Am I being awful or do you need to protect yourself a bit?

[foofooloo]

Hi, think I just need a bit of a vent or a handhold as not sure what if any help anyone can really give to be honest.

My parents aren’t even that elderly at 70 and 72 but both have disabilities and in the last 4 months or so things have gone downhill to almost crisis point and my mum especially is becoming so demanding and needy I don’t know what to do about it.

For background my dad has always had ill health, mobility issues for about 20 years, and been ill tempered and miserable (picture the one that sits in the corner shouting Feck in Father Ted, that’s basically my dad although not through drink) but always managed to get himself about the house, in and out of bed showers etc and so on. Around Easter however his health took a sudden dip and his mobility has gone to almost zero, he’s become incontinent and keeps having falls. We have some external support from carers twice a day and the falls team.

My mum meanwhile out of the blue had a very rare cancer a few years ago that required a huge and horrible operation which has left her facially disfigured and with struggles to eat and talk. This has obviously been hugely traumatic for her.

I have always been very present in their lives, always lived close and seen them almost every day, even before illness I helped them a lot with various stuff, holidayed woth them etc.

However I have a very young family now, a job, my partner is on the rigs so is away for long periods.

Things have spiralled since Easter with my mum especially struggling to cope woth caring for my dad but also I suspect either having a depression/PTSD coming through possibly delayed reaction to her own situation and lockdown etc OR the beginning of dementia- and I don’t know which or perhaps a bit of both??

I am getting crisis calls or texts from her almost daily. When I go round it inevitably ends in an argument or a fall out, often over “nothing” really, she is crying and angry - my mum was never like this before, I never saw her cry once in my life until recently. Even when her own parents died.

Me and my brother have been running around frying to get supports put in for them, carers, adaptations to their completely unsuitable house, talking about an extension for them that we will contribute to pay for, bought dad an electronic wheelchair, shifting furniture and putting up handles etc, phoning people and meeting people all while both working. But yesterday I go round and she’s sitting there in tears saying no one will help her and neither of us care?! This was me dropping in shopping for her, I said I needed to go to pick my daughter up from school and as I said her name she rolled her eyes and thag was it for me… I lost it.

I am now sitting here absolutely fuming with her and can’t bring myself to check up on her or to try and make things up with her this tine.

I feel like she’s behaving badly - but am I wrong for thinking this? Am I being mean or do I need to be firm with her? Is there a point where you need to protect yourself a bit? I have my own kids to look after and be present for and happy and energetic woth and I can’t do thag if my mum is draining me emotionally all the time?

I am new to this so need a bit of help with boundaries and guilt I think? Sorry for tbe long post.

Oh you absolutely do need to drop any feelings of guilt - it is not easy to do though. You need to be quite coldly practical at times and to grow a bit of a hard shell.

I suggest you drop in on the Cockroach Cafe thread, lots of brilliant advice there.

I don't think you are unfair. It sounds a very challenging situation, but I still think your young child comes first, esp if your partner is away on the rigs for stretches.
It sounds like your mum is depressed. If this is the case, it might help you if you can accept that NOTHING you do will EVER be enough or right, it's coming from her skewed world view.
Protect yourself. You didn't choose to be a daughter, and neither did yours, but you chose to be a mother. Keep on doing a great job at that, and lean on your brother more for now.

I was recently in a similar situation, and to keep something of my own sanity I had to recognise that my mum was being hugely emotionally manipulative...yes she had a lot to deal with (nothing like as much as your mum) but her self-pity spiralled out of control as she had nothing else to think about, it was all me, me, me.

I had to get very practical and think "this is mum time" (whether visiting or shopping or admin) and "this is DS time" ...and not allow myself to be ensnared by sobs down the phone or queries/accusations from neighbours and family as to why I apparently wasn't helping

it was all very stressful, and hurtful, and I wish I had got more practical earlier, not stopped loving or caring about her, but compartmentalising the time I gave to it so that there was headspace in the day (and in the middle of the night) for other things.

It sounds cruel reading that back, but you have to do it or you are going to run yourself ragged; I'm sure your mum knows full well what you have done/are doing/will do for her, and as hard as her situation is, it doesn't sound like you could do any more

I must have a look at the Cockroach Cafe myself...

Thanks… I am extremely conscious of not repeating this for my own children. I know I can be a bit like my dad at my worst (short tempered) but my mum was always a great mother and put us first as a classic “housewife” over the years (also in how she looked after my dad) and never showed any inkling of her own emotions about situations to protect us. Which is perhaps why I find this shift in her behaviour so unnerving as it’s completely new to me (she was always the dependable one in the family).

She has a telephone appointment with the GP next week although this is next to useless because of her communication issues and also the fact her GP is awful and has done nothing to support either of my parents in the last few years. So I don’t hold out much hope for any practical help being forthcoming. She is already on a low dose anti depressant but I suspect she doesn’t take it every day. We spoke about a counsellor and she said absolutely not under any circumstances so I think thag wokld be a struggle to initiate.

@Peach1886 your first paragraph describes my situation perfectly, my mum is so consumed by her own situation she is only interested in wallowing in it. It’s all she wants to talk about or have us talk about or deal with. Rolling her eyes at me having to pick up my daughter sums it up.

Neither of YABU
A disabled 70yr old cannot care for an incontinent, immobile 72yr old. Yet you and family seem to expect her to just get on with the bulk of the caring with only a bit of respite from drop in carers.

She’s crying because despite all you have done, it simply is not enough and she is at the end of her sanity.

You need to look into around the clock care for your dad, it might be time to look at care homes for him.

You come first
Then your partner and daughter

Then other stuff

You are doing the right thing getting in assessments etc. You MUST put boundaries in place because being the best mum you can is the important thing. Don’t feel guilty!!!!

He’s not at the stage of a care home he’s half way there but not yet, we’ve had every kind of professional in to assess OT, physio, GP etc and this is where we are at, carers in the house three times a day plus some additional supports from falls team and physio etc but round the clock care isn’t on the table unlwss it’s someone who lives in their house which would be a cost, space issue not to mention finding the right person. I fully appreciate the base problem is my disabled mum cannot look after my disabled dad. However she also can’t take it out on me when I am literally there helping her (example being handing in her shopping yesterday).

Are there any carers for your mum as she’s disabled too? Or is the focus only on dad?

Focus is on dad. We did have someone in for my mum when she was first ill but she didn’t like it and asked for it to be stopped… she doesn’t need physical help she is mobile and physically well.

It's shit isn't it and it can be hard to see the wood for the trees.
Does your mum get any break from your dad e.g. a sitting service or could he go to a day centre once or twice a week so she can get out/just do her own thing and not worry about your dad? Even with carers coming in the mental strain on her is massive and she will transfer that to you.

Ok.
Glad to hear mum is physically able to care for self, can she get psychological assessment for the PTSD/depression you suspect?

When were assessments done on dad? Before Easter or after Easter when he’s had his most recent decline? Might be able to get him re-assessed? If not care home level, can they move to supported housing? It seems very expensive to talk about extension on home and such when it might be best for them to move to more suitable home?

Can your brother help more? Often it’s we women that get stuck with the bulk of parent care. I did being both eldest and a woman. I understand your frustration, you are being run ragged with all this.

She's obviously overwhelmed by it all and is attacking the only people she feels able to have a go at ie you and your brother.

She probably feels that your dad is getting all the attention while her needs are being ignored. Plus she's expected to do more than she can manage.

You could write to her gp setting out your concerns about her as well as everything else that's going on.

Yes you do need to protect yourself and set some boundaries and you'll probably feel guilty about it but that's ok. It's a difficult situation.

Unfortunately both depression and early dementia can make people self centred and prone to lash out. You've got a huge amount on your plate but sadly your mum just isn't in a position to see that.

Sounds incredibly tough for everyone involved.

Get a care needs assessment from social services for each of them and state categorically that you are not prepared to provide any further support. I personally would NOT be arranging and funding extensions etc.ni would be investigating and pushing for them to sell up and move into residential care.

All this endless propping up of people in their own very unsuitable homes no matter what! That would have much better quality if life in residential care where a team of people are on call to help. And you can visit regularly.

However she also can’t take it out on me when I am literally there helping her (example being handing in her shopping yesterday). She can't, but she's not in her right mind. If you can, put in boundaries as to what you do/don't do while at the same time de-personalising her anger and upset which is being misdirected at you. Being angry at her won't help anything. any more than it helps when dealing with a tantrumming toddler or a teenager rushing out of the room, slamming the door and saying "I hate you". And she doesn't really deserve it -she's in an intolerable situation just as you are.

That would have much better quality if life in residential care where a team of people are on call to help. Depends what you mean by "quality of life". Physical care is good. But almost all autonomy is lost. For some people that is too big a price to pay.

a sitting service or could he go to a day centre once or twice a week so she can get out/just do her own thing and not worry about your dad? A good idea, don't know how available it is for older people, but it's an established service for those caring for children (inc adult children) with disabilities.

Also look at what support there is for carers - in my area there is a support team for carers which has regular meetings (a sort of real life Cockroach Cafe), information on technical aids, 1-1 phone calls to see what the carer needs, etc. Whether you tap into this for your mother or yourself is up to you.

Neither of them are prepared to move… we’ve discussed/argued about this at length over many years. They live in a rural setting and have done all their lives together in this house, which they built. My dad would need to be forcibly moved or past awareness, my mum says it’s a good idea in theory however actually doing it in practice would never happen, as she wouldn’t pack her stuff up and move house after nearly 50 years, or “happily” move into a more urban or “shared” setting ie a flat or supported accommodation. We’ve tried with them on this. The extension and alterations to the house is to allow them to stay. It would need to get to the point where the decision was out of one or both of their hands ie power of attorney situation. We’re not there yet.

Back to the father Ted scenario if you can imagine that…

The same applies to getting dad to a day centre. It’s about the only time he bursts into life is when any of these kinds of suggestions are made and he’s absolutely against it.

Mum gets out when the carers come, she can go shopping, I can sit with dad, one of the carers has offered to come and do some afternoons privately. But when they go to put these things in action my mum changes her mind and says she doesn’t want strangers in the house!!!

Thanks for all the advice however, I will take it on board. I know she’s lashing out at me because I’m there and I can take it but it makes me dread going to see her so it’s having the opposite effect she wants.

There comes a point when you have to say it's strangers in the house or nothing before you collapse in a heap yourself. With FIL we have to ne very, very clear sbout what we are prepared to do and he can be very sulky and manipulative when he isn't getting his own way. He would think it entirely reasonable for one of his sons or DILs to leave her own family and sleep on a chair 7 days a week to look after him and MIL.

Of course they deserve help and care, you and your DB are doing a lot.

Of course we can understand how hard it for them to be losing independence and perhaps some of their dignity as well, it it's also not fair that you make all the sacrifices.

Of course they hate the idea of leaving their beloved home but you all have to do what is the most practical, and that does mean they must compromise as well.

A lot of emotional blackmail and manipulation is used in these discussions and boy is it difficult, but you have to stay detached and be fair but firm.

And keep at them. Just because a suggestion is forcibly rejected at first, like a seed, once planted it will grow and be accepted in time, especially if you can get social services on side.

@TonTonMacoute yes maybe the seed will start to grow like you say now the reality of living in a completely unsuitable house becomes more tangible.

Until recently they got by, so trying to futureproof with them was impossible.

If she has the option of more care & has refused, I think you need to step back. Hard as it is yourself and your family come first, do what you can and if she keeps saying it isn’t enough reiterate that she needs carers.

@wonderstuff

Unfortunately both depression and early dementia can make people self centred and prone to lash out. You've got a huge amount on your plate but sadly your mum just isn't in a position to see that.

Sounds incredibly tough for everyone involved.

Agreed my mother was the same at the start of the vascular dementia.....

I lost it with my mum too.. but in the end we put her in a home and she was much better being cared for round the clock and not lonely either... might be something to think about? Assisted living?

I feel for you & have a similar situation myself, only my DF is older & abusive & won't allow other help despite my being at the other end of the country & a bigs are recently, as "that's what I have you for" It's incredibly draining, especially as he doesn't acknowledge neither mine nor DDs health issues & if I try & push to get back up in place for him, he gets very nasty & blocks me.

I was very ill this last few weeks & when he started with his abuse on the phone again, I snapped back & have left him alone since as I just couldn't cope & I'm looking after me for a change. I still felt like crap for doing it though, but surprisingly angry with him too. I know he's an arse, but I usually let it ash over me.

I needed to back off as I was crumbling. I got an odd call early this morning & it was from his mobile, rang his land line an hour later to have him deny it was him that rang me & that he'd just woke up & he was very ill. The time in the phone with him he sounded awful, but it somehow felt false & manipulative , but I felt guilty for not believing him. I rang back an hour later when he didn't expect it & he was a different man who picked up the phone, he's clearly okay😏

@SingingInTheShithouse that sounds extremely draining… especially when you are far away. If you are ill you need to look after yourself first, or you will end up needing help too - it’s a vicious circle!