Handhold please, difficult family and parents refusing support.

[jellyfish798]

First time poster so be kind please, feel v overwhelmed and would much appreciate handhold.
Parents have got to the stage where one needs full time care (dad) due to dementia, and many physical health needs. Mum has been primary carer for some time, done an amazing job, but now isn't coping. However, she consistently refuses help and is in denial. The way the wind is blowing I think she and other family members plan to put pressure on me to start providing respite care, probably staying at their home for a minimum of 1 week a month.
I don't feel able to do personal care or lifting and I think both will be needed. I'd be expected to hold down my full time wfh job alongside this and my college course.
Worried about the impact on my mental health, relationship, finances. I also have insomnia and am aware trying to do so many things on little sleep won't be good for me.
My partner is supportive but has said many times that we are only delaying the inevitable and carers will eventually be required. His mum had similar needs and he also tried to provide support alone for awhile, before eventually carers then nursing home needed.
I feel terribly low, pulled in all directions and unsure how much control I have over my life. Been awake most of the night worrying about the conversations which will be had today and what family will expect me to do.
Any advice appreciated xx

I’m really sorry to hear you are all dealing with this. Your poor dad, mum and partner!

You can’t live your life with so many unstated possibilities in the air.

I had relatives (my mum) it was incredibly difficult to talk to if she didn’t want to. My sister and I referred to the ‘force field’ around her. If she didn’t want to answer a question, she just wouldn’t.

My suggestion would be that you and your partner go over there, with a view to getting three things across - 1. That you’re worried about her and think she needs more support 2 that your dad needs more professional help 3 that you are not willing to try and plug this gap because professional help is the sustainable route.

Take a pincer action - if your mum goes quiet, keep talking to your partner and getting him to contribute.

You can’t force your mum to respond, but you can clearly state your views, and keep doing it.

You need to decide right now what you are prepared to do and, more importantly, not prepared to do. Then, regardless of the conversations and who you have them with, dig your heels in and stand your ground.

If you mother refuses any help or support then you need to walk away and let everything tip over - you’ll break trying to do everything, believe me.

Definitely bring your DP with you. DH has been my rock over the past year, without him I suspect I would have tried to do even more and ended up having a breakdown. My DPs take suggestions and boundaries from him much more than me.

Who else is involved in this and why do you think a week a month care is what they are angling for?

Your mum would expect you to provide regular respite care?! How would this be facilitated? What about your job? Your pension? This is hard to believe tbh. Surely she wouldn’t go through with letting you do it?!
Just say no. I’m afraid I would feel very differently about everyone going forward if this is a serious suggestion.
The needs of someone at the end of life don’t trump those of others in the prime of theirs. Quite the reverse.

First thing, is your mother claiming any benefits such as attendance allowance ? If so this could also lead to council tax being paid in full or a large part of it, freeing up cash to pay for carers.
You are going to have to stand firm on this , if your dad needs full time care how does your family think you can do it ? They are being unreasonable, it is not up to them to dictate what you do with your own busy life.
One week a month even if you were willing won't solve the problem .
My mother has an altzimers diagnosis but quite good at the moment ,she needs general help which was getting to be a chore quite frankly even with siblings helping, I am not a natural carer and the thought of personal care crosses a line for me, no one should have to do that unwillingly.
You are right to have the concerns about how it could impact your own life and it certainly would, plus unless someone needing care is terminally ill you have no idea how long this could go on for.
Unfortunately if your mother will not give in to carers who have so far proven to be a godsend for us then you will have to wait for some sort of crisis to occur which usually happens for your mother to give in.
You are going to feel guilt either way because that is the case for adult kids in these situations.
I think the pp who said go with your husband to talk to your mom is right.
Good luck , it's very hard but you must put yourself 1st caring is a full time job and you can't work 2 full time jobs at once - you'll need caring for !!!

Who are the other family members?

I think you need to point out all the flaws in the plan. That you’ll lose your job and fail your college placement.
That professional carers have skills and understanding that you don’t, and will be better at helping him access support and services.

Offer something you can manage- to help arrange carers, to stay one weekend a month, to organise a day centre for him to visit so she gets time off in the days.

And come up with plans that involve these ‘other family members’. If you do a weekend a month, and they do a weekend a month, you mum will get lots of support!

Will the others also be at this meeting trying to push you into it?

Tbh this is pretty much what happened years back when another relative was ill and over the course of a year I used most of my annual leave to come up to help, struggling with a difficult job and eroded my own mental health. That was worse, as back then there was a horrifically verbally abusive family member involved who was very aggressive towards me (not the person being cared for). They would shout at me, say terrible things like they wished I was dead, call me a fat useless c*, say I was talentless, wake me up in the early hours when I tried to sleep upstairs. Allthewhile I was trying to keep up with a previous college course and even did some wfh admin at times when I couldn't get full leave. I no longer speak to the aggressive family member, and fortunately they're not directly related to my dad so they won't be involved in this. But people were aware of that relative's behaviour and essentially normalised it...I wish I was joking or exaggerating, unfortunately this is only a snapshot of the horrible attitudes and normalised unkind behaviour that comes from Mum's side of the family. For context, I'm close to mum and she doesn't speak to me like that herself. But she does refuse outside help which ends up with me putting myself in the thick of things trying to plug a gap. I'm not strong enough to do this all again, even though some things are different - nevertheless the pressure, the expectations, the overload are all the same.

I'm sorry that you find yourself in this position op. If you are a people pleaser or inclined to want/need the good opinion of others you can find yourself in a situation where other people expect you to do care/ fill gaps in care that they would never expect of themselves. I know because I am inclined this way myself and have found myself in the position you are in often in the past.
It doesn't happen now because I am first of all firm with myself, which , I find means I don't have to be a firm with others because I am pressured less by them.
The first and important thing you need to tell yourself is ...I care, but I am not mother's carer. Establish that right now with yourself and others.
Decide what you are prepared to do and what you are not prepared to do. Be reliable with what you are offering but don't allow yourself or others to move the goal posts. This is hard but becomes easier if you stick to it.
Remember ... Just because there appears that there is no one else to do something, or they say there isn't, doesn't make it your job. People will try to pressure you by telling you of their commitments/ needs/ wishes but if they see you as the automatic go to person or soft touch they won't be interested in yours.
This is why it's important not to seem guilty/ apologetic for not doing something. Don't go for sorry this doesn't work for me on its own. A cheerful, sorry I'm not able to do that because .... invent person.
something if you have to rather than become the automatic go to person.
If you have to do something extra in an emergency don't make that your job from now on
Be pleasant and firm That last minute (whatever it was) couldn't be helped but it's someone else's turn next time/we need something permanently in place/ we need to pay a company (caring hands is good,) to take you to next appointment.
It is hard op when you love the person concerned but for your own mental health you do need boundaries. I'm not saying I do this all the time, I don't, but I don't far more than I used to do I'm appreciated more for what I do commit to and others don't just assume that they don't need involved because Shiningstar2 will do it.
Sorry this is so long. Good luck going forward. 💐

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I agree, my DP is amazing support always listens to me, wouldn't be managing this far without him x

Ok, these are all choices your mother is making, to prioritise her own interests not yours. She could choose differently.

She must experience the consequences of her choices. Last time, you experienced the consequences of her choices.

Don’t let that happen again! Keep rephrasing it so that it is clear the choices and decisions and consequences are hers.
You’re finding it really hard and feel as though you can’t cope? That’s a shame. You need to get carers or a housekeeper in.

She isn’t struggling on alone because you won’t help her, she’s struggling on alone because she’s chosen not to get carers/cleaner in to help.

Thank you for this and I'm sorry to hear about your mum.

Yes she is claiming attendance allowance. I think a lot of this is to do with me being wfh. They think that as I can work there I should. But I have my own place and frankly their house has always been chaotic and difficult for me to work in. I work on a helpline, and so I do need a quiet space and I don't want a repeat of the spinning plates feeling I had before - there but not there, not really being able to commit fully to either task, dashing back and forth feeling frazzled. I end up feeling exhausted each day but like I haven't achieved anything. An example was trying to juggle a 3hr mandatory training while looking after my relative who was downstairs. I had the laptop upstairs (camera off obviously) managed to complete the training, must have gotten so many steps in running up and down the stairs, checking they were ok, bringing them things, allthewhile wearing headphones trying to listen to the training. By the end of it I was bloody exhausted to the point I had a little cry upstairs. That was just one day. I don't want that to be my life again. Work helps me to ring fence a bit - but I do feel there's an expectation that every moment not working should be spent providing respite care. And this expectation is focused on me, not other family members.

Also sorry I'm a bit slow to respond, I'm juggling work today and managed about 4hrs sleep, had terrible dreams and just feel like shit. I really appreciate everyone's help and advice xx

Why are they asking you to do something they aren't prepared to do?

No is an acceptable answer. No I do not feel able to provide the level of care required and maintain my other responsibilities, if you want to you crack on. Even if that means you move. Otherwise it's time to look at other options.

End of discussion.

This is a good question and one I've been mulling over today. I think what it comes down to is whilst my siblings and me have the same dad, we have a different mum. My brother's take (I believe) will be to aggressively push for me to deal with the situation because I'm related to them both and he's not. He is tired of hearing about the problems and I think he reckons guilt tripping me will solve everything. But this ignores the point that the person who's ill, is his dad, therefore I think we should share this x

What your family are asking of you so totally and utterly unreasonable. You have every single right to say “No, I will not do it”. Are you frightened of their response if you say No?

Maybe an email or text would be easier than saying it face to face. Just say I cannot do this, I have a fulltime job and I cannot combine the two.

Any time anyone suggests a formal care role for you: ‘I’m afraid that would not be possible with my work and study commitments. I suggest I contact adult social services for a care assessment and see what they can suggest. Do you agree?’. Repeat as required.
If it gets bad enough, for the sake of your father call them anyway as a safeguarding referral against your mums wishes.

This situation is bigger than either you or your B .

Someone needs to force a social care assessment- maybe your DH can say one is needed as you are making yourself ill and you can submit it.

Do you know if they are likely to be self funded or not ? I think savings of more than £23k in England not sure how property works as they both live there.

If I'm being completely honest, I've always felt scared of people's reactions. I am a very timid and anxious person who puts on a front to get through the day. I'm under no illusions, I know I'm a fragile person and I've struggled with my mental health for years, which started with bullying in my teens. Ironically, the dad I'm now being asked to care for was the biggest bully of all, treated me v different to my siblings (who are from his first marriage) and due to my dad's behaviour I had a breakdown when I was 16. It feels very strange, writing this down, being able to be honest for once. When I think about this I wonder why I have had anything to do with him since I was 18 and old enough to leave. He's made it clear in the past he doesn't like me and that he wanted my mum but not me.
I think I've stayed in contact with him because my mum and siblings have better relationships with him. Now I'm dealing with the consequences - should have cut contact with him years ago. Too late now - he is old and I'll never get an apology for how he treated me, and he will expect all the care you'd give to a good dad, despite having treated me with hatred for the first half of my life.

Do NOT provide any care, OP, because you will get sucked in.
Other family members have absolutely no right to tell you what to do.
Contact Social Services and request an assessment - this will ensure that your parents get the help they need now and, crucially, they will be in the system as and when residential care is needed.
I'd also be engaging far less with phone calls and visits.

They definitely don't have that in savings. Pretty sure he spent all their savings on addiction, around the time I had my breakdown when he was at his worst with the bullying towards me. Finances never recovered. There will be a mortgage to pay once dad has gone, because he put no provision in place for my mum and spent all their money

I appreciate this and I do think an assessment is way overdue, but last time I mentioned carers I was told under no circumstances was I allowed to mention this again

Wow OP. Firstly, there’s absolutely no way you should take this on. In my experience of dementia, any “solutions “ worked out are only good for a matter of weeks anyway once you get near the latter stages, as people’s needs can change so quickly.

They all sound very bullying. If needs be just refuse to discuss this stuff in person. Emails are better sometimes if you find yourself always agreeing with them against your better judgement.

“I’m well aware more support is needed. I’ll send you some links to some care agencies or care homes. Unfortunately offering more support is not something I’m able to offer for many reasons.”

You're probably not actually that fragile just conditioned to abuse.

If you didn't have a shit family, you'd be fine probably.

So what! Repeat as required anyway. They are not your boss to ‘allow’ your speech. If they don’t like that answer, maybe they’ll stop asking you!

I told my partner the other day that if I wasn't with him I would probably have ended up in an abusive relationship. I'm not good at looking after myself and it's in my nature to people please to exhaustion and throw my own needs under a bus. God threw me an angel when I met my partner 💞 he has been the first man to treat me with kindness x