much time with your folks as you are comfortable with. Bugger everything else right now.
I have been spending more time with them, but Dad can't do anything now, he can't really speak and is basically just sitting in his armchair with the TV on 24/7. It's not a very pleasant environment unfortunately. I'd love to be able to take Mum out to get away from it for a bit but she doesn't want to leave him alone for any length of time. We've pretty much all said our goodbyes because he could go at any time and now we are all just waiting.
Can you read to him? share some stories of good memories when you were growing up?
I just. I think we should all be so lucky to pass surrounded by love.
Unfortunately we really don't have that sort of relationship. He has never really shared stories or anything with us and in many ways I barely know him. I guess he has taken being part of the "silent generation" to heart.
get a little white board and eraser so your dad can communicate
play board games, play cards
can you go on drives?
and waiting is horrible, horrible for him too,
also, respite care so your mum can have a few hours to herself, organise thru the hospital
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. ☹️
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.
agree, spend time :)
So sorry to hear that.
I’m very sorry to hear it.
If dad doesn’t feel up to talking or is unable to interact much, perhaps you might help mum with any practical tasks? Such as cleaning out storage spaces, checking for slip or trip hazards, putting any out of reach items down lower so she doesn’t need to get up on a ladder, paring down non-sentimental belongings, or starting to put away/make decisions about his stuff.
She might have trouble managing after he passes and it might be emotionally easier to do it more gradually, whether you do it together to support each other or you do the practical stuff while she sits with him.
Please ignore this if it comes off as insensitive.
I just thought it might take something difficult off mum’s plate with her health.
Edit: Also you may be able to hire a bedside commode from a mobility aid shop to make his journey easier and reduce the fall risk while going to the bathroom. It might ease mum’s mind a little.
We will definitely be going through stuff to downsize in future. I don't think there will be many decisions about his stuff, most of it is going straight in the dumpster. I think we will all take special joy in finally being able to toss the broken toaster in the shed that he for some reason decided was valuable enough to take when they moved house 🤣 Fortunately the worst of his junk hoard was dealt with before they moved, but he did manage to bring over a surprising amount. Mum mostly has an oversupply of linen.
I have been helping with the cleaning a bit too, she is supposed to have a fortnighly cleaner through aged care every fortnight but they are not very reliable and if the cleaner can't make it for some reason it ends up being a month.
So far Dad has refused to use any sort of mobility aids. He looks incredibly unstable and has already had a couple of falls but unless he's completely physically unable to get there I don't think he'll accept any sort of assistance.
I’m really sorry to hear.
Sometimes there isn’t anything you can do for the moment until the moment finally arrives.
You can do some forward planning but it might also cause you additional stress of all sorts.
Perhaps spending time with your dad while you can might be something you can think about with the time he has left if that is something you can do. Time is precious sometimes and unforgiving so making the best use of it while you can will never be a mistake.
I’m also sorry to read what you’ve been going through. 🖤