My Dad is dying - end of life care

[Redhothoochycoocher]

We found out a couple of weeks ago that my Dad has terminal cancer. He was told he has a couple of months to live or a few years with treatment and since then he has not really been told anything else.

He has had a couple of appointments to relieve one of his symptoms but no one has talked to him about treatments options or how/when to start treatment.

Two weeks ago he was told he had appx 8 weeks to live. So now it must be more like 6 and his life is slipping away but we're not further along. Please can anyone advise if this is normal. I am worried he actually has much less, he's so weak, not eating much, can't walk far, sleeps most of the day. He lives by himself and it just doesn't feel right that nothing is being done.

I am going though same thing. My dad started showing symptoms in March and was diagnosed with brain cancer. He was given 6 to 9 months with treatment but we are 4 months in and he can't feed himself anymore. It's insane, crazy how this disease is taking him away but by bit, each day.

I'm really sorry you're going through this and I hear you.

It's definitely hard watching someone decline and feeling like there’s no clear plan; it might help to push for more communication with the healthcare team to get some clarity on what’s next.

I don't know what to expect from the health service myself.
But I'd be getting in touch to chase urgent palliative care. The squeaky wheel gets oiled. Shouldn't be that way, but sadly often is.

I am sorry you are also going through it and hope you have some support around you x

@Cobra71 @DeathByResponsibilities thank you. He set up LPA a few years ago so I'm seeing him this week to make sure it's registered and try and get it enacted so that we can make contact with his GP and find out what's happening.

Really sorry to hear you are going through this op.
I hope you have some rl support. 💐

I'm so sorry you and your dad are going through this.

Has he been referred to a hospice or the District Nurses for palliative support? They would both be able to guide you in what steps to take.

Also has he had fast track CHC funding applied for? This would fund any carers that are needed as he becomes able to do less for himself.

If treatment is still an option at this point, it might be worth contacting the oncology consultants secretary, or do you have a Macmillan support nurse you can discuss it with?

Is your dad at home? If so, GP should arrange carers and also palliative care team as well district nurses. Also occupational health - mum had a hospital bed at home. GP also prescribed an End of Life Package which you collect from the pharmacy but district nurses have to administer the medication.

Thanks for your replies. I'm with him now and have a better overview of the situation. He's much sicker than we initially were told and looks like treatment is not likely to be an option so focus is on end of life care - safety, comfort, dignity.

@Redhothoochycoocher I'm so sorry. Can you contact your local hospice?? They can sometimes provide care at home. Sending hugs x 🙏🫂❤️

So so sorry about your dad. Look at hospice nurses Julie and Hadley on TikTok. Brought me a lot of answers and comfort when I was losing my lovely mum x

Very sorry you are going through this. I lost my father last week but prior to this we had visits from the district nurses. If the palliative team are not yet in touch or visiting please speak to your fathers GP who can arrange a visit to see him if he cannot attend appointments. With their help they can arrange carer visits, discuss additional pain relief, provide medical equipment (commodes and hospital beds if required) and also start the process if hospices maybe required further down the line.
Hopefully a RESPECT form has already been completed advising of your dads wishes, if not this can be done outlining what your dad does and doesn't want.
Take time to process and if you or your father require any further support there is alot provided by Macmillan or your local hospitals and hospices, they do support the families as well as the patient.