Dad has stopped eating.

[Cocolapew]

My Dad hasn't really ate anything since the beginning of May. He says he just has no appetite.
He has had bloods done at the GP and then got called for a lot more. A gastric consultant is going to phone him next week for a telephone appointment after he has reviewed the blood results.
I feel that him and my mum aren't being pro active enough. I went around today and he was in bed. I said to my mum that I thought he should be in hospital and she said that she was going to get my dad to phone the GP tomorrow.
She admitted he fell at the weekend but was on cyclizine and was hallucinating on it so has stopped it. If I had knew when he fell I would have phoned an ambulance.
Mum did say she told him he was going to starve to death if he didn't start to eat.
Its such a drastic change in him. He has always been super fit especially for his age.
He hurt his ankle playing golf and then took siactica and has gone downhill so very, very fast
I don't really know what I want from writing this. I'm just so worried and at a loss
I don't know if my mum wants me to take control over the whole thing or not. She's usually pretty on the ball but neither of them even know what the bloods are for or why he's getting a phone appointment.

Steroids did help my mum when she had no appetite and was losing weight but they sent her a bit manic and she was sending us all bossy emails at 3am so watch out for that one!

He can't use his phone never mind send emails 🤣.
We've just been told he's only allowed one visitor due to rising covid cases, so it will be only my mum allowed

We had my mum at home mainly because of COVID and the 1 visitor per patient rule.
It was hard but we had night carers in doing 12 hr shifts, the max 4 times a day standard carers, then twice a day district nurses.
The house was a bit like Clapham junction but all the family were able to see her which meant a lot to her.

It's a very individual decision but COVID is kind of making decisions for people x

I'm not surprised by in it, the Trust next to us has banned all visitors so at least we're allowed one.
Mum can't manage the hills from the carpark to where Dad is, I don't mind driving her and going back it's only 25 minutes down the road.
But shes going to bring her car up and park outside the building, it's a drop off zone but we've noticed cars with a blue badge are parking there. I applied for a blue badge when Dad went into the hospital and she's going to use that, even though its not for her .

Dad seems to think the steroids are going to turn in into Popeye I said they weren't anabolic but the same as what I take.
He said oh so I'll just get fat then?
🤨

💖

Steroids were great for my dad towards the end. It gave him a vastly increased quality of life for the final weeks, you should have seen his appetite. It was fantastic after he'd barely eaten for months.

He phoned mum earlier to say he had eaten a small bit of rice pudding, mum said he sounded so pleased with himself

@Candleabra

Steroids were great for my dad towards the end. It gave him a vastly increased quality of life for the final weeks, you should have seen his appetite. It was fantastic after he'd barely eaten for months.

That's good to hear He has a zimmer and has taken to walking up and down the ward twice a day. If he could regain a bit of strength it would make such a difference to him.

I just want to second that you should question any invasive procedures.

I lost my Mum last week in very similar circumstances Her lovely consultant was willing to biopsy to find the primary cancer if we wanted but agreed it would make no difference to treatment.

Also try to get a MacMillan nurse referral if you can. She was brilliant and I felt like a load had been taken off my shoulders after she became involved.

Big virtual hugs, be kind to yourself, and take one day at a time.

I'm sorry for your loss @Desperatelyseekingreason .
I asked my mum what she thought today and she agreed with me it was unnecessary. Dad had forgotten he had been told he had the mass in his rectum and was shocked when I told him.
There is a lung cancer nurse that sees dad every week day, she will stay and talk to him as long as he wants. He had been crying to her so was able to get it out of his system and be stronger when my mum was there. I also have the numbers for the 2 MacMillan nurses based in the hospital.
My brother isn't coming over at the weekend now, there's no point if he can't see Dad.

The Dr phoned me today to ask if I would go and speak to dad about 2 procedures they are going to do tomorrow, a biopsy on his lung and on the tumour in his rectum. We've decided against the lung one, it's too invasive and can cause complications but will go ahead with the other.
Its really to see if they can shrink it so it doesn't cause blockages down the line
He's started eating again! Hallelujah for steroids
Mum's behaviour has been a bit erratic, I mentioned to my brother I thought there has been a change in her over the last year and he said he noticed it when he was over the other week So that's something I need to keep an eye on too.
Dad had his EEG at another hospital today and the ambulance driver came back the long way so he could have a bit of time out of hospital .
He was dressed and sitting on top of his covers today rather than being in bed.

That sounds a sensible compromise. No reason at all to biopsy both as the overwhelming likelihood is that the lung one is a metastasis from the rectal mass.

Glad he is eating that makes a difference.
If he is up to it then maybe try to gently explore some future planning. It really does help to have had those conversations whilst they are able to express an opinion.

Don't judge your mum's behaviour too prematurely either. My dad was really forgetful and not on the ball after mum passed. Both his parents had dementia and I was so worried he would get it too but it turned out to be just stress, grief and possibly drinking too much as a way of coping. He did dry January and was a lot better after that.

Thanks Covid. You're right, I think some of mums behaviour is mostly due to the circumstances, she has isn't sleeping very well either.
The Dr said today he thinks they might be different tumours but I don't see what good it would do testing every one.
I've told Mum he's not to get out without a care plan and told her she needs to talk about what he, and her, wants as he gets worse.

I sometimes do wish (as a curmudgeonly older Dr) that more Drs had heard of Occam's razor. Whilst it is possible that he is unlucky enough to have 2 primary tumours at the same time a) it's much much less likely than metastatic bowel cancer and b) the only way that finding 2 primaries can change things is for the worse which is not something it's necessary to know.

I hope they can offer something to shrink the tumours. It's a big decision though. The hormonal treatment mum initially had was perfect and made her a lot better with minimal side effects and just a tablet. The same with the injection and radiotherapy for her bone mets. Both those really improved her quality of life as well as quantity and were certainly worth having.

Later on when things had got worse she had a final try at palliative IV chemo and looking back I think we all wished she hadn't. Her hair fell out which upset her, she was sick as a dog, no appetite and even more fatigued and then her white blood cells were killed off and she was prone to bad infections including an awful sinus infection that was incredibly painful and unpleasant for her. In the end she quit before the end of the course. In hindsight I think she regretted going for that chemo as it really only made matters worse. At the time she said she thought she should try as there were no other options and she might regret not giving it every shot. She sort of felt that if the Dr was offering it at all he must think she should have it which I'm not sure was really the case.

Really tough decisions and no easy answer but my advice would be to check carefully what the risks vs benefits are especially of the Dr seems a bit like they are keen to over investigate.

I've just read your thread OP. So sorry to read about your dad. I was just wanted to say, I work as a community nurse and we look after many patients at home at the end stages of cancer. Make sure your dad is referred to the district nurses before he's discharged.

Thank you Tiredmum I will.

I don't think he will be offered much in the way of any treatment, steroids and immunotherapy have been the only things mentioned to help the encephalitis. I'm wary of anything that will have adverse side effects when his life expectancy is so short. The Dr on the phone earlier had said its been noted that I've been questioning some of the investigations and they won't do anything that I'm not aware of. I don't think there will be any more though.

My DDs boyfriend s gran has just stopped her chemo, she did get a bit longer with it and was able to see her granddaughter get married and meet her new great granddaughter but she says its too much now, she might be living a bit longer but her quality of life has deteriorated due to the side effects.

@Cocolapew
Just wanted to say I'm thinking of you.
We tapped into a service as a family called "hospice at home" and they were brilliant but the hospital your Dad is in should have a palliative care team and so they should talk you thru everything and the colorectal nurses will provide support too.
Sending big hugs 🤗

Thank you @omgthepain, I asked mum today had there been any mention off him coming home and she said Dad told her that someone mentioned it and he'd have a nurse coming home with him I presume they've been talking about carers etc for him getting out
Hopefully I get included in his discharge discussion because, frustratingly, Mum won't ask for anything

@Cocolapew
Which hospital is it? X

setrust.hscni.net/?s=Palliative+

Hey, I'm not NI I work in Nottingham I one of the hospitals there but I've been online - click on the link and scroll down there's some useful information on there.

I'd go in tomorrow (before people don't all work weekends) and speak to the sister on the ward he's on and just explain that your Mum is very proud and doesn't like to ask for help but that you know it's required and say please can you be involved in the discussions about the care plan - going in is probably better than phoning.
He should be on (owing to diagnosis) fast track funding which means they should sort out a care plan after the discussion for him to be discharged in 48 hours.

www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Information on the link above 👆

And ask for a DS1500 form 👇

www.mariecurie.org.uk/help/support/benefits-entitlements/benefits-social-care-system/ds1500-form

Also - if you haven't done so already apply for the attendance allowance he should get the higher rate of this 👇

www.gov.uk/attendance-allowance

None of these are means tested they're based on someone's medical status

I applied for these and we got a one off payment for Mum of £350 and then the attendance allowance paid for a private carer inbetween the state funded care to support the rest of us which was a godsend.

The carers came at 7-8am, 12-1pm, 4-5pm and 7:30-8:30pm (in a one hour slot for about 20mins at a time) and then the district nurses came every day.

We got 4 nights a week funded for a night carer but used the attendance allowance to pay the other 3 nights so we could all sleep - get the DS1500 sorted first it'll speed up the attendance allowance part.

Sending love ❤️

@Cocolapew
Sorry for the huge message I just wanted to give you all the help I could x

Thank you so much, I appreciate it.
Unfortunately I can't get onto the ward without a Drs permission because of the Covid rules so I'll phone or email first.
Thank you again for taking the time to reply

I know I haven't been back to this thread but I wanted to thank everyone for their advice and support at the time.
Dad died early this morning at home.