How awful is it when you secretly think it would be a relief if they died!

[BeachBlondey]

You can’t say this out loud, can you? My dad is an alcoholic and has been for 40 years. He ruined much of my childhood. He’s also morbidly obese as he's addicted to food. He has been in and out of hospital now for a while. It’s exhausting. Every day is centred around what is happening with him and what he needs. I love him but would be secretly relieved if he died. How bad is that?!

Well, personally dh and I have done something about it. Our H&W powers of attorney state very clearly in which circumstances* we want no life-saving or life prolonging treatment.
*basically, unable both to care for ourselvesAND speak with full mental capacity for ourselves.
We can all do this!

Its not awful
My Mum dies last year and spent her last year in pain, partially incontinent and with no quality of life at all. She was also terrified of going into care after a horrible incident during respite after an operation.
She died in her sleep at home and it was a relief for everyone.
I loved her and I miss her but I don't wish she was still here

Yes, we have done this too but I don't know if it would count if we got dementia.

@PermanentTemporary , actually, my DM’s care home staff agreed with me 100% when (by a certain point) I said there was to be no ‘striving to keep alive’, so no hospital, drips etc, unless absolutely necessary, e.g a 2nd broken hip.
And I asked the GP of an aunt in her care home, late 80s, umpteenth UTI, refusing food and drink, what he’d do if it were his much loved aunt. (I’d been asked to decide).
He said he’d leave her where she was, where there’d keep her comfortable - it was only going to happen again, probably quite soon.

She drifted away quite peacefully after about a week.

Assisted dying is one thing, but IMHO we need to start by talking about unnecessary and artificial prolongation of life first, such as the triggering of the reflex for feeding by carers.

Absolutely could not agree with @funnelfan more. Assisted dying is important, but a side issue that will affect very few people. Hundreds of thousands of people are being kept alive at huge financial cost to the NHS, huge emotional and practical cost to their relatives and huge cost to the dignity of the individuals.

As individuals we can have advanced care directives and respect forms. But we also need a wider conversation across society. I remember crying down the phone at a doctor who thought I was upset that they weren't doing enough for my dad. I was upset that they were doing too much (nose feeding, x-rays that might have broken his bones as he was so bent over, intravenous antibiotics - he had signed something saying he didn't even want to go to hospital). Through my tears I said, 'don't make me say it'. She said, say what? 'Don't make me have to ask you not to throw all you've got at him.'

God - why arent we addressing this?? Because the gobby minority have NO idea what it is like being on standby for a person that has little quality of life and who thinks it will open the flood gates for people to try and 'do their relatives in for the money'. It always seems to close down any sensible debate on this.

And 100% agree re bankrupting the NHS and the LA's to provide adult care for those people. We honestly cannot carry on like this.

Are we going to pat ourselves on the back when a Doctor does a heart op on a 95 year old who has dementia, and gets wheeled back to his care home where they are bedridden and have the family on permament stand by for the next crisis where they will be called in to make the next decision. Doctors give themselves high fives keeping that person alive but its not right.

I feel this too 😓 my grandmother is almost 99 years old. Me and my sister are her closest relatives - my mother was an only child and died 25 years ago. My nan has done so much for me all my life but it's so difficult to watch her decline. For example, She always wore beautiful clothes and to see her in stained clothes that are far too big for her is heartbreaking. (I do try not to let this happen but she does not accept help easily). She has always been quite a negative person, glass always half empty, and now only talks about her illnesses, medication and how much she wishes she was dead. I find myself hoping that she will go to bed and never wake up and then I hate myself for it.

My Auntie died in a care home whilst suffering from advanced dementia and it was hell. She was bed bound, incontinent, not strong enough to sit up, skin and bone, lost most of her appetite and had developed a reflex of shouting out for help (even when I was sitting with her holding her hand). She actually died of a burst stomach ulcer which bled out (had various gut issues all her life) and if it wasn’t for that I dread to think how much longer it would have been.

The Christmas before she died in April, she was admitted to hospital with bronchitis. They treated her with antibiotics and oxygen and delivered her back to her care home. I have asked myself many times, why, why, why did they treat it? That last three months was brutal. It may have been at my DM’s behest who was her next of kin (Auntie never married nor had children).

Some years ago, I had an elderly cat who had become very confused and took to howling about the house, leaving her food and toileting in the wrong places every day. After about 9 months, I took her to the Vet where I was with her at the end. Draw your own conclusions.

And 100% agree re bankrupting the NHS and the LA's to provide adult care for those people. We honestly cannot carry on like this

The Liberal Democrats have a manifesto policy for free social care for everyone. Mum pays £1.3k per month, multiply that up for all service users across the borough and there’s no way the English LAs will be able to cover that without a massive change in funding. It’s bonkers.

I’m out of step with a lot of popular thinking. My aim of having savings/pensions/owning a house is so that when I’m old and infirm (hoping I live that long) then I will have security for a rainy day. And needing care means the rain has arrived. Mum has some savings thanks to dad’s occupational pension offering her a lump sum in lieu of a widows pension, but that is dropping rapidly and I’ll apply for a financial assessment soon. But her house is worth a ridiculous amount of money which would pay for years in a really plush care home - I don’t see why the tax payer should pick up the bill for care while mum is sitting on that asset once her savings are below £10k or whatever the limit is. My DB and I should have no expectation of inheriting six figure sums at the tax payers expense.

So alongside the human cost of living past the point of awareness and dignity, there needs to be a fundamental change in the finances. Maybe a long term reworking of National insurance to cover entitlement to a basic dignified level of care for everyone on the basis of need, that can be topped up with private policies or savings for those who are able and would want more choice or luxury. Like we do for pensions and healthcare. I’d like to see some other ideas in the manifestos though.

Don't blame yourself for these thoughts. I have very abusive parents and my head goes to those places, it's very natural.

We had to have an elderly sick pet PTS last Monday.
I had her head in my hand and her paw in my other hand and she peacefully slipped off in a matter of seconds, it was a real contrast to what I have seen several times with humans.
I have no idea what the answer is really but keeping people alive no matter how low their quality of life just isn't right

OP, it’s normal, and often compassionate.

It doesn’t mean you don’t love him, and the relief and the knowledge that ‘in the end, it’s the best thing’ won’t stop you feeling sad grieving, either.

It's so difficult because I do see what advocates for disability rights mean - to state that because my DM has this, that and the other deficit, is it those deficits that make her quality of life poor? Well, yes, based on what she previously said to us. But where does that leave a person with those disabilities who wishes for all the life and treatment that they can have?

I hope we can find a path through these extremely sensitive questions. And I still hope, every day, that my mum can be free at last.

It's a normal feeling and a pp said, you don't need to wait, you can end the relationship now. It's hard but you don't owe him anything.

It's perfectly acceptable to feel that way. Caring for a loved one for many people leaves you 'empathied out'. It doesn't mean you are a bad person - it takes a huge toll on your own mental health. Take care of you, and stop beating yourself up. X

I think it’s completely normal to have those feelings in the situations described on here.

It’s so refreshing to see some open and honest responses. As you say you couldn’t air them IRL necessarily but as pp have pointed out, we prolong life and extend it so much now that it has negative consequences. It’s not as though they are all living happily in a retirement home enjoying, they don’t know what’s going on most of the time, in patients with cancer they are often in pain and it must be as frightening for them as it is exhausting for you guys.

It’s understandable to want them to slip away peacefully in their sleep a d know they are no longer suffering.

I went through the same with my mother. She was a wonderful woman & I loved her dearly but I wish she had died a year before she did. It was awful watching her die of Alzheimer's with no quality of life, constantly frightened & inconsolable.

I recently had to go to A&E and by mistake I went thru the wrong entrance. A nurse took me thru triage to reception so I saw everyone who was being treated. 99% of people in there were in their 80s or 90s and looked as though they were near death. No-one waiting was admitted, including me. A man we were sitting by had had a mini-stroke and he gave up after 16 hours and went home. Because A&E was full of people who, I believe, should have been allowed to die at home with a nice hit of morphine. Like we'd do for any dog, cat or hamster.

The big mouths with no experience will come out and scream every life is precious, throw everything at them etc etc. Often on these threads someone will come on and say it was an 'honour' to care for a parent and indicate the rest of us are just trying to find an easy path for US.

The cost of all of this is horrfic and wont get better any time soon. My FIL is becoming quite forgetful (late 80's) lives independently and one of his children seems to treat him like he is 30 years younger. Says well he told me it was OK so what is wrong with that? What she doesnt recognise is that when an elderly parent says something they dont necesarily mean it. It could be face saving, confusion or thinking they could do it (just like in their younger years) but cant.

It's not awful at all, it's completely honest.
Quality of life is far more important than longevity but, sadly, medical advances can sometimes keep people alive for far longer than is ideal. It is the curse of our age, and the downside of the advances in medical science.

@Tracker1234 perfect post. As for the OP @BeachBlondey I salute your honesty. Anyone saying it is a privilege/honour/aren't we lucky to still have them ( elderly difficult parents) around - I very much doubt you have experienced years and years of trying to help them - them resisting - crisis happening and then needing to navigate their awkward approach to you getting help in. My DF is in a nursing home now, years after care should have been found and also him and DM utterly refusing to move to more suitable accommodation or even adapt the property. Money was and still is no issue. DM now alone in a house that is falling apart - no tradespeople will engage as she is utterly rude to them. Won’t allow a cleaner in - in fairness the cleaner we got knows her in the village and actually declined the job. Garden is a mess. Organised a local guy last year. She refused him entry. Guess what. The garden is now a mess. Rant over. In terms of cost to the local authority/NHS with the help of the manager of the home and nursing staff we secured full CHC so in terms of financial impact on DM ZERO spends from her very healthy bank balance. In real terms for the LA DF has cost them circa £40k since admission. £40K. Having both DP moan constantly about getting nothing out of paying in all their lives I reckon free nursing care, a triple lock pension and growing up in the boom years of the 1950s etc isn’t anything to moan about. Sorry, we need to address this keeping people alive with no quality of life. I do fear for our generation- mid 50s plus. So as others have said more articulately than me, I will not be sad when they are gone. It will be a massive relief. I would love to be able to move to live near my own grown up kids and their families but DM is so manipulative it is impossible. We had also started spending more time as retirees in our home overseas. That also now seems and impossible dream.

Echoes my own experiences. My mum, in her nineties had a miserable painwracked last year of life. She wanted to go. I wished she’d passed away in her armchair, cup of tea, watching Corrie, but it wasn’t to be.

Blue - why not just go abroad. You will feel one step removed. What is going to happen if you go? Another person will have to deal with the fall, crisis etc etc. I had people calling me about something a parent had said or done. My late Father took to grabbing some of the carers bottoms as they helped him. He was in a care home. Yes, he probably didnt always know what he was doing but I told them to really tell him off. He had some memory loss but lets try and stop making excuses for some elderly people's behaviour.

A friend of mine is mentoring some new nurses in the NHS. She said that some elderly men wet themselves on purpose so the nurse on duty (carefully chosen to be pretty and inexperienced) has to change them. They sometimes complain about a pain on their willies. Its all got to stop.

Its the guilt though isnt it. I was very firm especially with Mum. She would say one thing and do another and guess who had to pick up the consequences. In the end I am rather ashamed to say I said if she cannot live independtly with a cast of 1000's calling me for every little thing when I lives miles away a a care home would have to be looked at. She then cried... its all so awful for us the carers. The older people often dont want to be here either or are riddled with dementia, cancer and on we go.

@Tracker1234 sound advice about keeping on with plans. I have done for the past few years always coming back regularly but the phone calls are soul destroying. Negative - I put things in place like food delivery- it’s never right - I’d love someone sending me a Waitrose delivery weekly of really nice easy to prepare meals. She won;t accept anyone coming in at all. So when I am in the country it is just constant washing for her, bits of garden work, buying food and trying to keep on top of the house. My DSis is ace but neither of us are really nearby so add in travel time. Our brother talks the talk and admonishes us for not doing enough when in reality he doesn’t really do much, especially when it comes to details of admin for things. To be honest I think the whole situation will break me as things are. But Dm really doesn’t seem to care. As long as she is getting attention - she doesn’t care what kind it is. We literally have no one as she has alienated family, friends neighbours - and that is over her whole life not just recently.

You know Blue. The negativity is awful. I just wouldnt put up with it from Mum. If she started complaining about something I would just say well that is how it is.

At least you have some Waitrose food. Better than nothing! If they still complain ready for a good old moaning session I would say something positive and then say sorry got to go now and put the phone down.

You are their listening post. It sounds like Mum wants YOU to do everything. You are her 'chosen person'. Lucky you. She wont agree to anyone else. Well guess what Mum - I have a choice. I will do things but any complaining and you are on your own. Yes, she will stamp her foot and behave like a toddler but has the world fallen in when a Waitrose delivery arrives or is it just a chance to be become a attention seeking nuisance?

All this complaining when your Father got CNC is not acceptable. What did you Mum do when she was working? The reason I am asking is that a lot of older women did very little work wise. I have a friends Mum who was a dinner lady and cannot stop complaining that she doenst feel she gets much after all those years paying into the system. She is now mid 80's and doesnt get it. Would rather go without than have a stranger doing something. So makes my friend run ragged dancing to her tune.

She has me of course (!!) to help and guide her and she is getting better and heading off at the pass. It is her choice to listen to minor rubbish. She doesnt need to call Mum every day and listen to 30 mins of health issues or gossip about neighbours. I have told her if there is a real emergency you will be found but all this minor stuff is a waste of everyone's time. It doesnt help the moaning person or indeed the person that has carried out the task so lets just agree to stop talking about noise and nonsense.