Struggling to get home care set up for my terminally ill Dad

FormerMember
FormerMember
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My Dad (84) came home from hospital last week after being told he was terminally ill - his bladder cancer has spread to his liver and is affecting his lungs and stomach too.

We kind of already new.  He was in hospital for fluid on his lungs 5/6 weeks ago and they discharged him with a letter saying they could see lesions of a metastatic nature on his liver  - but no-one discussed this with him and no-one seemed to identify that this hadn't been diagnosed.  I had to make numerous phone calls to push for his urology oncologist to see him again after only seeing him 2 weeks before (and unaware of these tests at another hospital).  When my Dad saw him then, he had declined so much and was so ill, he was admitted as an emergency - that's when they did more tests and told my Dad properly.

I feel like that cost us 5 weeks of getting my Dad sorted with palliative care at home; 5 weeks of my Dad struggling through, thinking his bladder operation (laser treatment) would help him feel better.  I'm so angry about that.

Now we've got him home, we're struggling to get his carers reinstated to help him get washed and dressed in a morning.  He hasn't been able to have a shower since he came home.  My Mum (81) is doing her best, but she had a heart attack just 3 weeks ago and shouldn't really be doing it (she's strip washing my Dad).

I just don't know where to turn.  The hospital were meant to have reinstated the care before he was discharged, but there's no sign of it and a social worker has called to say they don't know when it will start.

It's not good enough.  If my Mum ends up having another heart attack, it'll be on their shoulders.

To add to the problems, the medication that Dad was sent home with needs putting on a repeat prescription.  He's only 4 days left and I can't get through to his useless GP practice.  They've been so awful through the whole pandemic (my Dad had heart problems last year, has macular degeneration and is deaf).  They've made it very difficult to access primary healthcare and now I'm trying to get through to get his prescription updated and I've dialled over 100 times this morning and I can't even get into a queue.  I really don't know what to do, who to talk to or anything.  I feel like I'm hitting a brick wall.  My Mum is deaf too, so the phone calls are all landing on me.

I feel so useless. I'm disabled and physically can't do much.  If I can't do the admin on the phone, what can I do?

So in short: how do I get carers coming to my Dad ASAP and how do I get his prescriptions sorted when I can't get through to the doctors?

  • Hi  and welcome to the online community

    I'm sorry to read about all the problems that you're having in trying to get help for your dad. You don't sound useless to me at all, just someone who is trying to do their best.

    I hope you don't mind me suggesting that you copy and paste this post into a new one in the supporting someone with incurable cancer group, which I can see that you've joined, as I think you might connect with others who have had to deal with a similar situation there. If this is something that you'd like to do clicking on the link I've created will take you straight there.

    It would be great if you could pop something about your dad's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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