So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

From my limited research, you're fine if you scatter ashes. However if you bury them in an urn, as my parents did with my GFs, then in order to move them you have to apply for an exhumation licence.

They died almost 40 years ago! What would you do? None of us were close to them (v posh, born at the turn of the century, right wing, racist etc). I'm annoyed at my father's selfishness to know that he needed to do something and then do nothing. We're having to wade through the bureaucracy and it might end up costing ££££s. I mean deathmin for your parents is bad enough, but for your parents' parents who died last century...

At the risk of sounding like a terrible person, I'm tempted to get an extra strong bin bag and go to the big refuse centre. I doubt Dad did the correct exhumation order when he moved them in the first place.

Would anyone know if you just dug them.up?

@Valleyofthedollymix can you not remove the stone plaque prior to any sale and just leave them buried? Are they likely to be discovered at any point? If the urn is just wood and ashes it will eventually decompose anyway.

Personally I would rather just leave them than knowingly break the law myself by digging them up.

Yes we could remove the big stone plaque although I'm not sure quite what to do with it. And you're probably right about not breaking the law, though I don't know where it stands if my father broke the law in the first place (which I bet he did). I'm wondering how many people have ever been charged with this particular offence. It's got tragi-comic potential.

Who knew?

But really, it's just more effing admin. That's all I do. It's so thankless and futile. Wasted hours with nothing to show for it. My mother once sniffily said 'well I suppose you visit' when we were trying to convey that we were looking after her and would continue to do so. Grrrr.

I saw the words 'caring is therapeutic' in big letters on the side of a car parked outside on my road this morning.

I almost choked on my anti depressant.

@JellyWellyBoots 😚

I think I've reached my limit.
Can't bring myself to leave the house, struggled to even take the dog for a walk. Eaten about 3 proper meals since Xmas day.
I'm hardly cooking, the house is a mess.

Contacted adult SS's & begged for help.
They are putting dad in respite for 2 weeks.

He thinks I'm kicking him out, his sister has been in contact saying he's unhappy with my decision & she wants me to delay the respite.

No one in the family is helping, yet I'm being made to feel guilty for needing a break.

I have a 6 year old who needs me, & a demanding job to return to on Tuesday.

I've totally fallen apart and it's only been 4 months. They want to bring him back after 2 weeks so I can continue care, I feel duty bound but i don't think I will cope. In fact I know I won't.

This is harder than the newborn stage, & that was fucking hard.
You choose to have a child, so it's your job to look after them.
I didn't choose this & I resent it. I'm angry, so fucking angry all the time.

I hate my life, absolutely hate it. I feel suffocated, Ill from stress.

@Tara336 This thing that any decision on best interests just rewound every time a patient moves setting or changes doctors (sometimes even if they change consultants/wards) in hospital drove me MAD with Mum.

They ignore how painful these discussions are to have, and the time and effort invested in the meeting. It's fucking awful. And it's not based on any reality. So what if Mum is 'brighter' this week, or 'enjoyed her meal'? She has a brain injury affecting her ability to initiate or stop action, if you stick a spoon forcefully enough on her lip she will open her mouth. Hat implies nothing about her feelings, nor more importantly whether trying to give her a full meal is in any way in her best interests. She can in fact refuse food but it takes SO much time for her to be able to shake her head, I understand that the carers don't have that time.

I don't know how to make it so that it's possible to revisit these plans based on real alterations in someone's interests, but to make it so they don't just tear up a care plan achieved with huge effort just because they feel like it.

Bloody hell @JellyWellyBoots. I'm normally quite a restrained type but is it time to unleash your pain on your aunt? Interfering external rellies are another nightmare. Maybe just ring her and say 'oh I understand you're offering to have Dad to live with you?' and if the answer is no to say that she should butt out.

@JellyWellyBoots you need to tell your aunt you have no objection to her taking over your dad's care.

Physically and emotionally.

I hope your respite becomes permanent rather than two weeks @JellyWellyBoots Once he’s there I’d start making it clear he can’t come back.

@JellyWellyBoots Stand your ground! Your priorities here absolutely have to be your young child.
If other family members want to take over care, well good luck to them…you’ll be no good to anyone if you soldier on and have a complete breakdown. You don't need a break, you need a permanent care placement so you can go back to being a daughter not a carer!

@JellyWellyBoots I can't imagine how desperate you must feel. It's not up to anyone else, it's your life. It's also not your dad's decision that you get to sacrifice yours and your child's life for him.
There was always an unspoken expectation in my family that I would be responsible for my parents. I moved abroad, best thing I ever did.

"That's very generous of you aunty Margaret to offer to look after him. When shall I bring him ?"

@JellyWellyBoots respite is exactly what you need, we tried to get that for DF but nowhere would accept him due to his behaviour (violence, incontinent and wouldnt wear pads) we understood why but my god it was hard as we were left wondering what to do next. Unfortunately dementia seems to make people selfish/unaware of what they are doing to everyone else so unless your aunt wants to help she can do one! Maybe a couple weeks of your life and struggles might help focus her mind! It's amazing how many families have those that don't he hard graft and those that cheer on and criticise from the sidelines

@PermanentTemporary ok so looks like I have to have another conversation about our wishes regarding DF end of life. We have been asked if we would like him to pass in the home or be taken to hospital but no discussions about treatment and what we do or do not want. Nit a nice discussion but I guess at least we already know what we want tk do its just advising someone else again

It's not dementia, it's cancer. He has a year left, I feel so incredibly guilty for feeling this way but a lot has happened in such a short space of time, we haven't adjusted well.

I've been left completely on my own to do absolutely everything.

@JellyWellyBoots you absolutely need to put yourself first, this is unsustainable.

I've been there twice, throwing every resource I had at supporting someone with terminal cancer. One was meant to die within a week, and took three. The other similar time and lasted several months longer, by which point I was beyond exhausted. It might be longer than a year for you, and you can't carry on like that anyway.

Could you refuse to have him back once the respite is over? They can't force you to be a carer, it's just easier for them if you are. I admit I'd be very tempted to hand SS your aunt's phone number and address and tell them she's taking over but that's probably not realistic. I would though, if she comes up with any more stupid comments, come back with asking for details of how she's going to help, which days/nights she's going to do etc.

I think I've carried on with it because no one else will have him, I feel so under appreciated. Every morning when I go downstairs he's up & ready to give me a list of things he needs to do which basically means I'll have to do it. Within 5 minutes all I want to do is crawl back into bed.

No one talks about the admin side of things either, the constant phone calls all day everyday. The emails, appointments, the finances, the paperwork, the funeral arrangements, the will. Sometimes while im at work I get a stream of calls and emails from the nurses or dad himself who needs me to pop into the shop on my way back.

He's bringing more and more stuff into the house, he's now on about having adaptations made to make life easier for him, I said I don't want people coming in and drilling holes in my walls.

He brought his dog here a few weeks ago, I wasn't going to deny a dying man his best friend, but honest to god im finding hair everywhere, hoovering every single day, I can't get rid of the smell no matter how much febreeze I use. It just doesn't smell like home anymore.

I got shouted at yesterday for not immediately leaving the house to pick up yet more prescribed medication, I see the pharmacy more than I see any of my friends.

He may be unwell but he's always been unreasonable, expects so much of me & gives very little back. If I dare point out he's left the toilet seat up for the millionth time it wasn't his fault or he has some excuse.

He's always complaining he's cold, i can't open any windows half the time to air out the smell.

I've given up on cleaning, I've always prided myself on having a clean and tidy house. It's near impossible to keep on top of it now.

My favourite time of day is bedtime, I just want to be asleep all the time as that's the only time my head doesn't feel like it's about to explode. Even trying to have a conversation is difficult because his hearing is so bad. Won't wear hearing aids because they are bad quality.
I lay in bed every night listening to constant coughing and clearing his throat, snoring, it's so damn LOUD.

The list is endless.

He just doesn't see the impact this has had on us, he's been telling people he 'didn't realise how much of a burden he was to me' & has made it clear he's not happy about going into respite because he's quite comfortable here.

It's ruining the last few months we have together, I don't want to remember it like this.

It's ruining the last few months we have together, I don't want to remember it like this.

Can you explain this to your aunt?
I mean you shouldn't have to but she's being so unreasonable to believe you ought to be doing all the caring with no respite.

@JellyWellyBoots reading what you've said I recognise so many things from last year with DF. I saw my best friend twice last year I just didn't have the time.

Family members looked at me like I was mad when I would say I've been on the phone all day but it's easily done when you are chasing people asking for help. I can remember when DF was sectioned it was like I'd been in this horrendous storm and then it suddenly passed and I felt numb and completely mentally and physically exhausted. I didn't touch my phone for ages as I was so sick of the damm thing.

The suffocating heat in the house as DF insisted it was cold but it was like a sauna we were wearing t shirts and df a big dressing gown, a throw and a hot water bottle.

I would deliberate leave the kitchen door open even for a few minutes to try and air the place and cool it down.

Are there McMillan nurses that could help? Or is it very much like we found with the Admiral Nurses and they phone occasionally and cheer you on but don't do much else?

What I remember from this time was that your life has to carry on afterwards. I should have prioritised my work and later on my child over the dying person but I didn't realise it would be so long and didn't think through the implications of doing so much.
Sadly no one is going to do this for you as it's easier for them if you do it. Is it possible to not be available whilst you're working, at least for some hours. Get the aunt to deal with phone calls, admin, getting prescriptions .

Also, book a holiday. Sounds crazy but you can't live like this without any kind of break to switch off from both work and caring.

@Tara336 Could you tell me more?
One thing I have noticed is he is completely different when company is around, but is more senile & deaf when it's just us. I don't understand it.

Did you become unwell in yourself? I certainly have, constant headaches, tiredness, body is so heavy. I'm angry 24/7. The ONLY thing that keeps me going and makes me smile is DD. She's been my saviour in all of this.

How do I tell him I can't do this anymore?

@EmotionalBlackmail I was due to go away for 3 nights with DD to visit my grandfather. No one would come and stay at the house with DF & he refused to go and stay with anyone. I ended up cancelling because I just didn't feel comfortable him being alone in my house. Anything could have happened.

So I never got the break I was so desperate for because he didn't want to impose on any of his friends. Ironic hey.