So bloody exhausted waiting for someone to die...

[Poochypaws]

Nobody tells you how utterly draining, exhausting, depressing it is waiting for someone to die when the death has been 'expected' for years. Got told 4 years ago person might die as soon as 6 months but might be lucky and have a couple of years. Ok. Spent the next year spending every possible minute with them. Watched all their favourite movies with them. Listened to their favourite songs with them. Talked about loved ones and memories. Took them for lots of nice walks/outings. Basically put my own life on hold and compromised my own health to give them a nice 'ending'.

Except they didn't fucking die did they. So much for doctors predictions.

At first I was glad to have extra time. It felt like a gift. It felt like we had stuck two fingers up to death. As time has gone on though and the person needs everything done for them (EVERYTHING!) but still they linger on.

They go into hospital (about once every couple of months)- carers have to be cancelled, shopping has to be cancelled, perscription deliveries have to be cancelled, constant phone calls from hospital nurses ' can you bring this in, can you collect dirty washing, when are you visiting'

Then they are ready to come out of hospital. Carers have to be found and reinstated and everything else has to be put back in place.

Meanwhile having agreed to go into a carehome (social say person does now need 24 hour a day care) person has now told social they don't want to leave their own home.

Everyone around them (ok not everyone, just those involved) are on their knees with ill health, mental stress from the constant waiting, exhaustion from never knowing what is coming next and still the person keeps hanging on.

On about 30 tablets a day, requires washed, fed, dressed, help to leave house, taken to all appointments, all housework done, all admin done, entertained and you never know from one day to the next when the next fall or hospital visit, dentist emergency, optician emergency, will be. They are not like 'normal' people going to the dentist twice a year. They seem to need to go every month so their appointments are about 10 times those of a normal person. Constant infections, bleeding, bruising, swollen ankles, can't breathe, can't eat, can't sleep and still they go on.

Why god, why! I fear I might die first from the stress.

For those of you who have been asked by your gp or social or a nurse to 'help out with your parent' because they probably don't have long left anyway (ha, bloody ha) Think long and hard. Really long and hard. If fact don't think just turn the other way and run.

The NHS seems hell bent on keeping old sick people with no quality of life alive as long as possible even though the trail of destruction behind them far outweights the benefit of keeping them alive.

I used to see people at funerals and assume they were all sad. Of course people at funerals for young people will be sad. Now I realise for those who have elderly parents who have lingered and lingered and lingered they are not sad at the funerals they are RELIEVED. GLAD. Probably cracking open the bloody champagne in the evening.

For those of you who have never been in this position for years you have NO idea what you are talking about so don't bother commenting. (I had no idea before I did it and would have thought differently)

So tell me who is benefiting from this shitshow.
Old person - nope miserable, ill and poor quality of life
Anyone helping - nope, miserable, ill, poor quality of life
NHS/Social - resources being used HUGE, benefits ??

Finally in last few weeks I have taken a stand and withdrawn support. Literally had to shout at social and hospital nurses who seems to ignore the fact the 'carer' is having a nervous breakdown telling them to 'carry on what they are doing'. NO. NO. NO.

This will force a care home entry which is what is needed. NEVER AGAIN.

I get where you’re coming from op, and I understand how angry you are.
My Mum has dementia, she’s incontinent and can’t weight bare at all. She’s only 78.
She very suddenly was unable to stand. It happened 2yrs ago. She was taken into hospital, and was in there for 6 months. She nearly died twice.
I brought her home, and we had two carers four times per day…..it was’t enough. I had to cut my hours at work. I have a young dd and we were house bound.
Mum was taken back into hospital with a bowel obstruction. She was so sick and they said they wouldn’t operate because of her state. I agreed to this. She pulled through, and I had to refuse to have her home. I knew this would be the only way to get her into a nursing home. If I brought her home again, they wouldn’t have listened to me. I wasn’t coping at all.
The next fight was getting her into a home near me. It was a struggle, but I got her in.

She’s been there for the last year, and I hate it. They are always short staffed. I still have to fight for everything she needs. Most of the nurses and carers speak limited English, as they have been interviewed in different countries and flown over here. I feel guilty every time I visit ( usually about 5 times per week). She cries, and I don’t blame her. She gets hoisted and rolled around. She’s in pain. She’s confused. She’s miserable.
This nursing home is the best in the area. It has a good rating. I see how the residents are treated who don’t have reletives visiting often…. most are just left in bed on their own all day and ignored.

I often feel guilty for hoping and praying that she would pull through when she was so sick. She has no quality of life.

I love my Mum and I desperately want the best for her, but all she gets is mediocre ’care’ from people that are going through the motions and referring to her as a room number.

I hope you find some peace when your person is admitted to a home, but I’m sorry to say it has brought me nothing but more heartache.

The way elderly people are treated in this country is shocking. You get to 70 and you’re viewed as stupid and a nuisance. Carers are treat with no respect, and have no support. Carers are also financially abused.

I can’t agree with some of your comments. I don’t look forward to my Mum dying.
I can understand that you are at the end of your tether. That’s a very scary place to be, and I hope you can sort a placement soon. I also hope that will be a better situation that me and my lovely Mum have experienced 💐

Problem is your DM should have made these decisions with regard to antibiotics, do not resus etc
My D relative in a care home was rushed to hosp when they had a chest infection and pumped full of antibiotics.
Should have been left -instead rallied a bit and sent back to CH to free up a bed, we had the horrible restrict food and drink end of life ‘care’ about 3weeks later and this took over a week.

I completely understand the worries you have re this topic. I have them myself.

However regardless of whether my parent goes into a care home or not then YES I do still want them to die.

Why - because someone will still be feeding them mush which they can't eat anyway, someone will still be dressing and washing her and wiping her bum so she will still feel humilated. No doubt there will be lots of ill people there so I imagine lots of crying, screaming, general misery (have you ever been in an old folks home where they have lost their mental capacity?) My worry is it will be worse for her. Rather than safe in her own home I worry she may get attacked by a stronger male resident with dementia. I worry about abuse which unfortunately we all know happens. Having read about old ladies being raped in care homes I find them frightening places. I worry she will ring her buzzer and no-one will answer for ages (this seems to be quite common even in the 'good' care homes). I worry they will leave her in pain or in soiled clothes. The majority of people working in care homes I believe are 'good' or 'decent' people but they are overworked and frequently short staffed. I have read statements from people who actually work in care homes or have done and it is them that I have gotten alot of this info from. Yes they do their best but they don't have enough time to do anymore that the utter basics for each resident.

I would never ever want to go into a care home myself. It's not going to be an improvement in her life - it's going to be the same or worse. It will however improve MY life. So yes I still want her suffering to end.

we had the horrible restrict food and drink end of life ‘care’ about 3weeks later and this took over a week.

Is that even legal? Who authorised that? A gp? Or is that something the care home decided to do?

So many people have written such great responses. So much support I am genuinely overwhelmed. Thank you all. I wanted to reply to you all individually but there are too many of you. However please know I have read them all and your understanding and validation of my feelings have meant so much to me.
I'm sorry so many of us understand this issue so well. It is clearly going to be a big topic for the future

To the posters who have jumped to my defence against the posters who tried to kick me when I'm down, thank you. You have made me well up. I am not used to people defending me at the moment and have been astounded at how you have jumped to protect me. That means the world.

I have to give special mention to 'SoundtheSirens' for the funniest comment I've seen all day. Thank you. Your humour really made me smile.

thank you for your post.

When I first got told my mum was going to die soon I cried and cried and cried. I spent every moment with her. Even if she wanted to do something else (like go to age concern for a couple of hours) I would wait for her to get back. I'd literally sit in her house and wait for her. When the bus pulled up to her house I would go outside to greet her. I literally wanted to be with her all the time. I was devastated that she was going to leave me and didn't know how I would manage without her.

I don't want my mum to die but this is not my mum. She's been gone for a while. I've been grieving for a while. Now I'm just angry. I don't even know who at - god? NHS? My mum?
This is not my mum - this is just human suffering.

I'm so sorry about your mum and the carehome. This is what I fear will happen.
I appreciate you posting

just something else you mention at the end of you post that I want to have my parent 'killed'

No I don't.

Without all the medication they are on, prolonging their life, they would die very quickly indeed. They are past the end of their life.

I think there is a big difference in wanting to stop life prolonging treatment and allow death to happen to wanting someone 'killed'

Up to very recently my mum stated strongly she wanted to die in her own home and didn't want to go into a care home.

Combine this with doctor telling me 'it won't be long now, hang in there' meant I keep putting off any decisions for another month, another month, another month. It's just not as clear cut as your post makes it sound.

With respect OP I don't think euthanasia consists of simply stopping care, it's an act you carry out in order to end someone's life.

Obviously I don't know the specifics of your mum's condition but I would find stopping treatment and waiting for a painful death to be really inhumane if the death weren't imminent. There are two clear roads that you could theoretically take out of this and I appreciate that we're on different roads and that's absolutely fine.

I haven't criticised you or your situation and I honestly have so much sympathy for you, you are clearly struggling a lot which is awful. I truly wish you the best.

I'm so sorry, very very tough.

Sorry if for the sake of brevity I made it sound easy and simple. I have been in your situation unfortunately and do know it’s not, and that they will suggest all sorts of bits and pieces and devices to make things “easier”. For the sake of everyone (I was also caring for two other sick family members as well) I did what I described in my post. It felt very uncomfortable indeed. But without going into details which would breach confidentiality, the outcome was that the person moved very quickly into residential care even though they didn’t want to.

OP "Without all the medication they are on, prolonging their life, they would die very quickly indeed. They are past the end of their life."

Does the person know they could end their agony? I must admit, there was a point at which I was quite angry that dad wanted to squeeze out a few more weeks. With hindsight, I should have spent less time caring and being at his bedside. But there's a guilt isn't there.

thanks for posting. You sound like you are a very strong person.

You may have missed it (and I don't blame you as the thread has gotten quite large by now) but my mum has been very depressed now for last couple of years and wants to die. We have got her on antidepressants and she was just sobbing to anyone and everyone who came across her. She has threatened suicide several times and has had a community pychiatric nurse out several times. the last time they could not assess her as she can't stay awake for more than about 20 minutes at a time.

Its not just about me. Yes I can't cope anymore and that's one issue which I have dealt with by now withdrawing.

the other issue is my mum will now be put in a care home which she never wanted plus she will still be in pain/depressed/suffering/losing her dignity.

I wanted to give her the ending she wanted - in her own home, in her own bed.

I haven't managed it and now she will likely die in a care home which she said she did not want.

She also was very vocal about not wanting to lose her dignity. I wanted her to die before she did. Unfortunately that ship has long since sailed. Once the agency sent a male carer to my mums house to wash her and toilet her. My mum phoned the police screaming a strange man had appeared in her house. She frequently dosen't know who the carers are now but she is ok with the female ones but terrified of the male ones.

And that is another thing I think if she goes into a care home - male carers. My mum has a real fear of them.

Do I think my mum will be happy and pain free in the care home. Not at all. I think it will be just as bad for her just in a different way. MY life will be better as I won't be so burdened but HERS won't.

I hope that makes sense.

It's quite possible I am not making sense. Sorry about that.

I want all the suffering to end. For my mum that means death. I don't think she would need actively put down as her health is so bad. Stopping her tablets would almost certaintly result in her dying. Of course I would need her drugged up with all the painkillers/sedatives so it was painless and not scary. That's what I meant.

Even on a scary amount of tablets my mum can hardly breathe (lots of gasping, raspy sounds), can't stay awake hardly, is skin and bones, has swollen ankles despite maximum does of water tablets because her heart is knackered. She's bent double, falls frequently and gets infections every couple of weeks.

Without all the life saving measures she is currently getting she would likely die within about a week without anyone lifting a finger to euthanise her

At the moment we are waiting on a capacity assessment. If she is deemed not to have capacity her POA will kick in (that's me). At that point (based on what others have said here) I have the authority to tell them not to give her antibiotics etc (I had not realised any of this before I started this thread to be honest). I am now dreading having this option as I do not know if I have the strength to make active decisions like this. Thus I wish 'god' would do it for me.

Yes. 3 times they have had me make an appointment with their GP to talk about discontinuing their treatment. I got them to talk it over for ages with their best friend and she thought it was the right thing to do (which surprised me actually as I thought she would be horrified).
Each of the 3 times my mum decided she was too scared and got me to cancel it so I did.
She wants to die but is scared of it hurting. She says 'why can't I get a pill' to kill me. She has asked me to help her die but of course I told her I'm not allowed to.

She is too confused now anyway to be able to request this.

Poochy "At the moment we are waiting on a capacity assessment. If she is deemed not to have capacity her POA will kick in (that's me). At that point (based on what others have said here) I have the authority to tell them not to give her antibiotics etc (I had not realised any of this before I started this thread to be honest). I am now dreading having this option as I do not know if I have the strength to make active decisions like this. Thus I wish 'god' would do it for me."

but you can opt for comfort care so she suffers less, which I reckon will happen when she comes off meds. My late uncle was really ill with his meds the last couple of years of his life. He finally decided to come off them and had a much better three weeks or so, went out for a drink having been confined to the house. Then he had the heart attack he'd been trying to prevent and went peacefully. I think he wishes he made the decision earlier.

thank you for that info. I will have to read up on options available if she is deemed not to have capacity. I will remember to look at 'comfort care' and read all about it.

I hear you op, unmumsnetty hug from me.

I have a friend whose mum has been a “creaking gate” for years finally there is nothing more to be done and she’s receiving “palliative care” unfortunately this seems to be endless antibiotics propping her up with the seemingly endless amounts of infections she has.

My friend is at her beck and call, repeating to himself that when the time comes “he will have done everything he could” meanwhile he misses holidays, kids stuff at schools, his best friends wedding - it’s just bloody awful

@Poochypaws I had to call the vet out to my beloved soulmate first dog.

She was terminally ill with osteosarcoma- I was advised by chief vet about when to do it.

Vet came with an assistant-
vet said “ She looks well..vet spent several minutes stroking dog, who was on my bed.

The window was open for her spirit to depart
Vet drew up the turquoise liquid that would stop further suffering.

The passing was so gentle, I couldn’t tell when it happened, exactly.

A good death.

Why can’t we have that?

i have had barbiturate anaesthesia myself as a child ( dentist) for orthodontist work.

it comes on so fast, seconds.

Just soft darkness. Nothing to fear.

@mathanxiety exactly that!

As my FIL said about his lovely mother who was completely broken by Parkinsons, I'd be prosecuted if she was an animal and I kept her like this.

I have , I’m not going to tell everyone my business but I have done it all on my own and have been pushed to the limit, the difference is that I’m an adult and I do something about it
OP is not doing anything about it, just let it go on for years , doing the same thing and expecting different results and now she is broken down

her attitude is whats wrong towards this elderly person she cares for,
wishing that they would just die, and how old people are a burden and should be euthanised, it’s wrong
she has built up a lot of misplaced anger and resentment towards a vulnerable person and she needs to make other arrangements , should have done it years ago

if everyone in the thread is co-signing the OPs feelings, how is she going to improve her situation? She need to be told that her feelings are not healthy so she can get help
if a mother was feeling like this about a child, everyone would be telling her that her feelings and mindset are unhealthy and she needs social services
old people are very similar to children, once a man , twice a child is the saying

there are practical things that can help her financially,
like getting carers allowance if she isn’t already
why can’t they rent out the family home to pay for the care home costs

you are not the only one who Is going through this!
so if you can’t look after her , then find. Other. Options
I don’t know who you think you are deciding who is worthy to be alive and who is not
you think you are so hard done by, your struggle is not unique, I know many on mums net and in real life going through this
i have an elderly relative dying as well as other caring duties in my life
.
you are only hurting yourself, I have ALOT of experience being a carer to someone who will need me until I die and I hope I live long enough,
and like I said I go through what you go through and more but I would never wish death on someone that I love , I ask God to give me strength instead
I don’t like your attitude towards things so I won’t reply anymore because I don’t want to upset you further, but you’ve already admitted you can’t handle being a carer so please find alternatives 🙏

Maybe the person you are caring for isn't such a dementing cuss.
Maybe she or he isn't abusive, I do find your smug ''godly'' attitude sanctimonious.

''Oh, I hope I live long enough to care for him/her''...obviously that person isn't an aggressive cuss.

Euthanasia ?...OP's relative has wanted it, wants to ''Take a pill''

Your situation sounds entirely different.

There are some sweet natured ill people who are a dream to care for -

OP's relative isn't one of them.

Maybe YOU would like to care for OP's relative, see how long you'd last.

Typical Christian, full of smugness and self congratulatory behaviour.

seriously what the heck are you going on about?
You have clearly not read most of the thread.

My relative can go into a care home. She did not want to and wanted to die at home. I tried to help her do this even though it has not worked out. Nobody has stopped her going in if that's what she wants. She has £££ to do this.

My mum WANTS to die. She has told me this. She has told her friends this. She has told her agency carers this. She has told her GP this. Her life is pitiful, humiliating, painful. She wants me to help her die but of course I can't. So you are darn right I want her to die and I am bloody exhausted praying and waiting for it. Watching her die bit by bit like a horror show in slow motion. And yes I'm angry that the doctors got it so wrong. If I known it would go on so long I would have paced myself and done it differently.

What are these other options you talk of? Seriously what are they?
Nobody else (family wise) wanted to get involved. My mum did not want to go into a care home and wanted to die in her own home. So if you have lots of great ideas that me and everyone else on this thread don't know about then seriously I would love to hear them.

I am pretty sure you have never cared for an elderly person and are just trying to wind up me plus all the lovely people who have been so supportive.

I find it so completely strange that if your relative had an awful life and wanted it to end you would still want them to keep living (against their wishes and in pain). That is the opposite of love.

At least you gave me a laugh. According to you the problem with my mum is 'my attitude towards her'. If I can fix this all her medical problems will vanish and she will become healthy and happy again.

You haven't upset me. Not a bit. Your posts are far too ridiculous to have done that. You honestly sound like a troll.