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Elderly parents

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Original poster

Dad has stopped eating.

135 replies

Cocolapew · 15/06/2021 15:13

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.

OP posts:

Desperatelyseekingreason · 18/07/2021 22:55

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.

Original poster

Cocolapew · 18/07/2021 22:11

@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.

OP posts:

Original poster

Cocolapew · 18/07/2021 22:08

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

OP posts:

Candleabra · 18/07/2021 21:37

Mummapenguin20 · 18/07/2021 17:57

💖

Original poster

Cocolapew · 18/07/2021 16:15

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?
🤨

OP posts:

Original poster

Cocolapew · 18/07/2021 16:13

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 .

OP posts:

omgthepain · 18/07/2021 15:57

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

Original poster

Cocolapew · 18/07/2021 14:32

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

OP posts:

CovoidOfAllHumanity · 18/07/2021 13:45

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!

Original poster

Cocolapew · 18/07/2021 09:52

Going to the hospice is my preference but I think my mum is struggling with the concept because my Dad seems so well still, she won't let him home without a care package though. He hasn't deteriorated over the last couple of weeks at all and I think she's happy thinking that's how it's going to be.
She said to me yesterday she thought Dad thinks he's going to get better, but I interpreted what he said as tongue in cheek.
She also said yesterday why do the Drs always speak to you when they come in but that's only because I ask questions.
He's on a Care Of The Elderly ward, the Dr I spoke to last week was a respiratory consultant, my husband has COPD and he's his Dr, yesterday I'm sure she was a gastroenterologist.
The Dr yesterday said she's starting dad on steroids to see if it helps reduce the mass in his rectum and maybe give him a bit of an appetite back.
I think my brother is going to try to fly over for a long weekend this week so, hopefully, I'll have a bit of back up 🤞

OP posts:

CovoidOfAllHumanity · 18/07/2021 09:37

I would possibly caution against the dying at home option. My mum died in a hospice which was her wish and it was the best death she could have had. Very peaceful with all her family with her.

The days before she managed to get a place when she was dying at home were really hard to cope with and I would not wish it on anyone. We had carers in the daytime and a Macmillan nurse but we were on our own a lot of the time especially nights. She was bedbound and couldn't do anything for herself and she would get frightened and be in pain and breathless and we did not know how to help. It seemed a big responsibility to decide to give her extra morphine although we were 'allowed'. We took it in turns to sit with her at night which was exhausting and emotionally draining.

We were all very relieved when the bed came up at the hospice. She was just as happy as the rest of us. She felt much safer there and we could just spend time with her instead of worrying about care stuff. She was only there a few days before she died. She was very confused and distressed the last day and I know we would not have coped

It may be that others have different experiences of course. My nana died at home out of the blue in her sleep which obviously was very peaceful but dying of cancer I am not sure it is so easy.

CovoidOfAllHumanity · 18/07/2021 09:23

I think you are right to question invasive tests. Drs have a tendency to keep on doing everything that can be done

Does he have oncology/ palliative care involved? I'm guessing he is on a general medical ward and that is the consultant's specialism. Do push to get specialists involved as they will often have a better idea of what is useful and not useful.

I guess it can be right to get a 'tissue diagnosis' of what the primary cancer is even after it has spread as it can guide palliative treatments. My mums Drs insisted on an open lung biopsy of her mass which at the time I thought was crazy. It turned out that it was a breast cancer metastasis which meant she could have hormone treatment which successfully kept the cancer from spreading further for quite a long time even though it was already in her lungs, bones and liver and she would not have been offered surgery or chemotherapy. Although there was never any chance of a cure the hormone treatment made her a lot better. She regained weight and wasn't in pain. I still think they could have taken a best guess it was breast cancer without needing that biopsy but it was to her benefit to know.
Admittedly I don't think there are hormone treatments for many cancers eg bowel or lung but possibly if it was prostate cancer the same could apply.

gogohm · 18/07/2021 09:04

Hugs thinking of you all, it's tough

Original poster

Cocolapew · 18/07/2021 08:32

Thanks @omgthepain. No we haven't had the conversation yet, he wants to be at home from what he's saying. I'm going to ask my mum today what she's thinking, about more tests and what she wants in regards to him leaving hospital.
I take her to the hospital every afternoon and drop her off before I go and park, so they get 10 minutes or so on their own, but I don't think they are discussing anything of importance.
I also go every day to keep up with whats happening, my Dad never remembers and Mum doesn't go and ask. I don't have any problems with discussing his care with drs or nurses, and tbf his care has been great. I just think maybe now it's time to stop investigating.
I'm so sorry you are on this journey too @IHateCoronavirus, the added strain of dementia is very hard.

OP posts:

IHateCoronavirus · 18/07/2021 01:12

I’m so sorry you are going through this as a family. I suspect we will be joining you. My dad is also not eating and his mobility has recently took a massive decline. He also has dementia.

DM is in serious denial she seeks help for single symptoms at a time so the big picture is missed. I’ve called the doctor and they are sending someone out next week to take bloods at the house.

You sound like an amazing daughter. I hope the time you have left brings you all peace and some lovely memories

omgthepain · 18/07/2021 00:39

@Cocolapew
I'm so very sorry to read this. It is hard when patients are so poorly but if you aren't happy with any further investigations please tell the ward. We get this a lot (I do cancer tracking for the NHS)
They often use the phrase best conservative management but they have a duty of care to investigate all avenues but if you think further investigations aren't appropriate please tell someone. If you feel uncomfortable telling the nurses PALS can help you.

In practical terms, have you had a conversation with your dad about where he wants to be? like staying in hospital, moving to a hospice or having "hospice at home"? It's a good idea to do this while he's still well enough to make the decisions.

They will expedite any care plan on a fast track funding owing to how poorly he is and hopefully get things sorted in 48, their target time sometimes it takes a little longer over weekends etc....

My heart goes out to you I've dealt with this professionally and personally and it's so upsetting

Sending big virtual hugs 🤗

Original poster

Cocolapew · 17/07/2021 23:59

Thank you Houseofvelour, tbh me and Dad weren't particularly close, he worked away most of the years I lived at home. This is the most time I've spent with him. He'll be sick of the sight of me!
I hoping he goes to sleep one night and doesn't wake up, I'm dreading a major deterioration.
I've read back over the thread and I'm sorry that this type of cancer seems to be such a common occurrence, everyone has been so kind sharing your stories.

OP posts:

Houseofvelour · 17/07/2021 23:37

I've just rtft and want to say that I admire your strength and it is so obvious that you have so much love for your dad.
Please remember to take some time to care for yourself as well as your dad.

I hope that he stays out of pain and you have plenty of time with him yet xx

Original poster

Cocolapew · 17/07/2021 23:18

Thanks Zebra and longtompot.
Dad is still in hospital and disappeared off yesterday for another mri. The Dr was doing rounds when we were there this afternoon and I asked why did he get another mri. She said they wanted to check his spine which was clear but he had a spot, as she said, on his lower back and a large mass in his rectum. They now think the mass is the primary source.
She said they were going to put the camera up and get a biopsy.
Tbh I have no idea why they are doing so many tests still. He isn't getting treatment, he's far too far gone
She seemed a bit taken aback by me asking and said it was to find out where it started and and it might help us understand it all better. Also it might help in his palliative care.
She did say if he didn't want it they would leave it.
IMO it's a unnecessary invasive procedure, but its up to my Dad to decide.
He now has cancer in his lungs, kidneys, liver, bones, lymph nodes, back and rectum and still has absolutely no pain, his stats are perfect. He still isn't eating anything solid and is quiet weak but apart from that you'd never guess there was aanythingwrong with him.

OP posts:

SugarHouse1 · 14/07/2021 18:32

This reply has been deleted

Message withdrawn at poster's request.

longtompot · 14/07/2021 18:28

So sorry to hear the news, but I guess now at least you all know and start to deal with it. Don't forget we are all here for you should you wish to let off steam

Original poster

Cocolapew · 14/07/2021 15:59

Not yet, he's going to be in hospital for a while waiting for tests on his brain, and the lung cancer nurse sees him every day so we can organise it through her when the time comes.
I did mention to my mum she'll need to talk it over with dad, but she'll have to get her head out the sand first!
At least its been confirmed now that there's no treatment going to be offered.

OP posts:

TheSpottedZebra · 14/07/2021 14:21

Oh Blimey, that's tough news for you. I'm very sorry.

Did you manage to talk to the hospice or Macmillan?

Original poster

Cocolapew · 14/07/2021 13:52

Dad is still in hospital due to the encephalitis, they are working on trying to reduce it. It appears to be caused by a certain type of lung cancer.
Spoke to a Dr and he has 3- 6 months left and will stay in hospital for another couple of weeks while they get all the tests done on his brain.

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