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.

Only just seen this thread after a huge row with DM last night (90, housebound, increasingly confused but refuses carers) and it's helped me feel not so alone in my terrible feelings. We've been told to prepare for her death many times but still she rises. I've had cancer recently (possibly contributed to by the stress of caring for DPs) and my business is a mess, my brother is absolutely hopeless and does nothing except complain how ill he is, yet she refuses to get any other help, so I wish this would end. Thanks for starting the thread and sorry to everyone going through it, it's hell.

@SierraSapphire . Much solidarity. What really gets to me is other people saying isn’t your mum doing well for 90. She might be but I’m not

Yes @Thestartofsomethinggood or "Aw, you'll miss her once she's gone", or the constant, "How's your mum?" rather than, "How are you?" In fact I had that conversation with my DM with her saying "I'm coping okay" and me saying "Well I'm not" but it's like she just doesn't hear it.

I am absolutely with you. I adore my mum. Absolutely adore her. Can't bear the thought of all this being over. But also can't bear the thought of all this continuing for much longer. For her sake- but also, frankly, for mine. My DP & I are exhausted.

@StiffyByngsDogBartholomew It's not as clear cut as that, though. Last time DF had antibiotics, it wasn’t so much to stop him dying, it was to keep him free from pain. Left uncontrolled, the infection might have killed him or might not; either way he would have suffered a lot

@Poochypaws, my best friends Dad needed everything done for him and he had dementia too. But he had physical issues as well as mental. Hospital gave him 6 months to live with cancer. His wife was run ragged caring for him and my friend used to care for him every Saturday to give her Mum a brief break. She got a phone call at work to say her parent had passed away. It wasn't her Dad it was her Mum. All the stress and strain and general worry about caring for her DH gave her a massive heart attack and she died at home and her DH didn't call an ambulance because of his dementia. Her Dad managed to go on another 2 years despite having stage 4 cancer that had spread to his bones.

Oh I hear you. If I hear one more ‘isn’t that amazing’ or ‘doesn’t she do so well’ I’ll actually scream. ‘You’ll miss her when she’s gone’ sorry but she’s been ‘gone’ a long time ago. I miss what she once was. But no I’ll not miss watching her increasing debility with no dignity whatsoever and all the other hellish bits. Big hugs to you @SierraSapphire and welcome. This thread has absolutely saved my sanity these last few weeks.

Hear, hear.
This thread has kept me functioning.

It's also prompted me to reflect on my own conversations. Previously I was one of those people who would start conversations with a 'How's your mum?'

I know those people mean well. But now I'm in it, I know how it makes me feel. Like a functionary who exists only for my mum's needs. The thing is, if I keep ignoring mine, she won't have any one. I missed another counselling session yesterday because mum needed help. I wouldn't have left her helpless. But behind her apparent strength is a crumbling daughter.

anyone
Grammar is disintegrating alongside sanity

I missed another counselling session yesterday because mum needed help.

I’m sure your counsellor would be pointing out the concept of “putting your own oxygen mask on first”. Gently, was it an emergency with your mum (life or death) or could it have waited until after your extremely important appointment?

I always feel that way when women have babies. People always ask how the baby is doing blah blah but rarely do you hear them ask "how are you doing?". As you so eloquently put it, the woman is a functionary, cast aside in favour of the baby.

so I try to even it out by ignoring the baby and fussing over the Mum 😂

That's a very good point, @StiffyByngsDogBartholomew .
The experience of caring for my mother is challenging my assumptions about so many aspects of everyday conversation.

@funnelfan, you're absolutely right - it wasn't an emergency, and I ought to have prioritized my counselling session, for my own sake and my mother's.

I think what's happening is that over time, all of my executive function - including my ability to step back and prioritize - is becoming blunted. The old @popular would have been able to take a step back. But now, I'm too exhausted to think.

I’m sorry @popularinthe80s, that’s sounds as if you’re in permanent react mode which must be exhausting. I hope you find a way through and the counselling helps.

It’s one of those things that, once you start noticing it, you can’t stop: women are seen as support humans for everyone in their lives.

Thank you, @funnelfan .

You put it perfectly, @Jellycats4life

Absolutely this. Had to cancel a recent appt (like hen's teeth) with a MH counsellor myself (depression, anxiety) as the schools were on strike that day. Alternative was to leave the kids for two hours and if anything had happened. I'd have been to blame. If I can't make the next one, they'll discharge me. It's shit.

Oh, @AInightingale, that's rubbish. It's so, so hard, isn't it.
The reason we need the support (we are scrapped out) is also the reason it's so hard to stick to our good intentions.

Just want to say you are all fecking awesome! Awesome! Brilliant, wonderful humans! Here’s tae us, wha’s like us! An old Rabbie Burns quote that seems particularly apt here.

When I was visiting my dying mum in hospital, I noticed that all the patients were women... because men usually die first, and all of the visitors were women my age, because daughters.
Men escape so much.

God I am so pleased to have found this thread. I feel a sense of relief that there are others expressing exactly what I feel.

My mum is in a hospice. I got a call from hospice at the weekend that she was hours from death. Her body wasn't tolerating the morphine it turns out and they gave her several narcan injections. She jerked out of bed, fell and hit her head. I travelled all day to be by her side and was furious to hear of the narcan. They kept saying "we have to reverse the reversible". This is a situation where my mum is frail, can't eat anything but clear liquids, is a shell of a person, cannot walk or do anything for herself. Drifting off on a high dose of morphine is the best death she could hope for. But no.
She's rallied - feels she has "weeks" in her. I don't feel like I have weeks in me. Like others have shared, every time there's a false alarm and i go into emergency mode, it takes me at least a week to find normality again and then it's with this heavy, tar black burden over EVERYTHING. The prospect of this going on for months even terrifies me. I have an elderly frail father who can't cope with this and no siblings for support. I'm beyond sad about Xmas. Divorced with young children and they're going to their dads for Xmas lunch. Everything is BLACK. Still people ask me to look after their kids and feel fine telling me about their wonderful huge families and all the parties they are going to.

@Lollywillowes that sounds really bad. I know exactly how you feel as just experienced very poor hospice care with DM who was in agony at the end but they wouldn’t increase the dose because “we must do more good than harm”.

It didn’t matter that DM ended up going downhill incredibly fast due to immense pain.

What better at that point to just drift off on a loaded syringe.

There was nothing left to be conscious for at this point but no, instead of sedating and increasing they just left her waking every hour to plead for more drugs. The nurses were lovely it was the doctors I have a ruck with.

Lolly do take care of yourself. I’ve paid a very high price with my health.

It tears you apart. But you must find joy in something. Something to keep you going. I’m sorry you are going through this. It’s shit but one day it will end.

@Lollywillowes keep going and posting here. You’ve a lot going on aside from caring responsibilities. Please take time for yourself to do at least one thing for you that is based solely on increasing your personal happiness this Christmas. Tell other people to FO looking after their kids amidst all of this and why. Absolutely no one has any idea what it is like dealing with SS, the care system, hospices, hospitals, ambulances, dementia, care homes, pharmacies, GP’s and elderly relatives who refuse to help themselves (and by definition, you) until they get to experience it all - and the opinion of anyone who hasn’t been through it doesn’t count. It isn't ‘popping in’ to check on Mum/Dad etc, it’s running another house, a FT job’s worth of admin/red tape and trying not to lose your shit or your own sanity every five minutes. It’s having to decline (rare because you are no company) invitations because the minute you have a glass of wine, someone falls over/gets admitted to hospital/carers don’t show up/the heating fails etc etc.

I watched an elderly man in the bank queue ahead of me the other day looking terrified because his wallet had been ‘stolen’. He couldn’t really walk properly and couldn’t tell the staff his own name. I know I’m not an arsehole because I couldn’t stand by and just watch so I stepped in to help, directed the staff to try and help him and to call maybe his emergency contact in his phone. I thought at the end of that phone is probably someone like one of us, exhausted that Dad has left the house again having promised he wouldn’t. But he absolutely should not have been out alone and vulnerable. And I expect that during that man’s working life he probably expected that the system he had paid into all his working life would be there for him when he needed it. It absolutely isn’t and the sooner the people who make decisions about the care of the elderly in this country wake up to address the absolute shit show it is, the better. Fuck the small boats nonsense and Fuck trying to prevent much needed carers coming over to this country with their families.

To everyone still buggering on, keep going. I am still angry/traumatised (and I am not being dramatic in using that word) having been through it all, but I know there is light at the end of the Tunnel.

Like others have shared, every time there's a false alarm and i go into emergency mode, it takes me at least a week to find normality again and then it's with this heavy, tar black burden over EVERYTHING

@Lollywillowes This is how I feel, and actually for every A&E trip to hospital it's probably more like two weeks it takes for me to regain my equilibrium, obviously depending on the severity of it. A consultant told me that my cancer probably started at exactly the time of the highest stress with my parents, coincidence or cause, I'll never know. My mum doesn't have a terrible quality of life, despite being housebound, so I can't really wish her dead yet although were four or five times that I thought she was actually dying or was going to die in hospital, but it's the unpredictability of it all that you describe @Iidentifyasweirdbarbie that constantly hangs over me, and makes planning anything feel precarious and not a joy.

After my row with my mum on Wednesday neither of us have contacted the other, I will probably pop round today as I usually do on Saturdays, I'm trying to work out what to say without actually apologising to her for me getting upset although she will think that I'm in the wrong. It's my brother I'm pissed off with as well for doing fuck all and constantly moaning about his problems which then worries my mum and then comes back to me, but he also has no self awareness and confronting him will probably just make things worse.

@Lollywillowes I couldn't have put it better myself, I always heard others complaining about SS but my god when you have to deal with it yourself it's an eye opener. I havecto be fair the first SW we had when DF got sectioned was a godsend, i can't praise him enough. He had to hand over to another SW and she was absolutely useless! A lot of my stress was caused by her incompetence and I spent months trying to get a new SW in the end I managed when she failed to show for a meeting at MH unit where her boss was in attendance. My health has deteriorated this year I have a chronic illness and its affected by stress, this past year when I look back I don't know how I've got through it, it's been hell.

I know the new year is just a new date really but I will start with a new attitude of "me first" because I can't do this for years DM kind of stepped back and left everything on my shoulders and I have started saying no you can sort that (wouldn't even arrange her own furniture delivery date) I can't be responsible for everything.

DB does absolutely f all to help, just makes promises then let's DM down and she still defends him, yet expects so much from me. I don't know how much longer DF will go on but I hope it ends for him and us soon, now he can't speak he just nods.

Last year I drove 130 miles in snow with DH as DF was in hospital and we were told he was dying, I got there he was sat up in bed being his usual nasty self and when I asked him to stop I'd driven all that way in the snow he said "oh poor you" he was verbally and physically aggressive in front of nursing staff but he was deemed fit to be home. SS pressed DM into giving him back with no care package.

Christmas was miserable we spent the day in uncomfortable silence in between bouts of abuse or DF standing up (with zimmer) and peeing in front of us. Boxing day DM called me and said she wanted to die, couldn't do this anymore and went missing. An amazing lady found her took her in and called me. In meantime DF was searching a neighbours home after walking in just wearing pants and a dressing gown demanding to know where DM was hiding.

This year DF is in a care home after being discharged from MH unit, I got so tired of people telling me the dementia made him nasty, he has always been a selfish bully it's just he hid it from the world but behind closed doors he made life hell for us.

I don't care what happens this year we will have an amazing Christmas I have gone all out to make sure of it I just want to end the year with some happiness