Difficult DF moaning about food in nursing home

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

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

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

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.

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.

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.

@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.

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.

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.

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.

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.

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.

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

He will them comment, I thought me being in a nursing home would be less then a burden for you but it hasn't worked out that way! No it hasn't because of the way he has been.

I do think it's because of your response to him, though.

You must start putting yourself first, and just refuse to do all these things.

Think about the Wiltshire Farm Foods one - he tried them before and didn't like them. Now, just to cause you bother, he wants you to get them again.

It's all manipulation. Please, for your own sake, just do what is reasonable. Stop answering all his texts. Don't pander to him. Stop doing his washing. It's just him controlling you @Totallybannanas

Step back. Stop. Look after yourself and pay him no heed. He isn't even grateful anyway.

It won't matter what you do, it won't be enough. He'll think of another way to make your life a misery. It'll never, ever be enough.

Start looking at his messages every two or three days. Don't look at them otherwise.

Stop doing his washing. Don't do any cooking. This is all about his need to exert control.

I'm sorry you've discovered that he was abusive to your mum. That must change how you're feeling.

And looking back at how manipulative he's always been towards you, doesn't it just seem like more of the same now?

An unpleasant person with cancer is still unpleasant. I realise that this is very difficult for you.

oxycodone can also create agitation both when you have it and when you don't. Have the palliative team talked about upping the medication at all? Is he on a driver?

Poor you and poor him. I honestly dont think it will be very long. By thr time it is in stomach is very quick and can be quite dramatic. Our oncologist gave my dad 4 months if he didnt do the next batch of chemo and it was spot on.

I see a lot of nursing home meals (I'm a SALT and do a lot of mealtime assessments) - they're not great, but they're not generally terrible either - and staff generally are really good at offering alternatives to picky eaters - I've had clients who tend to get by on a lot of custard or yoghurt type foods and if you've got to old age and you just want to eat your pudding - fuck it and go for it.

You could talk to the staff and provide puddings and treats of the texture diet he's on - so mousses etc, or melt in the mouth type crisps if he's on a diet allowing those; or, pricey but an option, the Wiltshire Farm Foods type meals offered for each IDDSI level diet actually smell and visually look quite nice when I've seen them. Also don't disregard fancy condiments and sauces to whack up the flavour of things - although some of the amount of sweet chilli sauce I've seen clients using doesn't half clear my sinuses.

But no, cooking and washing for him is bonkers - if he's a bit of an innate cheapskate you could try saying that he needs to get his money's worth out of paying to be there - that works with some people!

How long has he been at stage 4 @Totallybannanas ? Has he had any treatment and now stopped, or is he still in active treatment? Where has it metastatised to? How long has he been at this stage and how fast is the primary tumour growing? Sorry to be grisly but I can give a quite accurate prediction (maybe) of how long he has left - I became an absolute expert in the stats for this last year as we went through it.

I think our situations are similar in two ways as my DF had the same thing and was also vile to all of us. I think if you're a boomer man who has never had good emotional regulation, then the huge emotional and physical changes that dying of cancer brings are absolutely impossible to manage. They just don't or can't have any space for others.

My DF also at the end of his life really showed the neurodivergence he had been masking always and I realised all his quirkiness (cough rude abusive behaviour cough) would be seen very differently if he were a young boy today and he might have had help. As it was, the sensory and emotional challenges of cancer threw him into absolute confusion and unmitigated rage.

Having said that - perhaps an explanation but not an excuse. Anything like this should not be taken out on you and it is unfair.

You must protect yourself. I'm so sorry that you are here. But this is an opportunity as well as a horrible thing. This is actuallythe start of your grieving as you move from being a protected child to a full adult. He isn't going to understand what you are going through or be able to rein back on his demands and he can no longer think of you and take care of you. That is very sad, you are not sheltered and cared for by him any more. That's one thing about losing a parent and becoming someone who takes care of yourself. I am glad you still have your mum to help you calibrate this.

It makes it even more difficult if perhaps he never was all that caring - that means you have to dig even deeper to find your self worth and the care you need to give yourself, as maybe he didn't offer you the best template for how to do it.

He will not like the process of dying and he may go to pieces. You can't save him but you can care best for him by being a calm presence when you can and caring for yourself first. x