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.

Would the care home even allow you to bring in meals? I doubt it. There'll be a ton of rules around liability and food safety that you can't meet.

I would focus on the treats and bringing him some of his favourite foods from time to time secure in the knowledge that he'll still have access to 3 square suitable meals a day.

Oesophagal cancer, indeed many cancers, plays merry hell with your taste and appetite. My DF also liked things I made and hugely moaned about what the carers made - "they can't even do porridge properly" etc etc. It was because I would do eg. scrambled egg exactly like my mum, his wife, would have made for him and he could bear it even though everything tasted awful.

So it's partly his habit and partly the cancer. What stage is he at and is he having treatment, either palliative or with an aim to curing? I wouldn't worry too much about his appetite now as - sorry to be brutal - it will change massively either during chemo, or radiotherapy, or after it - or if the tumour keeps growing, he will have tumour secretions and difficulty swallowing and all sorts.

I think you must do what you can when you can but don't drive yourself into the ground. If you give us a sense of how long he might have left, which is reasonably predictable for this cancer, we can perhaps advise on the likely trajectory.

He will be royally pissed off - he has a terminal illness; he is living somewhere he does not want to be - his unhappiness will focus on something, in this case food. No adult really wants to have to eat mushy food, even when they know it is necessary.

Have you seen what they are feeding him? Do you think it meets his needs? Presumably they understand his need for soft food. If you have concerns about what he is getting, then maybe address this with the home.

He is out of control of his life poor chap. Food is where he is trying to exercise some control. But do not let him control you. Set the limits to what you can do for him in order to both stay sane and leave yourself guilt-free when he goes.

It is such a hard balance.

Goodness, I knew this thread would be by you @Totallybannanas before I opened it.

You shouldn't be doing his laundry. That's ridiculous, when the home will do it. They're paid to do so.

Your dad knows how to make you feel guilty. You almost had a nervous breakdown before he went into the home. Please stop doing everything he says. He sounds very selfish.

I'd also stop replying to all his texts.

Did his pain meds get sorted out?

I would check with the care home first what he eats, how much and what he says to them about the food.

It's unlikely with his diagnosis that he is hungry. He may also be finding his taste buds have changed so everything tastes bland or horrid. It's also common to really want something only to smell it or taste one bite and discard it.

And most soft diet is unappealing without all those extra problems.

Given your other posts about him, I'd suspect that his demands you cook him meals are not about the food quality, but about his distress at being terminally ill, having to depend on others for care and not able to eat normal food.

A realistic position is you can buy any snack he wants but no cooking meals.

He is stage 4 and non curable. Just focusing on palliative care. My dad was in the hospice before, and moaned about the food there which was lovely as used to eat what he didn't. However, he much prefers traditional meals. I could make stew I guess, but I feel like I've been manipulated quite a bit during this journey and I know this is because he is fearful and angry. I know ideally he would love to be home, for me to give up work and care for him. I went sick for 3 mths because he convinced himself and me that he was dying alot of which was psychological but at the time I believed him. Any slight pain, he would be fearful. But I can't continue to put everything on hold, even in the home he has been demanding. The nurses, doctors and hospice all agreed he would cope at home and neither would. They have experienced his demands and his impatience. Even in the oncology ward, he thought he was the most ill person. It's his mental health that has impacted him and me.

I would juj up a supermarket soup once a week and take that on the laundry day.

tell him his food is paid for so you won’t be spending extra. You love him a lot but this is it and to answer Is no.

my uncle was asking for fresh cooked meals every day after his stroke and I had to stop doing it. As before the stroke he ate soup he’d frozen 3 days a bloody week! But now he doesn’t like left overs 🙄. No.

we love you. But no.

The nurses, doctors and hospice all agreed he would cope at home and neither would.

Do you mean that they agreed that he wouldn't cope at home?

Why aren't the nursing home dealing with his laundry? They usually do IME?

I would take him a meal occasionally, say weekly, make it a special treat. And make it a portion of something that's for the whole family as well.

Sorry for your situation.

Do all the patients' relatives do their washing?

Have you talked to the staff at the home. My mum’s home had a chef who although he wouldn’t make different meals on a whim he would cater to their medical needs. For instance my mum had dementia and started choking and had difficulty with chewing and swallowing. At first they tried to liquidise her food but she refused to eat” mush or baby food “ . We had a chat with him and he came up with stuff that looked like proper food but that she could manage. He made cheesecake but mums had no biscuit base so basically it just melted in her mouth. Stews became more like soups but called stew, mince and mash potatoes. We really appreciated his effort and she was able to eat again and enjoy it.

Do they understand he needs a soft diet and what this actually means in a practical sense? I have severe mouth issues due to lupus and I can’t eat a lot of things other people seem to think I can - I’m not in a care home thankfully though (although very disabled) so I can make my own food. I think I’d really struggle with someone else making meals etc for me. I would speak to the care home and make sure they really understand it all - but - absolutely don’t step in and do it all.

I understand the feeling of burn out. My Mum died of bowel cancer, we didn’t have the best relationship really and she went into a nursing home and it was very difficult as really she still wanted me to do everything for her and I just couldn’t (disabled myself, disabled son etc etc). In the lead up to her going in I was up and down to her house 20 mins away 4 times a day, cooking meals, going to her in the night if she got out of bed and couldn’t get back in. There’s no right and wrong to it all but you can only do whatever you feel you can do.

And I had to do all my Mums washing in the care home - all relatives did. It’s more common than people realise.

The food may be awful. It’s institutional meals. How many of us would really be happy eating that way all the time?

you aren’t personally responsible for making his meals though. You have a life and other responsibilities. You are also allowed to enjoy some free time.

what I would do is find some snacks he can keep around. Honestly, I know some people worry about nutrition, but I think if someone has gotten to the point of requiring being in a care home they should get to eat whatever they want.

If you have the bandwidth to cook for him occasionally, then I would set a schedule for visits that will include a meal. It will give him something to look forward to, even if it is only once a month.

Just visit once a week and take him a home cooked dish then. No washing!!!!

You are right the food might be rotten, I shouldn't have been dismissive, it sounds difficult for.the op to manage though.

Do they understand he needs a soft diet and what this actually means in a practical sense?

I'm sure they will. It's an extremely common requirement in nursing homes.

Yes they do understand his needs. I have spoke to the home and they will talk to him. My dad has been very difficult, and after spending time with him I can see his mental health has not been great during his lifetime. He is very impatient and has been very manipulative towards me. My mum his ex has been concerned about me as I've been talking to her and she recently confided that he had a very bad temper during their marriage and in some ways was abusive and doesn't want my health to suffer. This has totally shocked me, and upset me but seeing how he has behaving has now made me want to step back.

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

Thank you for your reply @HowToTrainYourDragonfruit . I am sorry you went through this also with your father. I would never believed how difficult this journey is. The change in dynamic and relationship has been so hard. He has signet cell which was found near his stomach junction, he also had other lymph nodes further up and behind his aorta valve. So they couldn't offer any treatment other then a stent and radiotherapy. He hasn't needed radiotherapy and doesn't seem keen. He was diagnosed, beginning of may. They won't give us a prognosis, but he had a recent scan due to stent blockage. It has now spread to his stomach and further up his oesophagus as it is now pushing against the stent. He has alot lost weight. I also think he is very addictive to the oxycodone, which seems to cause his agitation when he isn't given it on time.

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!

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.

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?

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.

They have increased the dose 10 mg twice a day and then 15 mg for break through pain. He seems very anxious about whether they will give it on time. I know pain is subjective, but he doesn't always look like he is in pain but will ask for it. But he is very impatient. I have spoke to eh home, they have offered meals from the menu, even to go to the shop but he has declined. He has asked them if I could source Wiltshire farm meals, I have used this previously and he didn't like them. He seems to involve me with every problem, I'm doing his laundry at his request as he was worried it would get lost. Now the food. This was what I was doing when he was at home. 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.

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.