So bloody exhausted waiting for someone to die 3

[StiffyByngsDogBartholomew]

Carrying on from our first two threads..
https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

Do you know what she meant by 'funeral'? I've been to a couple where the cremation took place in the morning with just a few family members present and then there was a service of thanksgiving in the afternoon.

No service.

Anyway, DH has gone through her paperwork, found nothing to explain further so is going with her expressed verbal wish of no funeral/service. Apparently this came about because she went through a phase of having a funeral every couple of weeks, as you can do when you get older, and it was after one of these that she first said she didn’t want one for herself.

He likes the idea of making a thing of scattering the ashes, particularly for DSS to enable him to say goodbye. He’ll talk to DSS to ask his thoughts - he’s a student so old enough, but also young enough that this is his first bereavement and it’s hit him quite hard. He’s spent a lot of time with MIL in school holidays when he was younger so was quite close to her.

We've just scattered my grandparents' ashes (over 30 years after their deaths, complicated farce). Siblings and cousins, a lot of black humour (tip, do check the wind direction), followed by a slap-up lunch drinking my grandmother's favourite cocktail. It was lovely, warm, funny and absolutely no stress.

@HoraceGoesBonkers sorry, this thread isn’t suitable for me but I noticed your post and really felt for you.

My dad died three years ago and his last year was pretty bad but nothing like you’re experiencing. But he was catheterised and was in and out of hospital. He died a few hours after being admitted and I felt grateful and relieved that he hadn’t had to spend weeks in there alone waiting to die. I didn’t cry much and my mum was annoyed with me about that.

I’m going through this situation at the moment. My mum (after 2 falls and 2 hospital stays) went into a NH about a month ago, and her decline is shocking. I live about 100 miles away, and my brother said I should see her last week to say goodbye. She’s hardly eating or drinking and sleeps all the time. No conversation. The NH staff have been saying that the end is not far away (I hope for her sake it is - she wants to go) and mentally I’ve been preparing myself for THE phone call any day or in the middle of the night, but today when I called for an update, another staff member seemed to think the end was a few weeks away, not imminent. I’d been given the impression it was ‘days’ so now I don’t know what to think. It’s a horrible kind of limbo.

@RosaMoline I'm.sorry your going through it too, my DF has been close to the end and then ralies again. I was told Christmas before last to get to the hospital quick hes fading and when I drove the 150 miles (in snow) to get there he was sat up in bed and being really abusive to us all (again). I would prefer it to be over for him but he seems ok right now although one of the staff in the NH told DM that in the 3 years he's worked there that there is only 1 resident that is still there from.when he started.

We had several "come now" calls over a 10 week period with MIL. We were on tenterhooks the whole time and flinched every time DHs phone rang. Which was awkward when he gets several calls from his customers every day.

Only just found this thread... Hello everyone...!!

I'm in limbo.. 90 something dad snoozing blisfully downstairs where I have another night of little sleep... I'm averaging less than 2 hours nightly so my watch helpfully tells Me.. Getting ready for another 15 hour day...

Hes recently been diagnosed with an agressive neuroendocrine cancer.. He's in no pain currently...hes very avoidant re anything to do with health /death... He wants to remain here regardless of impact it has on me and my partner... (my partner is here half the week...)

I've done what I swore I would never do and essentially have moved in with this elderly, bloody difficult father... I live (nominally) a 5 hour round trip away.. And we were having continiual calls from lovely neighbours as he'd been badgering them constantly... Despite us remonstrating with him... He's also had dealings with local violent criminal gangs who have fleeced him and comprehensively groomed him...

My health just couldn't withstand any more 'come now' calls... I can't work.. At a job I love..

My father has always been bloody awkward/oppositional..a psychologist I saw briefly said he was. A. Classic. Covert. Narcissist.... So that's fun... Not...

I feel less imprisoned living here than living away... It's still shit though and he tries to treat me as a personal slave... Anytime I tell him no.. He has a meltdown... I need a different spoon, this one is the wrong handle..!!

My own health is shot to pieces....load of orthopedic stuff which is worse as he declines.. The stress it utterly overwhelming... I have precancer, diabetes, chronic and neurpathic pain and a low level heart condition.

He has outlived my lovely mum by almost a decade and a half... No one predicted he'd live this long....

He refuses respite care... I've explicitly told him many times I need a break...

He knows best... About everything...

PS we are a small family... Only me... Sibling died suddenly in their 40s a few years back...

I'm seriously wondering how much more I can take with my mental and physical health...

I'm so sorry. I'd seriously be considering leaving him to it. Pack up, go home, inform his GP and SS and block the neighbours on your phone. This is your life.

I really feel for you. My situation is similar, looking after very elderly DM with terminal bowel cancer. Luckily, I live fairly close but have moved in with her since she came out of hospital a year ago as her mobility is poor and she is now quite weak. Generally she isn’t too bad to care for but can be very stubborn and doesn’t seem to realise how much of a toll it is taking on me. I have various health conditions too plus I get to spend very little time with my DH and the rest of my family. I’ve missed so much of a grandchild’s first year as they live a distance away and I can’t leave my mother to go and visit them. I’ve had to wait until they have had chance to come to see us, I would have liked to be able to help them with some childcare as I’ve previously done with my other GC. I have 2 older brothers, neither of whom have offered any help and I’ve been astounded how people who I thought were longtime friends of my mother haven’t bothered to call or visit her. It’s such a lonely life and I’m tired and depressed. I’ve said to the district nurse that I think I’ll die before my DM, she just laughed at me but to be honest, I wouldn’t care if I did

@IamtheDevilsAvocado
Can't you just go home?
It's not like he'll be able to stop you.

And then don't answer the neighbours' calls.

He has no right to hold you to ransom like this.

@IamtheDevilsAvocado
Seriously, go home. It's a frequent saying on here that you have to put your own oxygen mask on first before being able to assist others. And you're not going to be able to assist anyone at all if you've burnt out and your own health worsens - in which case it'll be down to SS anyway.

It's not your responsibility if the neighbours get involved. They have the choice. You could warn them in advance that you're burning out and will be taking a break, and suggest they call SS if your dad does ring them. Provide them with the number!

Then go home, limit the calls you take.

You do not have to do all this. You've taken on a huge amount. Yes, there probably will be a crisis but it's usually a crisis that makes other stuff then happen.

Good luck!

How sad reading these and other stories. Nearly 18 months on from the death of my mother at 97, I am now old. I feel old. Lots of health issues, weight gain, depression, grief all mixed up together.
Its too late now, the damage is done. Think of yourselves in all this.

@IamtheDevilsAvocado As other posters have said you really do
need to go home and return to the job you love. No one can force you to be a carer but health and social care will be more than happy for you to continue. As you’re Dad is terminally ill he would be entitled to funded care at home or even hospice care.

@IamtheDevilsAvocado really feel for you. The stress is unreal and if someone hasn’t been through it they have no idea. So many people just think oh how lovely you still have your parent, when you are absolutely on your knees

Yup... This a million times...!

This morning the agency carer who gets him up...was over an hour late. I refuse (on the surface to do intimate care... But I just can't leave him covered in poo and wee.. 😔). The agency carers are on the whole decent, compassionate people, but the admin /billing is laughably bad.

Dad has had a Uti + chest infection.. So his incontinence is worse than usual.

He was very distressed as he'd been in bed best part of 12 hours... And he wet through his pad/Kylie sheet /throwable draw sheet down to waterproof cover... His quilt was also sodden (have an internal waterproof cover.)... Deep joy...

So for second time in 2 days u had to do full bed change.. This is pretty agonising as I have shoulder probs after I broke it...

Then had to take him to dentist as his teeth need adjusting so he can eat🙄...it takes ages getting him on and out of the dentists.. He can walk with stick but very unsteady. Then to pharmacy to queue for 30mons for his meds... Then I come back to hang out washing load no 3 from this morning...

It is now almost 5pm...ive shoved some food down my throat... In between the 3 meals I've prepped for him, and mopped the bathroom for the third time today😲,and today I've remembered to take my meds... 😁... So today I've done zero stuff for myself and barely sat down...

This evening I must do Lidl run to pick up the stuff I was too exhausted to get yesterday...

And rinse and repeat....

Utter relentless tedium...

As you say @Donkeysdontdance folk have zero idea... 🤣🤣

I've had people say... 'at least he's still here...' (but I'm fucking not... I'm a shadow of myself)... 🙄... No way will I live to my 90s...

'It's an honour to be able to care for a parent.' ha ha... .. If you think that... Please come and watch me for a day... 😬😳😏... All the meltdowns and the nth load of washing I'm trying to dry, and the nth meal I've prepared that he decides he doesn't want 45 mins after requesting it. .. After I've shopped and cooked for it🙄... And the sodding continual cleaning.... 🤢

And my favourite... 'It's nice you don't have to work..'... Ha ha... What sodding planet do you live on...?? Yesterday started at 3am(a phone call at 3am... 'I think I've fallen out of bed.' .. He hadn't..)and crawled into bed at 11pm...

'It must be nice to have all the free time now you're living with your dad on the coast'.. I didn't punch this person.... But was so, so, tempted.... 🤣🤣.

@IamtheDevilsAvocado

Have you considered that it's time he was in a nursing home?

Hourly... 😂... But he point plank refused...

He has capacity... Sometimes... He's announced he wants to die, at home, in his bed...

Also he would run out of money very quickly at the 1500£ Pw they charge locally... We're in the south

I have explored local places... Some you wouldn't keep a rabbit in... Some are rated badly by cqc...

None of those reasons are valid.

He needs a care assessment.

And the cheapest nursing homes are sometimes the best.

@IamtheDevilsAvocado I feel such solidarity with you - from the washing every layer of bedding, to the refusal to eat what was asked for, to the queueing at the pharmacy. Plus the eye watering care home fees and financial dilemma so carers patchwork feels like the only option.
If your DF’s diagnosis is less than 6 months, you could potentially get an NHS funded care home.
It might be worth talking to Beacon.
In the meantime, vent away.
But also start to dig your way out.

https://beaconchc.co.uk/how-we-can-help/free-information-and-advice-on-nhs-continuing-healthcare/
We don’t have a terminal diagnosis (we’re just on first name terms with paramedics), so less hope for us but in case it is worth you knowing this is out there.

Ugh. My mum, who is really hard work (she never really seems to understand that other people have different emotional reactions to her) sent me a picture of my Dad out the blue yesterday with some other relatives, who are all smiling at the camera.

Dad is head down, slumped in his seat and looks dead tbh. It's not the sort of photo you really want to receive and I know Dad would have been mortified if he knew what was going on.

This feels like it's gone on forever now and with no end in sight!

@AmethystSparkles Thank you. I think I'll be relieved when he does die tbh, although I have heard it finally lets you grieve the person your relative once was. And yep, I can totally see my Mum being upset if her kids are not all suitably wailing and tearing out our hair.

I should have put this in my earlier post but my sister has found another lump and is waiting for another scan. It's difficult as if she tells DM then DM will use the opportunity to make a drama, but then, we're currently stuck with her doing stuff like sending awful photos of Dad which isn't particularly helpful either.