Is anyone else caring for someone with a short prognosis?

[DustyLee123]

We are half way through dad’s prognosis. I’ve had to go sick from work to provide my share of his 24 hour care. I’m cleaning, cooking, providing personal care, trying to be entertaining, and it’s hard.
It’s hard because, being selfish here, I miss my workmates , my routine, my home, my family. When I get home I’m too tired to clean, I just tend to fall asleep on the couch. But then I’m awake early due to anxiety about the situation.
And of course I’m on sick pay, so there’s a financial hit.
Anyone else going through this?

Hi my dad is newly diagnosed, stage 4 and terminal. He also lives alone. I am so sorry you are going through this, I've recently taken time off work after a whirlwind couple of weeks of appointments, diagnosis, hospital admissions, operation and coming home. My dilemma is whether to go back to work, as he alot better then he was and I know he will likely to get worse so I may need to go sick then. I am also emotionally knackered. It's really shit. I know he doesn't want me to go back and is emotionally dependent on me. Can I ask what your dad's prognosis is and at what point did you decide to go sick to care for him?

He was given 3 months to live, but we were told that he couldn’t be left alone due to his condition, so I gave up work immediately. Looking back, he was ok to be left for several weeks, and we’ve now found out that that was their recommendation to cover their backs, it was not written in stone. I wish I’d gone back to work for a couple of weeks, for my sanity.
My tips are - write down the name/ job position and phone number of everyone you deal with.
Collect phone numbers like the local pharmacy, hospice , district nurses, OT, GP. Have them on your phone as you don’t want to be looking for them when you need them.
When you’re offered a care package, you can do whatever you want with those hours. I was offered 4 visits a day , but you can actually put those together and make it what you want. Don’t say no to funded care, use it.
Good luck, look after yourself, and say no if you don’t want to 💐

And apply for a blue parking badge

OP, if you haven't already done so, apply for PIP for dad and carers allowance for yourself. Due to your DFs terminal diagnosis it will be rushed through (or was in my experience).

Hospice nurse filled in a form for benefits, but we’ve not heard anything yet.

Did you apply for a a social care assessment? I'm really struggling now. Mainly because he is choosing to give up and feel sorry for himself, it's draining and soul destroying.

No we didn’t, a very good friend had a nightmare with her father (longer prognosis than mine) and they did get social services involved out of necessity, but she said they were useless.

I agree about it being draining and soul destroying, I’ve come home today and cried in the car on the way home because, yet again, I had to wipe his dirty bum and clean the carpet where he wet it. I don’t want to be his nurse, I want to be his daughter, and his refusal to go in a home is causing resentment in me.
So I understand 💐

My mum died at the End of January this year ,she was physically disabled and very frail ,my Dad was her carer for years and very reluctant to accept hrlp.even from me and my sister
Eventually though it reached crisis point and he got carer ,s in I think it arranged via the Gp or he was referred by the Gp,but they got everything in place very quickly ,hoists,s hospital bed and four visits a day sadly she passed away a couple of weeks later
Depending on your Dads finances he would have to pay ,but they would do financial assessment .

As my dad is palliative with a short prognosis it’s free care, it’s not assessed.

My friend was diagnosed with metastatic lung cancer in early Jan this year, and given 8wks without treatment (which we found out wasn’t possible soon after diagnosis). As the cancer had spread to her brain it wasn’t safe for her to be left alone. She went to live with one of her daughters, but her daughter was a single parent and had to leave her for short periods to pick up DC from school / clubs etc.

When she started having seizures she was readmitted to hospital and her daughter had to say she couldn’t care for her as it was impossible to not leave her alone ever, and leaving her alone was dangerous. When she stayed with me one weekend after diagnosis she was about to put the electric kettle on the hob. Thankfully I was sleeping with one eye open and jumped out of bed quickly and prevented a fire.

The decision was made for her to go to a care home, as at this point she still had a month or so of life, so they said it was too soon for a hospice. It felt awful, as she was only in her 50’s but she had wanted to go to a home / care facility and it was good as it meant her daughter could be a daughter, and not a carer / nurse. It was £1500 a week, but thankfully she didn’t pay as she had minimal savings and no property to sell.

So hard for you if your dad doesn’t want that. Can you request carers in 3-4 times a day? At least to dress him, help him shower / toilet so family doesn’t have to do this. Such a difficult time for you. I know i’d struggle so much without work too.

edit - sorry I can see you’ve been offered 4 visits. Sorry missed that. I guess there will still be times outside of those hours that personal care will be required.

I guess there will still be times outside of those hours that personal care will be required.

Yes exactly. If he was incontinence in bed it would be great, but he still wants to get up on the commode, so we need to do it.

For anyone else in this situation, if you’re offered funded care, take it. I was offered an hour visit four times a day and said no because it’s no use to us, but the care company said we can use those 7 x 4 hours a day however we want. We can put them together and make it into night cover, or day shifts. You don’t need to have 4 visits a day.

I've been told that we will only be offered 2 care visits a day. I don't even know how many hours that would be. I think the lack of palliative care is disgusting, they don't seem to offer you any reassurance or be upfront about the support you will get. They just keep saying, there are only 12 beds in the hospice and you would go on a waiting list nearer the time. I think dad wants to stay at home, but I am so scared and worried. I've never done this before, and it will only be me caring for him. 2 care visits a day seems like nothing.

With my mum although she had 4 visits a day they just came in and got her washed and dressed etc most visits were probably 20-30 minutes maximum obviously though needs will vary.