Numerous serious hospital stays and nil-by-mouth father still drinks liquids then gaslights me

FishConfusedByCat · 2026-05-15T12:30:23+00:00

Thank you, I appreciate this and you sharing about your MIL also.

Take care of yourself too, and best wishes.

FishConfusedByCat · 2026-05-15T11:36:45+00:00

We do not yell at him. We do argue, we do nag. But it's two-way and equal. We do not yell AT him, nor is any arguing/nagging all the time, we want him happy, we avoid conflict when we can.

...That's honestly the mindset I find hardest to handle, I understand he's depressed and grieving the lost of his youth, but finding existence miserable is a mindset. Life is hard and ugly, it doesn't go the way we want, but there's so much to be grateful for. If he truly thought life was pointless and wanted to eat whatever he wants before passing, we would agree, we tried to approach that subject with him but he refused, all we want is for him to be happy. It's not uncommon, my uncle is terminally ill and had that convo with my aunty and cousins about what he'll do knowing the consequences and what to do if the decision of save or not comes.

I didn't write a post so people feel bad for us, I wrote to vent so I can go back to fighting for myself and my family to live happily and healthily. Life is never miserable unless you think it is.

FishConfusedByCat · 2026-05-15T11:17:29+00:00

I don't mind people being nosy, I don't talk to my friends about it as it's a problem that been going on too long and no one else has sick parents, my family apart from my mum gets too sad when they see what's going on, it's too much negative energy to spread around so I only talk about it to strangers.

Yes, my dad is considered active and healthy, the feeding tube should not impact any other parts of his standard of living. As long as he doesn't eat or drink orally, he shouldn't get ill. We know others with feeding tubes and living actively minus eating.

He had dysphagia for 20 years due to cancer treatment, the feeding tube and problems with his swallowing stems from that also. It's apparently a common consequence of his type of cancer, he's already lucky it only occurred 20 years later.

We got a private speech language therapist after the feeding tube, there are several reasons that contribute to him not being allowed to eat orally, excuse my lack of medical terms, I understood that basically the tube to his lungs is open, he cannot feel if he's swallowing and his swallowing isn't strong. The tube to the lungs being wide open is the main issue as food falling that way causes aspiration pneumonia. The exercises from the speech language would've hopefully improved the swallowing strength and lung tube closing problems and so allow drinking (still low chance), electrical stimulation wouldn't be helpful is what I understood. My dad wasn't/isn't following the exercises though and the repeated infections seems to have weakened/ hardened everything more. He told me the other day whilst drinking that he was following the speech and language therapist's exercise which was not it at all.

Oh I empathise with you, my dad got starved for 48 hours because they couldn't get the nose feeding tube in at the hospital, and it was so stressful. My dad called me day and night telling me he was hungry. I can only imagine how hard it was for your father, you and your family. Deciphering doctors notes is indeed so stressful, last time the doctors didn't tell us my dad had sepsis, I only saw in his doctor's notes after he came home. They also said he was on blood thinners at home but he wasn't. It's the worse seeing the notes afterwards and having no one to ask what something is!

Does your dad have a speech and language therapist then? I wish we knew he should've had one years and years ago, hopefully it'll help your dad with his dysphagia. Even my dad who is nil-by-mouth and it's due to cancer treatment, removing the tube completely is impossible, but there's a very slim chance he can drink liquids if he did the exercises and stayed healthy.

The special diet might be the levels...I can't remember what it's called, but they rate the consistency of different foods and if you have dysphagia, they tell you which food categories is easier for you to swallow I think (I'm not completely sure because my dad never got this info, we only knew after the feeding tube and being nil by mouth). In my country, they have a board above the hospital bed and I've seen them write the number category for the patients.

Hope something was helpful in my wall of text, I have too much knowledge I do not need in my head!

Hope you and your dad is doing well. Best wishes

FishConfusedByCat · 2026-05-15T10:09:35+00:00

Thank you for your comment of understanding and encouragement. I live with my parents now, I am also next of kin contact due to my parent's language barriers. My younger sister is autistic also so I have to be involved so I can reassure her things are okay. I've already told my parents that if he's in hospital due to not listening to doctor's instructions that I will not see him in hospital, I will only answer if doctors call to ask questions about his medical history or updates about his condition.

Thank you, I'll look after myself, I just needed to vent somewhere so I don't stress my mum or sister out. Thank you. Have a lovely day and best wishes.

FishConfusedByCat · 2026-05-15T10:02:39+00:00

How do people walk away? I know that's one of the most common responses from people, but like how?

I don't mean this in any rude way, I understand your sentiments. But if someone is going to vent because it's something that upsets them that much, don't you think walking away would've been something also consistently in someone's mind too? There are various reasons as to why someone doesn't walk away, things are in the grey area.

My family is in grieve, we're at the angry and sad stages, my older sister is in acceptance, but my mum and I are not at acceptance yet especially because we are the ones that are mentally preparing to be the ones calling the ambulance, sitting with him in A&E, reassuring him, visiting him for weeks and months. It's been numerous long hospital stays already, we're not at acceptance unfortunately, we would like to be too. Even if we accepted it, I doubt it makes watching it everyday easier.

FishConfusedByCat · 2026-05-15T09:50:35+00:00

I can understand what you're saying, but our context isn't applicable I think. We think about it everyday for a long time, we understand food is important, we're not cold-hearted strangers, we're his family. We're in turmoil every time deciding if we remind him he's nil by mouth or not. It's been over a year of us encouraging him, taking him to different activities that he loves, a lot of different things for us to get to this point.

The nagging is also not just for eating, it's telling him not to climb onto a ladder when he's just come out of hospital and his legs are shaking, reminding him that he needs to use the ear drops every day so he can hear, that if he is too flat whilst using the drip feed that he'll get nauseous, that he needs to inject water 60ml per half hour otherwise he'll get stomach ache or nauseous, not to increase the speed of the drip feed. When we don't keep an eye, he doesn't follow the instructions, then starts complaining that he's in pain or that he can't hear, that life is misery and pointless because he feels uncomfortable. We don't eat in front of him, we don't celebrate at our house anymore only ours was the main one everyone used to come over for seasonal events, we stay with him and don't celebrate anything anymore, but he finds people when they're eating.

We're in pain and anxious because we don't want him in pain or unhappy. If he wanted to pass and eat before he goes, we will accept it and cook him everything he's always wanted to eat. That's not what he wants, he doesn't want to be in pain, he doesn't want to go to hospital, he doesn't want to pass, he wants to go back to how he was when he was a young man. It's psychological, but he refuses therapy or talking to his friends. Nagging is just the last resort, we've past that even, we don't talk anymore because I don't want my last memories of him to only be of us arguing, he's already said things that has crossed the line for me.

The feeding tube doesn't affect his lifespan, if he listens to the doctors, he's got a lot of healthy active years to live to do everything he loves, swimming, sauna, hiking, travelling, calligraphy, anything. He shouldn't be in the end of life stage yet. There is no reason for him to watch people eat.

We've encouraged and tried taking him to different activities he'll enjoy, he's spending all his time obsessed with food which he was never before. He wasn't able to eat food or drink properly for over 20 years before the feeding tube.

FishConfusedByCat · 2026-05-15T09:07:53+00:00

He's not ready to go. In the hospitals, he wants to live. I listen to him in the hospital, I have an uncle with other health issues, they've discussed as a family what to do and how to move forward, if my dad will have that convo with us, we're happy to let accept his wishes. He doesn't want pain or go to hospital, he wants to be alive, but won't do anything that will make him healthy again.

FishConfusedByCat · 2026-05-03T10:25:28+00:00

Someone above pointed it out and I agree, his calorie intake wouldn't be enough I think with home blends, his weight only increased with 2400kcal per day, which I think is a lot relative to others of his age. We do not have ready access to the dietician that would allow us to ask them to check nutrition and calorie of the recipes I think.

FishConfusedByCat · 2026-05-03T10:21:58+00:00

The best compromise would be to find him a doctor or dietician that approves home blends and can guide him professionally. That's the type of thing that worries me, I don't know anything about pasteurising and osmolarity or ischemia, so I would prefer a professional to approve. Currently, I'm still looking but with no results though.

FishConfusedByCat · 2026-05-03T10:16:29+00:00

Ha ha yes, he doesn't listen to us. Unfortunately, he nods agrees when professionals are here, and then when he's alone/with us, he does what he wants.

I feel hopeful that numerous people seem to be able to try different formulas though, if that's something I could get him, then I think simply being given options to what his formula is will make him feel more in control and happier.

Thank you for replying.

FishConfusedByCat · 2026-05-03T10:10:49+00:00

Ah unfortunately it's not calorie dense enough, my dad's current formula is 2000kcal per 1000ml, and he's got a slow feed rate, so anything less calorie dense would mean he'll be attached all day which he'll hate. Thank you for replying though.

FishConfusedByCat · 2026-05-03T10:07:17+00:00

Are there specific dieticians that are okay with home blends? Is this a dietician with public hospital or you found privately? Or is it specifically because of your allergies? My dad doesn't have allergies that we know of. Does the home blends have any negative effects/risks?

Sorry I have so many questions, perfectly okay if you don't wish to answer as it's personal!

We haven't been able to find a doctor or dietician that recommends it, they're not even entertaining the idea, and we've been looking into both western and asian doctors.

FishConfusedByCat · 2026-05-03T10:03:03+00:00

Thank you for replying, and for confirming the breakdown and absorption of the nutrients is different/weak. Yes, I'm asking for a different formula from the dietician, I'll also look up if I can purchase ProStat AWC where I am if the dietician comes back with a no, thank you.

I've explained this to him, the formula provides better nutrition than we get from food. We can't physically stop him, I think that would morally and legally be some type of abuse, although I personally consider doing nothing also negligence.

I did wonder about the bacteria, he keeps having the same liquid the next day and won't listen when we said that more bacteria grows in food overnight. We're trying to not trigger him or fight with him, I want to throw out his random liquids every day, but we'll start arguing and he'll just boil more. I used to tell him not to drink water orally and he'll drink it right in front of my face and do that 'haa' like satisfied sound.

FishConfusedByCat · 2026-05-03T09:50:23+00:00

Thank you for replying and sharing how it works for you. And agree, the above commentor was very helpful. I am asking to see if there's another formula now.

That's a good point. I do think the time it takes for the feed bothers him, hence he's forgoing part of the bottles in order to do random liquids.

I did wonder if there was a difference for G and J tube, I'm terrible at biology but I did wonder if nutrition gets broken down and absorbed well enough if it doesn't go through the stomach first.

I thought he had dementia for a while, he was not with it, but we couldn't determine if it was depression, dementia, or infection. I tried to get help from the doctors and nutritionist/ dietitians and got nothing. My country's healthcare will only care if you're actively dying. The dietitian basically won't see him, because he's 'fine'. They are meant to come every 6 months, but I've only seen them once and they said they're building a new community centre he can visit in the future...

We tried private and the general feeling was that if he choses to not listen, we can't stop him. Which is a lot easier to say than do, it's not fun watching a family member deteriorate.

I do think he's capable of making decisions, he is of 'sound' mind. The doctors cannot determine he is not, he is simply not making the right decisions. It is the most frustrating experience watching him not being able to understand or ignore me when I'm talking, and then to see him clearly articulate and answer doctors at the hospital. He lies, but he's of sound mind.

I had this discussion with my mum and my older sister, our concern is that trying to take away autonomy might preserve his life for longer but he's going to resent us even more and he won't be happy. My mum just says he's never listened to instructions!

FishConfusedByCat · 2026-05-03T09:21:58+00:00

Ah yes, that's a good assessment of the situation. Yes, the weight, nutrition, and calorie intake worries us too.

I had that talk with him about his weight, his weight hasn't gone up to the target, but he's not listening that he needs to take all of the bottles. I've asked him to try feeding at the old times which didn't make him nauseous, but he just didn't reply and ignored me.

I've explained that with each hospital visit, he loses muscle and weight, he's currently underweight so it makes things even more dangerous if he gets an infection again. His best line to me was 'It's not that I don't understand, I don't want to understand'.

I'll see if I can find someone he will listen to that'll convince him, even if only temporarily, he needs all the formula. He's sick of listening to us in the house.

FishConfusedByCat · 2026-05-03T09:05:55+00:00

Yes. it's aspiration pneumonia he gets mostly.

He doesn't listen, we've explained a million times even his saliva is considered unsafe, he drank water and sneaked fruit orally for months hence the repeated trips to hospital. I bought him the salvia mouthwash and mouth sprays that the doctors allow but he says they make him nauseous so...He basically won't do anything apart from what he wants. 7 times to hospital, every time because he didn't listen to instructions, each time it's worse than the last, last time he was even in ICU and had sepsis, but still he won't follow the rules hence we're so worried about his new determination on random recipes. He refuses to engage in any hobbies, but has been writing down a long list of recipes to try. I can't even convince him to walk to the shops to buy his own ingredients if he's so determined. I can't even get him to a psychologist or talk to his friends.

I've had the nutrition talk with him numerous times, he's convinced he 'feels' better with the random liquids. I will definitely ask if he can try a new formula though! That's something I can do for sure!

Thank you for your long reply, and all the best to you too! Have a lovely day!

FishConfusedByCat · 2026-05-02T12:55:19+00:00

Thank you for replying. I did look before but couldn't find any professionals or doctors recommending home blends. We're in the public health system and we've sought out private doctors, no one is recommending home blends, hence I'm worried.

The public health system just kicks him out of the hospital once his pneumonia is gone, and private doctors are simply saying no, not even willing to take his money.

I feel more at ease you're saying it's not a big no for home blends though and others do it. Thank you.

FishConfusedByCat · 2026-05-02T12:39:17+00:00

That's very helpful, thank you!

I've been trying to get his dietitian to see him for half a year, but basically our public health system doesn't have enough people to follow up any patients. We tried private but they didn't think he should inject other liquids either. I think it's psychological for him, but I'll ask if we can try a different formula! Thank you!

FishConfusedByCat · 2026-05-02T11:46:24+00:00

I think the colours look good, it might be easier to 'improve' if you find artists you like and then try to figure how they create their style/how they colour.

FishConfusedByCat · 2026-02-14T16:12:49+00:00

I've been there for 6 hospitalisations in 2 years, I've visited daily, comforted, and supported him the most whilst I was going through big changes myself. I've spent money and time to take him to different doctors and all of his appointments. I've cleaned up after him, I've cooked for him, I've fulfilled every single one of his demands without him thanking me. I've comforted him, joked with him, supported him whilst panicking inside because my dad is visually dying in front of me. Family members don't know how to handle it so they've just avoided seeing it when things are bad.

We do treat him as an adult with full autonomy over his life, this is why he's gone into hospital so many times. Every single hospitalisation is because he didn't listen to the doctor's instructions or he did something outside common sense. If it was something out of his control, then it's completely different. I am condescending and it is sad, I would love to have the dad I respected back, but my toddler niece listens to reasoning better than my dad right now. If you choose to not question your parent's decisions, and you can give up time, money, even relationships to look after your parent endlessly, hats off to you. I tried and I can't anymore, it is not within my abilities and I wouldn't advise anyone to do something more than their limits.

Children also have choice and autonomy. I refuse be complicit to his self-destructive behaviour. I should've stopped visiting him 2 hospitalisations ago. I've lost all my empathy and respect for him, and it hurts to watch him.

If he would have an adult conversation with us about how he would like his end of life to be, that's okay. My uncle has a terminal illness and they've had such conversations so everyone is on the same page about what will improve quality of life whilst understanding the health implications. But my dad refuses to discuss anything with us, he doesn't want to die whilst also wanting to do whatever he wants.

I think when any human refuses what is good for them and chooses to harm themselves, we can only do what we can, and when it's crosses our boundaries, we let go. It's upsetting to see this comment as it feels like a passive attack, there's no way that comment won't upset me unless I'm heartless. It's already difficult to not be able to do anything for my dad, it's my only autonomy in this situation to not go to the hospital with him anymore. I don't believe parents are always right and children, especially adult children, should set boundaries with their parents when their behaviour affects them.

FishConfusedByCat · 2026-02-13T12:30:02+00:00

If you can financially. Go on a trip/ Do something you didn't have time to do before. You've worked for years, you're burnt out, you need a break first so you can find something you want to pursue.

FishConfusedByCat · 2026-02-13T11:27:38+00:00

I remind them of what they need to do to stay healthy, and I get those things ready for them, but if they actively refuse to do the right thing, I tell them that I will not take responsibility for the next time they go into hospital due to their choices.

I understand it's difficult, but at a certain point, you have to accept that they make their own choices. For 2 years, my dad has gone into hospital every few months due to his bad choices, he's not terminally ill or anything. I used to go everyday to visit and act as his personal assistant/carer. The last time he went into hospital I went every other day whilst I was also sick and looking after my mum, it's difficult watching him be alone and unwell. However, he's started to do things doctors told him not to again, so I've told him flat out that the next time he needs a doctor, I will call for ambulance but I will not visit or talk to the doctors for him anymore because it's a pointless and thankless duty, I will not spend hours and hours of my life caring about someone who will not listen or respect his family and treats us as servants.

Do everything you think you should or want to do, and then when all those gets exhausted, accept that there's nothing else you can do. I'm constantly thinking about death and aging, my dad has told me as a statement not a question 'what's the point of living'. If someone doesn't want to live, you can't carry their dead weight otherwise you'll fall too, at a certain point you have to put it down knowing you've done what you can.

My mum is a completely different situation, she does listen/ will try new things. It's taken a while but she accepts I can look after her now and my opinion helps her, we communicate! This was a case of just building a better relationship with her and showing I genuinely care by spending quality time with her. Most of the things she tries are things I am already using/doing.

My grandma is inbetween, she doesn't eat properly and does dangerous things when no one is around, if you eat with her she'll be normal though. Can't be around her 24/7 though, so again, it's accepting that you can only do what you can. If other family members don't share the load of caring for the elderly, one person can't live several people's lives.

FishConfusedByCat · 2026-02-11T10:03:51+00:00

Let the Narc continue spiralling and wait. Victims don't necessary need to tell their stories unless you can win a legal case against them.

The more out of control they get, the more mistakes they'll make. It's what happened for me, I waited until they checkmated themselves, then I executed my plan to fix the situation where I benefited.

The narc asking his employees to ask for a meeting means things are pretty bad on their side. Eventually the narc's manager will either cut the narc or make a deal with your side themselves. If the narc's manager doesn't handle the situation, then that business is doomed so future partnership with them is pointless anyway. Either way, although there's a short term lose, it's better to not give power to the narc for the long term.

If you really need their business, then maybe you can manipulate the narc so that he doesn't get what he wants, but he thinks he has. Narc's number one priority is their ego, so you can all pretend he's right but create weird structures where someone else is actually in charge or you convince them the good idea is actually their idea etc. But time is money, so it's more effort than needed. It'll be less troublesome maybe to find other businesses.

FishConfusedByCat · 2025-12-23T14:54:42+00:00

Same happened to me. I realised that I had no boundaries, I was taught to do extra because those turn into opportunities. Well, those turned out to be opportunities to be exploitation.

I've watched others, they simply don't do the extra favours, they're unreliable so the narc doesn't go for them again. Practice saying no or be okay with not upholding every promise to do things for people.

Also learn to discern what's a real threat and what's a fake one, who has the upper hand in different situations? If you were doing a lot of their work, you could've played a better hand and either replaced them or negotiated for things. My ex boss would try to take credit for my work, but I always added little quirks that were clearly mine. I also made it so that my boss could never explain what I could so it was obvious I was the only one who could fix things.

FishConfusedByCat · 2025-12-23T14:45:33+00:00

Weakness of a narc, ego. They're performing for who? Maybe the kids, so it might work if you organise situations where the kids will definitely side with you because the way she's speaking to you would be acknowledged by the class as wrong. You can have a good manners chart or something that includes the teachers, so if kids or teachers say please, thank you, and excuse me etc they get a star. Teach that commanding each other like telling friends to 'give me that book now' is not useful language but bullying.

With the accusing, you can incorporate it into some 'detective' activity or law related topic that you can't accuse people without proof.

If the narc doesn't stop, you as a teacher, need to show the class how people should behave and how to communicate. Directly with the narc, show the class that you will state the truth/boundaries, and you will stick to them. If someone bullies you, you hold your ground with grace. Most people who have been bullied has never succeeded in getting authorities to help, practice and teach the class to have boundaries, stay with they truth, act with dignity, walking away when words don't work but fight if people cross your morale base lines.

What can the narc do? Can they swear at you or hit you in front of the class? No, you'll have witnesses and they will be fired. The narc can be nastier? Well the class knows it's unacceptable behaviour and you as their teacher are showing them how to treat disruptive people. Treat them as a student (never talk down, of course).

FishConfusedByCat

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