To feel trapped?

[LostMarblesAgain]

Sorry in advance for long post.
Background- I'm a mum of 3 under 10yrs, work full time outside the home, supportive DH + Dad to our kids, but with a stressful, 'always on' job and a boss who doesn't respect boundaries of home v work time. DH also struggles with his own health issues which are exacerbated by stress.
On top of this, my DF is terminally ill and since his diagnosis 4 yrs ago has lost every bit of independence. We (his family) have been providing 24hr care for over a year now, with carers popping in for mealtimes/bedtime prep in the last 6 months. DM passed away suddenly a few years ago, before DF was diagnosed.
In terms of DF's care, DSis insisted that everything would be done her way. No discussion was entertained with DB or myself. Nursing home care would not be considered - nor would anyone's opinion be sought. DSis and her DH moved in with DF and DB and I do what we can to help. DB and I each stay over 1 night per week and spend a day each looking after DH. DSis insists on doing all appointments & controls DFs finances (albeit poorly IMO).
DSis is now expecting her 1st child. I've tried to talk to her about arranging additional care for DF as pregnancy and newborn stage will be tough enough in itself. My attempts to discuss have ended in her bitterly attacking me personally and sneering at how little I do for DF in terms of hours I cover. Complaining that everything falls to her, but not allowing me to help in any reasonable sense. Then going NC to a point where for 3 months she ignored me every time when I arrived to take care of DF. No handover, no care for updating me on DFs medications or use of medical equipment (DF can no longer speak, walk, is doubly incontinent & struggles to swallow). DSis also goes NC with my kids and is very cool with them when they chat away to her (I bring them with me when taking care of DF in the afternoon time so they see her on handover).
So after another attempt to discuss a care plan for DF, and another round of personal abuse, during which I've been told to pay for cover for DF if I plan to go on holidays over the summer months, I'm finding it so tough to face into another round of being ignored or abused when I turn up to visit or take care of DF. As anyone with kids will know, it's not easy to juggle the dynamic on a normal day, but this situation is incredibly difficult. DSis is a great martyr and it's important that she's seen to be doing it all. However she gets out socially 3 nights per week and has been on more holidays and breaks than me in the past year. I don't begrudge her the breaks - I lean on DH and his parents to allow me cover extra hours so DSis can have these breaks. I've walked out on DH and kids when they've been sick to go take care of DF. I've looked after DF when I've been sick. I expect nothing in return but a little respect for doing the best that I can. I'm at the end of my rope now. My mental health is suffering and I'm struggling to buffer my own family from this stress. Feels like there's no way out :(

that sounds so stressful, I dont know how you cope with it all. I think you need to get outside help and support if only to deal with your Dsis.

Are you in contact with a group such as MacMillans, or Social Services?

We have all the health board funded help available. It's too soon for a palliative care team. Only options as I see it are either nursing home or paid private carers.
I talked to DSis about saving DFs pension for this eventuality but was met with accusations of coming in trying to interfere. I have no idea what funds DF has saved to pay for private care. I would be prepared to contribute to meeting any gap, but DSis won't even have the conversation.

Does your DSis pay herself any rent or carers pay from your father money? Is this why she is 'taking responsibility'?

I think a call to social services would be good just to ensure you are accessing everything available to you - and to have someone neutral to advise you.

I think your DSis is now struggling and with having a baby really needs some respite. Can your DF go in a home for a few weeks so everyone can have a break?

This will give you the opportunity to sit down and look at your fathers financial situation.

Lost sending you a hug and for both yours and your DFs situation.
How is the relationship between DSis and DB? Can DB help support a conversation in any way. If not would it be possible to ask everyone for a ‘family’ meeting to discuss care plan i.e. have others in the room to try and help your DSis feel the need to listen to you and others (my DSis is appalling in private but never in front of others as she too has to appear martyr/perfect).

No DSis doesn't take anything from DFs income, that I am aware of. DF did have a partner who acted as carer until recently. We learned that he was providing her with financial support which was cleaning him out. This stopped 6 months ago as far as I know.
DSis is still working so not entitled to any carers payments. Her job allows her to work from home a few days a week, so she's there for DF. We try to cover the other days. DSis will not acknowledge that we need to plan for her advancing pregnancy or arrival of new baby. She has made it clear that DF will not go to respite or into any residential care facility either long or short term. She views me as a terrible lazy person for even suggesting it.

That sounds absolutely awful. You can't be expected just to carry on like this at the risk to your own health and mental wellbeing. It's just too stressful. You could get in touch with Age UK and talk it over with somebody as the best way forward for your Dad's care. I think your sister is being totally unreasonable and controlling and wanting it all her own way.

From what you say he needs to be in a nursing home, never mind at home with carers. I'd personally not want to do all this caring with a family myself, not out of selfishness but theres only so much a person can cope with.
I'd say to Dsis that she needs to get carers in for your shift and the should come out of his benefits. He will be entitled to Attendance Allowance as well as his state pension.
He needs a full assessment of his entitlements so I'd ring social services and ask them to come out and talk to your sister as well.
Is Dsis taking all the responsibility and not placing him in care because she wants all the house?

Thank you Teatime. DB is great if directly asked to do something. He does not offer help or suggestions. He decided DF should be in a nursing home long before I would have considered it as an option, however he is not forthcoming in his opinion. His approach is to keep to his care hours & say nothing. He will not rock the boat by getting involved in any way.

DSis will inherit a larger percentage of DFs property when he passes, as DF wanted to acknowledge the help she provides. I'm not in a position to provide this level of care unfortunately, as my family depend on me and they need to be my priority.
When I tried to explain this, and the fact that I can't afford to give up work, it was thrown back at me as being an excuse rather than a reason for my limited care support.
I've been financially responsible for myself since I started working, so have no expectation of any inheritance, however DFs decision to recognise DSis in this way did sting.

so sorry to read this. This is the exact same situation I was in before both my parents died. Sister is a narcissist who tried to control everything. Mum and dad hated her in the end, but to everyone else she is amazing as she played the martyr.

As other posters have said, your Ddad should be fully assessed by both social services and NHS team. From the sounds of it he may be entitled to both social support and continuing healthcare (CHC, though this is a hard fought battle due to cuts).
Another consideration is that if you as a family are seeing to your Dad’s continence needs, is he happy with this? This is in now way meant as a criticism. Simply when I’ve known ‘consideration for dignity in care’ used when applying for funding for help or residential care.
Would you be able to hav3 a frank chat with DB making it clear you need to support each other?

*in no way

And your DF can chose who he pays his attendance allowance to, your DSis can still receive it even if in employment.

Wow I can’t believe her attitude towards you and her seething resentment!

So she is being given a higher percentage of the estate?

This is precisely why she won’t put your father in a nursing home because it will eat into her inheritance which is fair enough but why should she hate you for it?

With three children and a husband I really don’t know how you have got time to do a full day caring

I’d be surprised if she gave this home up. She will have rights to stay there too.

This sounds so difficult. Having recently had a terminally ill parent I really do feel for you. I wish you every strength.