So bloody exhausted waiting for someone to die 2

My mum was diagnosed with parkinson's 12 years ago, left hand tremor, so mild/mid parkinson's. She would not comply with meds [don't blame her] she would not do her physio and as a recovering alcoholic she was keen on the liquid morphine [oramorph] so her health and mobility declined.
My mother was not a nice person who was bitter about life and she became very nasty and difficult. The demands and nastiness escalated, we put up with a lot because she said she was also diagnosed with dementia. Summer 2022 we were on our knees. Imagine my shock when dr's and her carers all confirmed she didn't have dementia it was for attention and only to immediate family.
My mother lived 10 years more than expected, every hospital stay we thought it was the end, it has broken the family, I went NC January last year as I couldn't take anymore, she died in November. We don't get that time back, my energy hasn't recovered, I still have anxiety from it. My husband had cancer during this time and I all I could do was put one foot in front of the other.
None of this is your fault and no gentle way of saying it @JellyWellyBoots your dad has had his life but expects you to sacrifice yours. If your dad refuses alternative care he can make other arrangements with your aunt. There is no good outcome here, if you have a mental breakdown everyone suffers, if your dad doesn't get his own way then it is just his sense of entitlement that gets dented.
I understand the devastating pressure of duty but in the end no one appreciates it, it is expected. Hindsight is 20/20

Re the time left a doctor friend explained that they tell you the timescale for 80% of patients with that diagnosis. Because people can get their head around 6-12 months etc. But if you gave them the timescale for even 95% you could be saying a month to 3 years and people struggle to cope with that.

@JellyWellyBoots lots of excellent advice given here.
You're obviously really clued up about what's what - is the block (to getting him into a care home/calling Social Services and saying 'That's it, now do something)- the guilt?
We all understand that.
Just two things:

Your words: You choose to have a child, so it's your job to look after them.
I didn't choose this.
Yes, yes, yes, yes, yes.

Secondly - to your unhelpful Aunt, and to him - 'Caring is a very hard job. That's why paid carers get days off. I don't get any days off, and I already have my own responsibilities. I'm not able to continue.

I can hardly believe I'm typing this, as I'm an animal lover/owner, but if he does need to stay, I would consider rehoming the dog. He'll go ballistic. But the poor thing will need to be rehomed anyway, and it might actually be helpful to start the process now - the dog could meet his new owners for visits, return to the security of your Dad - a gradual transition? I know someone who did this and it worked well.

@JellyWellyBoots I don’t know how it works in practice, but have you asked for a carer’s assessment? It’s an assessment of you and your needs. My 70 year old cousin has a profoundly disabled son living with him. For as long as I can remember, he has had access to a sitting service and regular respite periods, a set number of days which he divides between short periods when he wants a day out, and longer periods.

The problem with living under the cosh of “he has a year” is a prognosis is just a guess @JellyWellyBoots . It could be much longer. Also, as his condition deteriorates it’s going to get so much harder for you. You don’t have to live like this.

Where was he living before he moved in with you?

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.

It’s a form of masking I think. Putting on a front. Last time we saw FIL he was clearly making an effort to sit right up in bed, but he wasn’t talking or even really opening his eyes. Apparently he’s often quite angry and abusive but I only heard him bark at MIL to “shut up” once. He was on his best behaviour.

Oh god, the HEAT. Same here. He complains of feeling cold and demand the heating be cranked up, and god forbid anyone say no to him because the abuse would start again. I have to dress myself and the kids for summer if we visit, and occasionally go to an upstairs bedroom to throw a window open and stick my face out. It just adds to the oppressiveness of the house.

Hate to say it, but you just have to let "anything" happen. If you had gone away, he'd have miraculously found someone to help. Or something would have happened and so what, it would demonstrate the cracks and helped leverage more support. You can't carry on as you are - you're going to be ill yourself.

Mine (not terminally ill) also acts differently to other people compared to around me. I think it's like a child having their 'safe space' with a trusted parent so they act up with that parent. It's one thing when it's your child though, and another when it's an adult who can control their behaviour. I now either only see mine with other people present or have strong boundaries in place - she was really annoyed about this over Christmas when I refused to do several things she demanded!

@JellyWellyBoots yes I got ill, I seem to be seen as the strong one in the family so I kept having everything passed to me to deal with. I have an invisible illness (chronic) and I am supposed to manage stress and energy. The night DF was sectioned and taken to the MH unit everyone disappeared and hid in neighbours houses or went for a walk. So I was left alone to witness my DF being sectioned (after I'd called for help when he attacked us) and had to persuade him to go with them which was traumatic as he obviously didn't want to go and they said they would do it by force.

DF was same as yours he would commute fine with other people but with us he was awful, I have since been told this is perfectly normal as he sees them as authority so will behave better.

He has always been a very selfish person but he really didn't care how he treated us or how we were feeling, everything was about him and we wnt along with it to a certain degree and then he got more and more demanding. We had to do something for our own wellbeing as well as his.

What I expected was that once we called for help that things would be easier and to a certain degree they were but the admin, phone calls and meetings continued for about 8 months after he was sectioned. I would say its only been in the last couple months I've really felt I could breath and take some of my life back.

@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.

@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?

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.

@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?

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.

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.

@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.

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.

@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

@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

@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.

@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!

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

Physically and emotionally.

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.

@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.