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Elderly parents

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 Sad
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.

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suggestionsplease1 · 22/06/2021 22:53

There can be some very good at-home support, probably dependent on where you are. A relative got a hospital bed put in a downstairs room, carers on call, and well managed pain medication that was adjusted regularly. This might not be where you are at yet anyway but hopefully the OT or MacMillan can give more advice. Your dad may be tempted to underplay things but that can put a lot of pressure on family and sometimes things can progress quickly so try to think realistically about what might be helpful for everyone, in order to increase comfort at home.

finallymightbehappening · 26/06/2021 14:57

How is he op?

threeteenstaximum · 26/06/2021 18:17

OP, has social worker assessed dad? I'm so sorry to hear he is so poorly. Even if he doesn't want to accept carers coming in, social worker can refer to various telecare options that include falls detector and useful equipment and liaison with primary care. A social work needs assessment, great of some pre discharge (but COVID arrangements are different currently) is great but you can also refer to community team once he is home. The local authority will do a bit of signposting if that is all dad needs and refer him if he needs more.

threeteenstaximum · 26/06/2021 18:20

Just to mention, please talk to dads GP or the hospital doctors if he is still in, about whether he is fast track chc? "Rapidly deteriorating end of life diagnosis" & keep asking . When someone can't eat much and has metastasised cancer , he should be triggering consideration of this.

IthinkIsawahairbrushbackthere · 27/06/2021 00:05

I'm so sorry to read about your dad. It could have been me writing about mine eight years ago. You and your family are in my thoughts.

Cocolapew · 28/06/2021 17:15

Thank you everyone.
Dad is much the same. He's able to get up and go to the toilet and shower. He hasn't deteriorated in any way since leaving the hospital. He's eating a very small amount.
He is still obsessed with the pain in his ankle/leg.
He is getting a bronchoscopy on Wednesday, I was very surprised. I presumed because he has cancer in so many parts of his body there would be nothing done.
He's a bit confused now and again but is aware that he's confused most of the time.
He definitely isn't at end of life care but I'm aware this could happen very suddenly.
Once Wednesday is over I'm going to phone his GP to see if they will give him something stronger for his leg pain. I thought they might have been in touch after receiving the hospital discharge letter 🤷🏻

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Cocolapew · 30/06/2021 23:12

Dad had his bronchoscopy today but the Dr says it wasn't very successful, it was just a wash not pinching any tissue off so she expects us to be called back for that. She said she thinks the tumour is behind his windpipe because she couldn't see it but his airway is narrowed. We've heard nothing from any Dr since he was discharged but the Dr today said that it's his Dr's she will be meeting with and we will be hearing sometime next week from them.
Dad still isnt eating and is getting very weak he still only has pain in his leg. He's also getting confused with information but his longterm memory is ok.
So we still have a wait to see if there are any treatment options going to be offered.
My brother is coming back over next week for a few days so that takes the pressure off me a bit.

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joystir59 · 01/07/2021 17:33

I hope he gets a prognosis soon, and if he is not going to be actively treated you will be able to access local palliative care services via the local hospice, including potential for hospice at home care if he /family wish for this. Wishing you all energy, love, support, answers, and that he gets the pain relief and care he deserves

Cocolapew · 04/07/2021 08:40

Thank you joystir.
Dad is getting more and more frail by the day, I saw him on Friday and he was talking to DD who said he was talking to someone that wasn't there but then was ok again.
Went round yesterday and mum said he had deteriorated again, he was very confused and hallucinating. Everytine i went yesterday he was fast asleep so I couldn't see him, I wanted to phone an ambulance once I had saw him.
Mum seems very loath to ring one for some reson.
I told her he could have an infection and to watch for signs of sepsis.
I'm going around shortly to see if i can catch him awake.
My stress levels are through the bloody roof.
I know he hated being in hospital but he can't be at home if he's so poorly without some outside input, the hospital appointment on Wednesday was the only time I've spoken to a Dr since he was discharged.

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paradyning · 04/07/2021 15:40

Have you a Macmillan nurse in place yet? Call 111 if not

Cocolapew · 04/07/2021 16:54

No not yet, I'm phoning the Gp tomorrow for a home visit and to get the ball rolling. We don't have 111 in NI.
I was round twice today and, to me, he's much the same as he was during the week.
Mum stopped his codeine and he's stopped hallucinating. He was talking to his friend on the phone when I went round this afternoon
He was chatting to me but was slightly confused, he though that me and DH has moved in and was disappointed when he realised it was only him and mum 😄

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Cocolapew · 06/07/2021 08:32

The GP came out yesterday and wanted bloods done on my dad. She gave him the option of her doing them or to go to A&E which was her preference because it would be quicker, but she was wonderful and made it seem like it was dads decision.
She was concerned about how dehydrated he was. She had put on the letter for a social assessment too so I'll keep on top of that.
I took him up and he got readmitted. When I left he was waiting for a bed along with 40 others!
Luckily he had been examined in a side room and he was able to use the examinating bed in there.
A nurse got him a sheet and pillow and he was hooked up to his drip when I left.
Surprisingly his blood pressure and oxygen levels were fine. My Dad has kept fit all his life and I'm wondering if this is standing him in good steed now.

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Sunnyday321 · 06/07/2021 13:10

I'm glad he is getting / and accepting the help he needs . With luck they will encourage him to eat a little more.

Cocolapew · 06/07/2021 13:14

Thank you Sunnyday.
He's still in A&E Hmm but has been for a ct scan and is getting an ultrasound this afternoon then they'll decide what to do.

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Sunnyday321 · 06/07/2021 13:33

Get yourself some rest whilst he's in there. Take careFlowers

Cocolapew · 06/07/2021 22:10

29 hours and still no bed ...

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TheSpottedZebra · 06/07/2021 22:28

Oh Coco hello.
I'm so sorry to read about your dad - what awful news. It's criminal that he's been waiting so long for a bed.

And you've been ill yourself too? Do please take lots of care. Sending you best wishes and your SaulSnack of choice x

Cocolapew · 06/07/2021 22:44

Thanks Zebra, my Saul the evil Snacks of choice atm is Rescue Remedy and Kalms Hmm.
I've had pleurisy and a pulmonary embolism but I'm ok now.

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TheSpottedZebra · 07/07/2021 09:08

Sending you a bucket of Reacue Remedy

Pleurisy and pulmonary embolism? Blimey, you have had it tough. I'm feeling for you so much that I won't even insist that Saul is the sheer embodiment of all that is good and true.

Hope your dad has a bed now?

TheSpottedZebra · 07/07/2021 09:09

(Apols to anyone else for the Homeland diversion...)

Cocolapew · 07/07/2021 09:34

The Homeland diversion was much appreciated Grin
Yes he got took to a ward in the early hours, so we'll go up today. He's in the new part of the hospital so will have his own room and bathroom, which is a bonus.
Smile

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TheSpottedZebra · 07/07/2021 09:35

Ah thats good to hear Smile

CovoidOfAllHumanity · 07/07/2021 09:36

My mum died of metastatic cancer recently

It sounds as though he needs someone to take responsibility for his overall care ie an oncologist. They seem like they are still trying to find the primary and get tissue for diagnosis but that is very invasive and not clear if it's going to be worthwhile. They did this with mum for a while too. She had an open biopsy in the end just to tell us it was the breast cancer she'd had years before which we had all guessed anyway. It did not seem to make much difference as she was too ill for chemotherapy by then anyway.

The leg pain might respond very well to local radiotherapy if it's mets. Mum had that to some painful spots and it was always great. She also had a expensive antibody injection for the he bone mets and That really helped her pain too. Both those were better than morphine which she hated taking due to constipation and confusion it caused her.

When she stopped eating low dose steroids helped but again did affect her mentally. She survived mainly on Fortisips for a long time.

Getting hooked in with the hospice was the best thing we ever did. She went to day hospital there for a long time and it helped her practically and coming to terms with it all and helped us as well. Hospices are usually charities so not quite NHS and often you can refer yourself. I would honestly ring them even now and find out what they can offer. Mum died in the hospice she knew and it was the best death she could have had even with Covid restrictions. They let us all be there in the end which the general hospital never would have.

Macmillan were good too at the end. The Macmillan nurse gave a lot of the other services eg GP a kick up the arse to get stuff done for mum like carers and a commode at home when she needed those things and helped get her into the hospice at the end.

She had a DNAR and a living will to say she did not want resuscitation which I also think is very important to get done and we spoke a lot about her wishes at the end and for her funeral which meant I could be sure what she wanted. She moved money around so that dad would be able to access it after she was gone, divided up her jewellery, wrote to all her friends warning them. It's horrible to think of this stuff but she was so brave and her doing those things made our family's life much easier after she'd gone which was exactly what she wanted. She said there weren't many things good about having terminal cancer but having notice was one she would make the most of. That and the blue badge.

Cocolapew · 07/07/2021 15:30

Thank you for your post, sorry about your mum.
We saw him today and he was much more like himself. He's been for an xray on his foot and back, hes getting an untrasound one down his throat, an mri and a dementia assessment.
The lung cancer nurse came to speak to him/us as well.
Hopefully once they get all the results they will tell us the next step. It's the not knowing whether he'll have treatment or not knowing how long he's got that is very stressful.

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Cocolapew · 07/07/2021 15:30

His blue badge arrived this morning!

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