Dad 91 on hunger strike - what can we do?

[KavvLar]

My dad is 91 and mentally sharp, he's physically been OK, limited movement etc but no chronic illnesses. In the last couple of months he has rapidly declined. He had a urinary blockage which took him to hospital and he has been catheterised since then. The experience shook him, he's not getting on with the district nurses coming in to change the catheter, and he's generally very angry and refuses to engage with any services.

He's at home, he's now refusing to eat and hasn't eaten since Saturday. He'll drink sugary coffee and water but that's it. He is trying to hold it over immediate family saying he won't eat unless... X and y are done which are impossible to achieve (I.e
bring this journalist to my house, take this matter to court - things you just can't do).

I'm reading about this and not eating does seem very common at end of life with elderly people. I think he has given up. I can see he is scared and getting very weak, sleeping a lot. However it has come on so quickly and for him being in otherwise good health it is alarming to see him deteriorate so quickly. Hospital and doctor not fussed - doctor came out and almost rolled eyes at us for fussing because he's 91. We're just alarmed by the rapid change, we don't know what to do for the best.

Is there anyone that can give us any help or advice? My mum is at home with him, he's horrible to her (which predates this) but she is scared that she's alone with him and doesn't know what to do. She is due to meet her GP tomorrow so any pointers on what to ask for would be very helpful. We're at our wits end.

Thanks in advance.

[Pumpkintopf]

Hi op, sorry to hear this. I have no medical experience but I wonder whether you could push your GP a little more , your dad having previously been in good health they should be taking these changes seriously.

Could it be dementia perhaps? Just asking as there seems to be some personality changes?

[FadedRed]

Couple of things: with an indwelling catheter the risk of urinary tract infection in very high. This could be causing the apparent personality change and might be amenable to treatment. Has a urine sample been sent for laboratory testing?
Secondly: do you know what caused the original blockage problem? Prostate cancer is very common in elderly men and could also be causing other symptoms, like uraemia (causes confusion), pain, possible secondary spread to brain (confusion, personality changes), lungs (lowering oxygen exchange causing confusion) etc etc.
The problem here is what is not just why he is like this, but also the what is in his best interests in regard to the future.
Sorry you are in this situation, Op, it’s never an easy road to walk.

[Namenic]

Has he always been unreasonable in his demands? If he is usually more logical, you can try and explain this to GP that there may be an acute physical (eg infection) or mental (eg depression) reason for his change in behaviour. If he had had a sudden change could he have had a stroke?

Investigations need to be considered carefully because you have to think about whether the result will change the treatment. Some tests are less invasive than others

[Pumpkintopf]

Also, read on here about the impact UTIs can have, as a pp has mentioned- this seems a useful link - https://www.alzheimers.org.uk/sites/default/files/pdf/urinarytracttinfectionsutissand_dementia.pdf

[KavvLar]

Thank you all for replying.

He has always been unreasonable. He'd rather write to the papers than to the appropriate body for example. Now it's just intensified.

He's never expressed a solid wish to die before now. He made an active attempt to take his own life when he was last in hospital (cut wrists with a broken tea cup from the hospital). He was very clear that was what he was doing, wrote a note, told my mum. Hospital did not seem to take it seriously.

Mental health teams had assessed him two days prior to the attempt and found him fine. Then assessed him two days after the attempt and discharged him. Their take was it was a reaction to being in hospital and he wouldn't be a danger to himself at home. This was Saturday, and he hasn't eaten since. No follow up. No one seems worried.

They tested for urine infection when he was in and said it's not an issue. I don't know what the blockage was unfortunately no one told me. Mental health team ruled out dementia. I know that nearing end of life it's often a case that elderly people stop eating but this isn't at the end of an illness. It doesn't feel right to just let him stop eating but I can't reason with him either.

[KavvLar]

We called 111 because we were worried and a doctor came out, he talked to him but didn't do any physical checks, and as he went out the door said to my mum 'I know it's hard for you but he's 91 what do you expect?'

[Jemima232]

What a difficult situation for you, OP.

I have worked as a HCP with elderly people and I have seen this before.

It's awful for the family. You say that all possible medical causes for this have been ruled out. That leaves psychological causes.

You make the very good point that this sudden cessation in eating is not due to his having a terminal illness, so why is he doing it?

He does come across as a difficult and demanding man if I'm honest, OP. People who have had issues which they feel were never addressed do frequently want to speak to the media, in an attempt to find a resolution.

Is he the kind of man who has bottled up one particular grievance, and revisited it throughout his life, in one way or another?

Or has he had a fright after being in hospital, having seen what awful care (in his eyes) is sometimes given to the elderly?

He may think that it's better to end it now, while he's still capable of doing so, rather than either get dementia and gradually deteriorate, or suffer cancer and die in (possible) pain.

Did he witness any incidents of poor staffing/poor care while he was hospitalised?

Any of these things could have (and I suspect, did) push him over an already fragile precipice.

What do you think?

[Jemima232]

Also, he's had one suicide attempt while in hospital. He would be frightened about another overt suicide attempt as this would likely lead to mental health HCPs becoming involved, and a possible admission to a psychiatric unit.


By starving himself to death, he achieves two goals: he dies, and he makes his family, who in his eyes have not "stood up for him" watch the process.

Some elderly people do just want to check out.

[KavvLar]

Jemima I think you're right.

He's always been difficult. He won't go to his GP as he didn't like how they handled something a couple of years ago. Normal thing would be to move GP which I offered to facilitate multiple times. Not him.

Instead he maintains he hasn't got one, creates a whole file of related paperwork with letters he has sent. The letters are hard to understand and are full of veiled double meanings rather than saying what he wants. He then shows them to each medical professional he sees which they don't have time for, and with each interaction the file gets bigger.

Then he needs care so he chooses to ring 111/999/the police /district nurse until eventually an ambulance is sent. He is so difficult for the staff once admitted. Firstly he refused to leave the hospital because he didn't like the district nurses coming in weekly to change the catheter. They had to get security in the end.

Then he wanted to leave but they needed him to wait til the mental health team assessed him. He was abusive to staff members then tried to kill himself - I don't doubt out of true intent and misery but also I'm sad to say I suspect to make a point about how he'd been handled by security.

Basically they were so keen to get rid of him that they put him in a taxi and paid the 20 miles for him to go home.

It's so disruptive for the services and I want to curl into a ball when I hear but I can not change how he behaves. At all. No one can. He lives with my mum but she is equally unable to influence him. Surely though we can't just stand by and let him starve himself to death to make a point?

[Namenic]

Oh dear. He sounds like he has a mental health condition. Is it similar to anorexia? I wonder if mental health services could get involved? They can have specialist nurses in the community to keep an eye on patients. At least they may help with a plan for him?

[KavvLar]

I'm not sure Namenic but I will check it out. Thank you.

[FadedRed]

KavvLar when I started nursing in the early seventies, there was a phrased used that stuck with me about patients who decided to die. “He/she has turned his/her face to the wall.” It’s likely this is where your father is. Once infection/metabolic imbalances/medication confusion/mental health have been ruled out people just die because they don’t want to live any longer. Sad, but there may be little or nothing you or anyone can do to thwart this desire. At 91, with him considering his last dignity gone, then maybe this is the only thing he feels he has any control over.

[Namenic]

Sorry - just read about the mental health teams. But it isn’t really normal for him to be starving himself? It sounds like you are doing your best for someone with a difficult personality. They might not be able to do much but it might help if they could make a plan to guide how to treat him (eg if he hates the hospital, they can negotiate if he would/would not want to be admitted or tube feeding or I’ve antibiotics). If there are small things that could be done that may help eg a carer visiting, he might be persuaded, but i’m Not sure there’s very much that else.

[Jemima232]

@KavvLar

Surely you can't just stand by and watch him starve to death to make a point

I have a feeling that this is what he wants - to starve to death and to make you watch, impotent, as he does it.

He's probably enjoying watching you all becoming ever more upset by his behaviour. Apologies to your dad if I'm wrong, but he does sound as though he takes offence easily and cannot see rational solutions to problems.

You do have my sincere sympathy as I watched a friend go through the same scenario two years ago. Very, very similar circumstances, too.

[Jemima232]

@Namenic

I have to say that this sounds very reasonable - but this man doesn't have a history of behaving reasonably, which is beyond unfortunate.

I have a feeling that he would refuse tube-feeding out of hand.

[KavvLar]

@Jemima232 yes to all of that. And layered with resentment that we aren't 'jumping to it.' and are treating him badly. It's actually very cruel. He doesn't want company or hand holding he wants action that's impossible to deliver.

Assuming he will fight tooth and nail to avoid any medical intervention, what are we supposed to do? Where can we get any practical advice? Medicine to make him comfortable maybe? If he is determined to die at home and that is deemed acceptable by the medics and I can't force him to eat - it feels horribly negligent and complicit to just hang around and wait for him to die.

[Singlenotsingle]

Everyone has to die sometime, and I can never understand why we seem to fight to prolong life forever. Your df is right at the end, it sounds like he's experiencing some form of dementia, and he probably wants to go. He's 91. Just make him as comfortable as you can and ignore the histrionics.

[RatherBeRiding]

Everyone has to die sometime, and I can never understand why we seem to fight to prolong life forever. Your df is right at the end, it sounds like he's experiencing some form of dementia, and he probably wants to go. He's 91. Just make him as comfortable as you can and ignore the histrionics.

I have to agree with this. If he's of sound mind, then he is capable of making whatever decision he chooses and if that is to not eat and die as a consequence, then I'm afraid there's not a lot you can do. It sounds harsh, and it can't be easy, and he has obviously had you dancing to his tune all his life. But there it is.

In your shoes I'd listen, sympathise, offer to help (only what you can realistically do though - do not be sucked into his impossible demands), and leave him to it.

[Jemima232]

OP - you ask about making him comfortable as he dies.

Please ask for a visit for you from the end-of-life team of district nurses, who will have seen all this before, so that he is on their radar.

They will liaise with your father's GP. When your father starts to decline and go into organ failure there are many, many medications that can be given to ease his passing, via a small tube placed under his skin, which he will not feel. If he is not deemed to have capacity at this point they will make a judgement call and will assess the level of suffering and do all they can to help.

I was a specialist dementia nurse and I was also Matron of a nursing home for the elderly. I nursed dying patients for years. I assure you that there is a lot that can be done within the bounds of ethics to help him to die peacefully.

You can PM if you want.

Wishing you well.

[Jemima232]

It doesn't sound like dementia at all.

It sounds like he has a plan which he has implemented. People with dementia forget to eat and then gradually die because they reach the end of the road, neurologically speaking.

Someone with dementia would not be able to follow through with a particular plan as they cannot remember, from minute to minute, what that plan was.

[TabbyStar]

No specific advice, but just empathy. My father isn't this far along, but he has said he's ready to die, he restricts what he eats and as a result is so bony it's painful for him to even sit, and has also been quite demanding and irrational all his life and everyone else is an idiot. It's a hard place to be. How is your mum coping and what does she want?

[Namenic]

Much sympathy, it sounds like a hard situation. Perhaps just for your own and mothers’ sake ask for a mental health review (either from GP or psychiatry) to see if there is any reversible problem with his mind that could be leading to this behaviour.

If this was a young woman with this problem, people would at least assess to see if this is likely to be able to be changed. Sometimes The likelihood of behaviour change is very low and while perhaps a young person may be persuaded to change, because of the potential of good quality of life after, this may not be true for someone with more medical issues. At least if you have an assessment and plan, you can have peace of mind and will avoid things he doesn’t like (eg if he didn’t want to go to hospital or to eat or have medications which he doesn’t like). As jemima says, if he needed any other medications to control symptoms of pain, breathlessness, nausea there are things that could be given.

[Hearhere]

he wants to be in control, let him have control

[KavvLar]

Thanks again to everyone who has offered advice.

An update - the GP visited today and worked like an absolute boss until he got him readmitted to hospital. He said he had had a urine infection (which the hospital hadn't told us) and had not been taking the antibiotics they had given him nor any of his heart medication, so his decision making wasn't sound. So he has agreed to go back in for some treatment and to make a plan.

Notwithstanding my dad being an Arse, I am so shocked at the effort the GP had to go to to get the right assistance. NHS staff are brilliant and I really feel for them, it seems they have not got the support or resources themselves to keep a handle on these situations.

[KavvLar]

Tabbystar my mum just wants a way to have him looked after and comfortable. She'd be happy to pay for carers if he would have them but he won't. She is scared of being left on her own and scared of him dying. And scared of him if I'm honest, he's not a very nice man.