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.

Oh the smell of the parents house! Gosh it's so powerful. Thankfully I sold my dads house last year so it's a fading memory but it was a wall of 1970's staleness and several remnants of dogs that had all lived and died there over decades, plus microwave meals and disgusting carpets.

🤢

Does anyone else whose relative is in a care home get this as an opener for their calls...

'Hi, it's the care home, don't worry there's nothing to worry about!'

Which means there is something to worry about. Cos the situation is just continuing on, and on, and on and on.....

😩😢

Hi. I thought it was only me that had to change their ringtone. I’ve used that many I’m running out. The feeling of dread when I get in the car to mums is unreal, unbelievable to think you’d feel like that when visiting someone you love.
Today when I walked in mum was in the kitchen with a hot cup of tea in her hand, she said to take it, she was too dizzy and couldn’t move! 92 and refusing a care home.
I stayed for 45 mins as usual, listened and nodded, hopefully in the right places, got up to leave and was shouted at for not staying long and to just go because I never visit anyway.
The 30 min journey home is nearly as bad because I feel so guilty. I put some music on, and sing along very loudly to try and drown my thoughts. And on it goes.

I totally get this! Totally!!

Yes all the time. In fact I get the rage when they say it because it means relative is still alive when every call I get I hope it's 'the one' (to say they have gone).

@Poochypaws my dad is currently on his death bed, I've been waiting for weeks and weeks and I'm the one who usually calls them for updates. But they called today...

'Nothing to worry about! Just letting you know the GP saw your dad and there's been no change'.

Arrghhh. Actually that's another day and another day and another day to worry about. And no doubt another few days or even weeks after that.

😩

I don't want my memories of my mum being these last few years.

THIS.

Totally ruined our relationship. I used to phone her all the time for a chat, visit all the time just to chat, confided in her, relied on her blah blah blah. (I did same for her too, not just one way).

Now I don't like her and feel like I never want to see her again. For what she has put me through I might even hate her. And worst of it - she has no idea what my problem is or what she has put me through.

As I said - relationship ruined. I can't even remember what my mum used to be like.

And I bet when they called your heart stopped for just one second as you thought this was it. Then they tell you 'nothing to worry about' and you could scream, smash things and pound your fists in frustration (and probably fright too).

Someone said it's like living on a knife edge and it really is.

very familiar - getting told you don't stay long enough, you don't come very often, you never do anything for them, they may as well be dead for all you care blah de blah.

Nothing like a good dose of guilt when you are already resentful, angry, depressed etc

We used to get that from FIL even the week after DH spent 3 days taking him to for cancer treatment that was 5 hours driving plus time at the hospital and faffing about before and after.

@Poochypaws

A knife edge- exactly this. I've been sitting waiting for over two weeks now when I was told it would be 'days'. It's such a rollercoaster, he's up, he's down, he's all over the place. I just need it to end now.

I've had 17 years of chasing after / looking after / running about all over the place for two ill parents and frankly, I'm done.

The reason people put on weight doing this is a combination of comfort eating and not having time to look after yourself. Some of us arent into drink and drugs and you need to be alert as a carer. Caitlin Moran wrote a good piece on it.

And the thanks we get? Moaned and griped at and treated as "lesser" for being overweight including by some in the NHS who moan that families arent doing enough.

Sometimes I think about the bigger picture of our NHS/health system.

There are so many areas that would benefit from extra money.

More ambulances because lets be honest the 4 hour wait thing is just scary. Imagine you live on your own and you're having a heart attack. There's nobody to drive you to hospital but the wait time is 4 hours. Never thought I'd see the day when 999 didn't mean attention right away. (I've never called 999 for myself but you know what I mean)

Lower waiting times for operations or to see a consultant. Lots of people living in chronic pain and needing an operation that could improve the quality of their life greatly.

Able to get an NHS dentist cos that's becoming an impossibility. It's well known that health of your teeth/mouth affects your heart health and other things so it's actually quite crucial to look after your dental needs

Able to get a GP appointment - something once done so easily now so difficult.
I mean this is the first stop for our health - how can we not get a GP appointment anymore (HINT - my relative has probably had your share, my share and most people on here's share of GP appointments)

Instead we are spending BILLIONS keeping old, sick, demented, frail people alive.

Isn't this just a terrible mismanagement of the limited resources the NHS has?

I mean we aren't saving a person - we are saving an person AT THE EXPENSE of another person. Our NHS does not have enough money to fund everything well so it has to chose where the money can make the biggest difference. It is not doing this though. It's spending a huge amount of the elderly at the cost of everything else.

no wonder we are all so fucking angry and resentful.

I mean why are these old fuckers so arrogant and selfish. What happened to "thank you son for spending your entire week driving me to the hospital. I know it's been a huge inconvenience but I do appreciate it"

Ive been trying since MAY to get an appointment with GP to discuss my digestive issues which seem to be linked to the menopause and its time for HRT.

It's pure frustration and lack of control of something that is affecting you so much.

You're pent up with emotion and completely at the mercy of someone else.

Very bad for your health

That is awful. I know my mum's GP was utterly sick of her constantly being up at the surgery all the time. Often complaining about the same things that there was no cure for.

If he didn't give her an appointment she would call an ambulance and tell them she had 'chest pain' as that always got her an ambulance right away. Even if she was just lonely she would do this. Her GP banned her from calling ambulances.

How she was not blacklisted for being a time waster I do not know.

My GP once told me to 'try to get her in a carehome' as he clearly wanted her off his books as she took up so much of his time.

If he didn't give her an appointment though she called an ambulance and then the ambulance crews were annoyed at the GP so he couldn't win.

I took her to doctors 3 times because she was 'depressed'. Each time she would wail and cry at the doctors causing a huge scene. The doctor would give her a perscription for antidepressants. First time she refused to take them. Second time she took them for 3 days said they made her feel sick and refused to take them any more. Third time she took them but only because they got put in her pill box so she was taking them without realising (GP actions not me).

So when you wonder why you can't get a GP appointment anymore ...................

:(

I’ve put weight on too and my cholesterol is up and I already take bp tablets, whatever next.
I seem to have lost all my self control, all I want is a coffee and cake when I come home from visiting, then I can’t be bothered to cook either. Mum got her blood results today all fine.
It’s good to talk, all these things we feel but can’t tell anyone else because they have no idea what it feels like, my family sympathise but don’t understand the monotony of it all, the mental health toll is awful I don’t mention mum now, and they’ve mostly stopped asking.
Feel so sorry for everyone on here. Hope we all find the strength somehow to do what we can , but look after ourselves too, because we matter.

Now that I am having some time to myself and getting some perspective I am just horrified that not one person asked me if I was okay.

I mean my mum is getting attention for every medical thing possible. Taken to dentist, doctors, opticians, nails cut, washed, fed, entertained. Taken to the hairdressers, clothes shops. She would always have some nice outfit on, her makeup, her perfume etc. Her house was cleaned and maintained.

Meanwhile her daughter is mobidly obese, on a high does of antidepressants, only showering every 3 days as so exhausted. Gets hair cut once a year and clearly is just as ill if not more ill than mother in a different way. Dressed in very scruffy clothes, dirty shoes, teeth neglected, no make up, pale and tired yet not one doctor, nurse, social worker, asked if I was okay. Probably too scared to. I must have been a flashing beacon for a person heading for a breakdown. Yet they all continued to lavish their attention on my mum. Partly I think because she was always screaming for attention or complaining and I was silent.

Morale of the story - if you don't look after yourself ,others will let you kill yourself slowly but surely. We must have looked a ridiculas pair - me pushing her wheelchair while she sat there groomed, dressed well, jewellery on with me at the back looking like a homeless person.

It didn't all happen at once. First you stop wearing makeup because well you are only going to appointments and old people things anyway. Then you stop getting your hair cut or dying your roots. Then you don't bother polishing your shoes so they look scruffy. Then when your clothes start to have seen better days you don't bother buying new stuff because you are far too busy/ill to worry about such trivial matters. Then you stop washing your hair everyday and then stop showering every day. I mean you meant to take a shower but you thought you would just clean the shit of the floor first and then empty the comode and then one thing led to another and before you know it it is bedtime and you are too exhausted. Never mind having the mental energy to make yourself a dentist appointment or a smear test. A good day is when you have managed to shower yourself and brush your hair. The fatter you get, the more depressed you feel, the more people look at you with disgust, the more depressed you feel, the more you eat after all that's one thing she can't take from you.

Dare I say that you will miss them when they are gone

That’s a superb and heroic post Poochy.

Massive admiration for your writing genius through the struggle and love to you.

Thank you - I was wearing my 'Super Carer' cape when I wrote it although my elbows keep hitting off the phone box walls

I hope you are old enough to remember superman going into the telephone box to change or that post made no sense at all!!

I miss my 'old mum' already as she has already 'gone'.

This is not my mum.