Difficult DF moaning about food in nursing home

[Totallybannanas]

He is a fussy eater, he also has to follow a soft diet to oesophagus cancer. I was previously cooking meals and taking them to him whilst he lived at home. Most foods were slow cooked to cater to his needs. However, it's was very time consuming and something I can't sustain long term. I was cooking for him and getting takeaways for my family. He has now moved to a nursing home much to his dislike, but he wasn't coping at home mentally despite me visiting daily. I was cooking and cleaning, doing his medication etc. I now have to go back to work as I can't keep taking time off whilst waiting for him to die. He's already outlived my expectation. I'm already doing his laundry whilst at the home, he's expecting me to go daily and often gives me a list of things to buy. Now he wants me to bring him meals because he doesn't like the ones the home provides. The home is 25 mins away. He's making me feel guilty, messaging me he starving all the time. He had always been a fussy eater but apparently enjoys my meals. I am so fed up with being at his beck and call and made to feel guilty.

Thank you everyone, I feel like I'm constantly moaning. I haven't really been that close to my dad as my parents divorced from a very young age. So he has always been a weekend dad. He has definitely been a better grandad, I would say. So, it's only these last few months that we have been close and I don't think I have really seen the unfiltered version of him if that's makes sense. I don't have many memories from childhood. I wish my mum didn't tell me really as it's made me feel even more different. I think what I have described, are his personality traits which she recognises as she was married to him. I've never seen this side to him before.

The home should be used to cooking all sorts of special diets for people. Perhaps you could ask them for their advice?

I think your mum told you about him to protect you, it is up to you how you react though,if you want to care for him in the time be has left thats OK, but I do think you need to set boundaries for yourself.

Try not taking all his washing home, just some certain shirts. Write his name or order one of those stickers used for labelling school uniform. Don't tell him
Tell him you can't see him everyday if you don't want to.
Decide on 1 day a week or similar that you can bring him a home cooked meal in
Otherwise he will be fine with the homes meals. You could probably ask to chat to the chef or manager at the home about it and discuss a way forward
Jelly pots or trifle etc as snacks for the home to offer him and keep in their fridge for him?
Your mum has probs told you about it so you can put boundaries up and protect yourself rather than burning out and feeling guilty taking it all on and still getting manipulation attempts.

If slow cooked foods worked well for him could you fill the slow cooker to its max capacity and create 10 servings of a recipe, take 1 to him and put the other 9 in the freezer. Each week, you cook one fresh dish and freeze the rest in individual portions and take 6 frozen ones for the other days. It would involve a couple of weeks of cooking 2 or 3 times to stock pile but should make it easier from then on.

You could also stock a mini fridge as others have suggested with milky puddings, custards, yoghurts or anything else he likes and can tolerate.

As others have said he is dying so this won’t continue forever and you may reproach yourself later if you stop completely.

I can try and do some meals. The home have offered things, even going to the shop and he has declined. He expects me to visit daily on top, but all he talks about is how is unwell, how bad the food is. I can't seem to distract him and if I say anything positive it gets shut down. Part of me just me just wants it to end which sounds awful 😞

Please stop.

Please stop just blindly obeying him.

It isn't benefiting you in any way.

Your mother is doing her best to protect you from your father's manipulation. Listen to her.

the home my father was in was marvellous with food. they had a choice of meals, but if the food did not suit, they would try to accommodate him as far as possible. there were always things like sandwiches, cakes, etc, if they were still hungry, and special diets seemed well catered for. I would suggest you contact the management and explain the problems you are having with your father and how you cannot continue bringing him food daily.

@Totallybannanas this goes much deeper than trying to figure out what food your father can eat.

It's all to do with how difficult he can make your life. Nothing more, nothing less.

That’s understandable and you shouldn’t feel guilty about feeling that way but you also need to protect yourself from how you will feel when he dies.

I lost a very close relative to cancer and honestly the last few months were just horrible and her personality changed beyond all recognition. I remember so clearly her telling me though that the illness had made her somebody she didn’t want to be and brought out all the worst parts of her but she felt powerless to behave differently as she was so overwhelmed by what she was facing.

it really sounds like he doesn’t have long, so don’t distance yourself from him to such an extent that you will feel regret that you did so when he passes would be my advice. But this is awful for you and him and I do feel for you.

Perhaps it is just my family, but I have had more than one relative with weeks or months to live, continue for years. My grandmother has been dying for 15 years now. I’m not joking when I say I think my father will die before she does.

unless the doctors tell you it’s down to final days or hours, you can’t put your life on hold.

Tell him you are exhausted and something needs to give. Say you can bring him meals on weekends but will need to visit less in the week so you have time to fit everything in. If he kicks up a fuss just don't do food.

Thank you everyone for your kind responses. It's such a difficult balance. I can see he is fearful, and angry about his position. But I can't change that. I know he wants to go home and he can if he wants. But I can't put my life in hold and can't be there 24/7. It's been 3 mths and he's hasn't coped since he was diagnosed. I had hoped he would have managed but mentally he wasn't. This is why he ended up in the hospice and then nursing home.

I think you should try to pin down the oncology team about what they see the next month or two looking like. They will honestly, themselves, know how long he has got- they just won't want to tell you in case they are wrong or in case it upsets you and they know it isn't right to be too certain and nothing is 100%. But honestly hospice and nursing home staff see the process of moving towards dying, then active dying, all the time. Hospice bed planning means they are pretty sure where folks are on the journey. They will know what his weight loss means and how to interpret his mood, his energy level, his colour, his appetite.

I would also ask them about oxycodone and when they imagine doctors can add in things like oramorph. If he is scared they will not give a dose on time, he should be palliated more, I reckon - and have doses calmly and constantly so he is not worried, as well as anything else like anti nausea.

Does he have a cough or bringing up sputum from the tumour? That can be very unpleasant too and affect appetite so they can give something to dry up secretions but perhaps not until a bit later in the process.

I am sorry if I am being too blunt and clinical. I found it very helpful to have a sense of where we were with it all (he was the third person I had watched die so I knew the broad steps anyway).

There is a terrible time when it feels so difficult and demanding and you think how the hell can I do this, how can I manage, this isn't sustainable. But in all my experience that time is usually between five and twelve weeks from the end. And each few weeks, from now, there is an evolution and your role is different. The next 6 weeks might be about food and trying to get energy into him. Then two weeks following that might be about painkillers and making him comfortable and food suddenly doesnt matter. Then you have eight days right at the end where its a bedside vigil basically. (obviously everyone is different and e.g. a perforated stomach can mean you go suddenly within 12 hours- and cancer spreading can be sudden and rapid too- so it may not be as I am outlining- sorry if its too certain sounding).

So I guess I'm saying try and get a sense of how they see the next period of time going along. I'm so sorry if this is all a bit grim - I am trying to give certainty and gift you some small ability to plan, without trying to say I know how it will go exactly.

My DF had a period which felt like your current one. In this "steady state"- he was eating enough to keep going, yet complaining and panicking, didnt like the food, could still get up a bit and walk around but increasingly frail and fragile. I was speaking to him on the phone about every 2 days and going to see him for a day each weekend. In between times I had some admin calls to do for him - prescriptions and stuff, a hospital bed, buying tempting little things like protein mousse and saying hey try this milkshake etc - but I was NOT there for every meal. If that helps you as an example of someone else's experience, to help you balance what you think you should do and what you can do.
Good luck and take care xx

I think you should try to pin down the oncology team about what they see the next month or two looking like. They will honestly, themselves, know how long he has got- they just won't want to tell you in case they are wrong or in case it upsets you and they know it isn't right to be too certain and nothing is 100%. But honestly hospice and nursing home staff see the process of moving towards dying, then active dying, all the time. Hospice bed planning means they are pretty sure where folks are on the journey. They will know what his weight loss means and how to interpret his mood, his energy level, his colour, his appetite.

I would also ask them about oxycodone and when they imagine doctors can add in things like oramorph. If he is scared they will not give a dose on time, he should be palliated more, I reckon - and have doses calmly and constantly so he is not worried, as well as anything else like anti nausea.

Does he have a cough or bringing up sputum from the tumour? That can be very unpleasant too and affect appetite so they can give something to dry up secretions but perhaps not until a bit later in the process.

I am sorry if I am being too blunt and clinical. I found it very helpful to have a sense of where we were with it all (he was the third person I had watched die so I knew the broad steps anyway).

There is a terrible time when it feels so difficult and demanding and you think how the hell can I do this, how can I manage, this isn't sustainable. But in all my experience that time is usually between five and twelve weeks from the end. And each few weeks, from now, there is an evolution and your role is different. The next 6 weeks might be about food and trying to get energy into him. Then two weeks following that might be about painkillers and making him comfortable and food suddenly doesnt matter. Then you have eight days right at the end where its a bedside vigil basically. (obviously everyone is different and e.g. a perforated stomach can mean you go suddenly within 12 hours- and cancer spreading can be sudden and rapid too- so it may not be as I am outlining- sorry if its too certain sounding).

So I guess I'm saying try and get a sense of how they see the next period of time going along. I'm so sorry if this is all a bit grim - I am trying to give certainty and gift you some small ability to plan, without trying to say I know how it will go exactly.

My DF had a period which felt like your current one. In this "steady state"- he was eating enough to keep going, yet complaining and panicking, didnt like the food, could still get up a bit and walk around but increasingly frail and fragile. I was speaking to him on the phone about every 2 days and going to see him for a day each weekend. In between times I had some admin calls to do for him - prescriptions and stuff, a hospital bed, buying tempting little things like protein mousse and saying hey try this milkshake etc - but I was NOT there for every meal. If that helps you as an example of someone else's experience, to help you balance what you think you should do and what you can do.
Good luck and take care xx

No it won’t be forever but it could be years and I’m speaking from experience.

Stage 4 oesophageal cancer in someone who has already lost a large amount of weight - realistically it isn't going to be years.