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.

I'm glad to hear you have got better help from the gp and he has been readmitted - I was going to post about urine infections causing dementia like symptoms but others have already. Have you had a frank talk with him, asking if he has decided he wants to die and if so what he would like done to make him comfortable?

Twillow I've spoken to him as far as I can and managed to get him to go along with treating the problem.

He went willingly with the paramedics who were unbelievably good and patient with him. They were very concerned as he hadn't taken any of his heart / diabetes meds either so he's all over the place. I hope this cooperation is a sign of things to come and we can make him more comfortable once he's been cleared.

God bless the people who work in the NHS. And all of you who look after elderly or vulnerable people. I do not know how you do it.

@Tabbystar I meant to say I'm sorry to hear you're in a similar position. Feel free to pm also if you want a rant buddy

Thanks KavvLar I was thinking you sound remarkably calm considering how you describe your dad, my mum takes good care of mine, but talks as though she hates him, he's very vulnerable physically and I do feel sympathy for him and I try and be nice when no one else is being nice but then he says something stupid (sexist, or how I'm no good at something, or just a rant about education or something) and it's so difficult to actually form any sort of bond with him. It's so conflicting, and I presume it's similar for you, yet you sound lovely in wanting the best for him. Hope he's comfortable whatever happens .

Bless you. This all sounds very distressing for you. You've had some great advice. I really hope hospital helps. Of it doesn't and he doesn't change then I think you go hard on him and call his bluff. Before he comes home you have a serious chat with him. 1 - Dad, if you want to come home and won't eat it's to much for mum. You have two choices you either agree to carers coming in or we won't allow you home and will find a home for respite care/for you to die in. 2 - If you don't want to eat. that's fine, it's your choice. But we aren't going to offer anymore as we can't keep having the same fight. But mum needs to eat to keep her strength up so we are taking her to ours/a carvery/name something he loves and follow through with it. So he knows you won't play his game. See how you get on when you are no longer fighting with him. (Do grandkids visit? Would they happen to be eating his favourite chocolate/sweet they could innocently offer? If he accepts they could leave the packet in reach....) Also if he does start to drink/eat more get some high calorie build up drinks to regain his nutrients. You can ask a doctor about these.)

user thank you I have only just seen your post.

He's now in hospital. Still refusing to eat (been 8 days now) or to take medication and they're trying to discharge him. Vague talk of 'social services coming to help' but no specifics and they can't make him eat any more than we or the hospital can.

Jesus this is a nightmare. My poor mum doesn't want to stand idly by while he wastes away, but she doesn't want to leave him to die alone. He is the stubbornest fucker I have ever known.

KavvLar really sorry this is happening. My DM attempted to kill herself by not eating last spring/summer and it was very hard - she didn't eat more than the odd ice lolly for two months and was ketonic at the worst stage. She was very very clear about what she was doing and had capacity so out of respect for her wishes and autonomy I had to almost just watch it happening.

In the end she couldn't maintain the focus to keep going (she has PCA, a sort of variant of Alzheimer's) and started eating again out of the blue. Whilst I'm obviously glad she's not dead I do have mixed feelings because she is desperately unhappy as she basically observes her mind deserting her. That's really how I achieved something of a sense of acceptance last year - I knew how despairing she was and that she genuinely wanted to be dead instead.

Given that he's 91 and still mentally sharp, I think he's entitled to stop eating, if that's what he wants. Maybe he just doesn't feel like eating any more.
As a pp said, maybe he's just had enough now, especially after repeated infections/catheters/hospital, etc.
I have known this with a relative of a similar age, who hadn't even been ill. He just said he was tired and had had enough, and died not long afterwards, of nothing in particular.

My Grandad did this, wouldn’t let the carers in, barricaded the front door so they couldn’t let themselves in. He was in his 90’s and had lost my Grandmother decades earlier. He was just tired and didn’t want to carry on. As a PP said I would try offering meal replacement drinks, and try to make sure he stays hydrated as much as possible. I also agree it would be best to have him cared for outside the home for your Mum’s sake.
I wish you all the best, such a difficult situation.

If an elderly person genuinely wants to slip away shouldn't we respect their wishes?

My mother stopped eating and rebelled against the high protein drinks she was being encouraged to take. With hindsight, I wish we hadn't badgered her so much. At Christmas she said to me "I can't do X, Y, Z - what have I got to live for?" She died at Easter. We did our best to make her happy, but persisting in encouraging her to eat didn't help that.

But everyone's situation is different.

If he has capacity, then he can choose to do whatever he wishes so long as it is legal.

If he is choosing this course of action to cause hurt, then don't engage with the dramatics of it. It sounds harsh, but he eats or he doesn’t - his choice.

You may find it easier to change your focus to ensuring your DM has the support she needs.

He's back home now and eating again. He can do what he wants I suppose, but it had a kind of cruel streak to it. I have my suspicions that he was sneaking food on the quiet and then loading on the guilt trips. My mum really needs to get out of there he treats her like absolute crap, but unfortunately the only person that can make that happen is her. It's very very sad and stressful.

Your DM can ask Local Authority for a carers assessment for her. I'd advise this . DF doesn't have to agree to it, nor to have his needs assessed (although that would be helpful) but as it's her carer assessment (you can ask for a face to face one, not a telephone one) it'd be someone for her to talk to and who can put her in touch with local carer support groups and carers counselling services. If he refuses care and has capacity to do so, then she can go out a few hours here and there to get that support. At the very least the LA (adult services) will have her details so that if /when he needs help, they'll know a little about the family through her carer assessment.

By local authority, I mean the local adult services dept. Look up the number to refer online to, by googling his local county council and finding adult care section. Your mum will need to be with you when you refer her if possible, or at least you have her pemission (& full details including GP etc), and plan for her to be in a separate room at home away from dad (maybe someone else in family can distract him) or to meet SW at your house for her actual carers assessment - as it's about her and she needs to be free to talk about how his behaviour impacts her.

The SW will offer to assess his needs at another time, as well but that requires his permission (unless he lacks capacity to consent to that). It will be really helpful in your situation to have this wider support for your DM, not just resting it all on family shoulders who may be equally stressed or baffled by his behaviour.

She might listen a bit more to professionals or accept some sort of carer groups or support that she can go to. It might be small steps at first but it will all start to help untangle it /clarify it in her head for her.

Nb If she says, she'd prefer to just talk to family, please explain to mum that even professionals in the field would arrange a carers assessment for their own mum in this situation, precisely because it's so emotional and difficult to navigate.

Thank you @WillLokireturn

He had a stroke late last week (due I believe to stopping taking his heart medication) and he is now in hospital again. Heartbreaking and also very upsetting that it could potentially have been avoided.

I'll let my mum know about the carers assessment. Thank you very much for the advice.

OP, as others have said, he's 91, at that age no meds can keep you alive indefinitely. The stroke would likely have happened earlier and been fatal without the meds. My Grandmother ended up in a care home for the last 10 years of her life, 7 of those just reverting back to infancy. Not with dementia as such, but just a complete physical decline. She visibly shrunk, became baby like, needed round the clock care. It wasn't nice to watch and I'm sure it wasn't nice for her.
At times, medical advances can be seen to have caused more misery than necessary.

Sometimes infections can make elderly more aggressive, but if he has already had a failed suicide attempt, i think more urgent action is required as he has lost his mental capacity. Please ring your GP or Crisis Team urgently.

Xmas the mental health team have assessed him three times. Once before the attempt and twice after. They say he is fine and has capacity to make decisions.

Unfortunately they are just really shit decisions. My sister has bipolar disorder which affects her behaviour very seriously on occasion, he has many similarities and I wonder if he has it but has flown under the radar / was never diagnosed.

Soontobe I'm sorry about your grandmother.

We are going through something similar with my FIL who has a lung disease and we are unsure how much that was causing it, but then FIL told us he did it deliberately- it seems to be about control. He did say he felt maybe losing weight could help him with the lung problem but it was getting extreme. Also a difficult character. Sorry not much help, but other seem to have it too. he is also taking it out on MIL. Not easy.

I read something online about 'anorexia of ageing' which seems quite common. www.todaysgeriatricmedicine.com/archive/SO17p14.shtml

How are things, @KavvLar

I've been thinking about you and your family a lot.

Sending love in this awful situation.

❤

@Jemima232 thank you for checking in. That's really nice. Things are still very fraught. Dad is at home still refusing paid help and still causing havoc. My sister is going through a manic spell and I'm trying to keep calm and keep my little family from being completely derailed.

My friend emigrated so I kept a weather eye on her parents. Her mum started with dementia her dad 94 just stopped eating he was compos mentis, I visited him at the home, he would drink a cup of tea. He told me it was time, told me some lovely stories of his life, his daughter the last time I visited he was in bed, they moved him to a lovely room downstairs where they could keep an eye on him. It was his wish which we all respected. The retirement home said they had seen this time and again. They were lovely with him.

A friend of mine is going through this currently with her mum, 87, who has some physical and mental health issues. I think she’s had enough, and just wants quietly to fall asleep and not wake up. I’m inclined to agree with the posters who say that prolonging life, loads of GP visits and assessments etc, when someone is very old is not always a positive thing. Some people just want to drift away in peace.

Sending positive thoughts to everyone who’s going through this. It’s really tough.