Dealing with guilt and expectations around elderly care

[letshybernatenow]

I wondered if anyone has any tips/advice/words of wisdom about dealing with my own feelings of guilt and expectations of others about what I am (or am not) prepared to do/sacrifice to care for my elderly mother as she would like?

As background, my relationship with my parents is/was best described as complicated. To the outside world they were amazing parents and in reality they were certainly not the worst. Family always came first to them but unfortunately I had 2 siblings who were very difficult (often in trouble from a young age, addiction problems, violent/bullying behaviour etc). Our parents made lots of excuses for them and supported them/bailed them out no matter what (even when things they did were like a particularly dramatic soap opera story line). I was always expected to be the 'good' one and blamed for causing trouble if I ever complained about the way siblings treated me. As a young adult, I was expected to help deal with siblings' dramas. As I got older, I realised I had a choice and distanced myself from this, to the extent that I went NC with the violent sibling and minimised contact with the other. I had a real point of clarity when my parents attempted to arrange for violent alcoholic sibling to stay with me for an extended break when I was on maternity leave. Parents blamed me for causing upset/drama/spoiling things etc, minimised siblings behaviour, accused me of overreacting etc. There were a good few years where our relationship was incredibly frosty and they continued to try to persuade/force me to change my mind. One sibling has since died and the other finally straightened their life out in the main, so for the last few years relationships in the family have been better. Parents always tried to make it appear that they had a nice normal family, so as far as extended family and friends are aware there were a few years where signings made a few bad choices (who doesn't in their youth?), sibling 1 died from a random and unexpected health problem and I got a bit precious when my DC were small but realised the error of my ways when sibling 1 died and came back in to the fold. I never publicly challenged their version of events at the time, or following sibling 1's death, as I knew this would add to the upset for parents.

My mother is now widowed, elderly and in ill health (including confusion/suspected dementia). When Dad was very ill, and immediately after his death, I dropped everything to support Mum. Obviously this can't continue long term so I have had to reduce what I do but the expectation from her, sibling 2 and wider family (as well as HCP etc) seems to be that I am the default carer/helper. I already feel that the amount of time I am having to devote to dealing with her is too much and it's very clear that she will need more help as her health deteriorates. Sibling 2 promises her that she will never have to go in to a care home, but clearly would not be able to actually become her carer. Recent history with them tells me that as soon as things are slightly tricky they will say it's my 'turn'. So I know that if I don't make clear boundaries now the expectation will be that I bear he brunt. Even if our relationship had been perfect, I would not be prepared to give up my own life to become a carer. I now feel that everyone expects me to do more and judges me for refusing/challenging Sibling 2's promises. Sibling frequently tells me/family/HCP how difficult it is to do what they do for mum, but they do it regardless, and if they were in my position they would be happy to do far more. I know that I have been conditioned for many years to sacrifice myself to keep the peace/help siblings etc so I'm sure this is part of the reason but I can't help feeling incredibly guilty every time I say no, or stick to my boundaries. At the same time, I feel angry that at a time when my life has become a little easier (DC are young adults, work is more flexible, finances are a bit easier etc) I am being expected to give up things I enjoy to look after someone who did not prioritise me or my DC. As a result, I keep trying to put up boundaries then feeling guilty/judged and making exceptions (as a minor example from this week, saying I will do X when I next visit, then getting messages from other family members about how concerned Mum is that X hasn't been done yet and couldn't I 'just pop round' to sort it (3hour+ round trip) so I go just to avoid having to keep discussing it). I am aware that part of the issue with extended family is that as far as they are aware, siblings were flawed but lovely and always around for our parents whereas I spent years being absent/unreasonable and upsetting our parents but then realised the error of my ways so need to step up now. Obviously I can't set them straight now as it will seem incredibly cruel to an elderly confused woman, and they probably wouldn't believe me anyway. I know I need to stand firm, and if anything do less, but how do I get over the guilty feelings?

Apologies for the long post.

From what you've written you have a clear idea of what you are able and willing to do. Stick with that and stand firm.

If extended family and your sibling offer their opinion on what you should be doing, tell them it's not possible and suggest whoever you're speaking to at the time does whatever the thing is. Don't explain why you aren't doing (or can't do) the thing, it will give them a chance to poke holes and find solutions so that you can, in fact, do the thing. It's not a conversation, it's an answer - "no"

Tell all the HCPs that you aren't able to do anything at all regardless of what you are able to do. Do not feel guilt from HCPs. They don't know you. They want family to deal with everything because it's free. Get the maximum available support in place for your mum from outside agencies.

I'm sorry for your difficult family history and understand how that it still impacts you, but I don't think you need to share it with extended family/HCP as a reason for not doing more. Even if you had the perfect family and childhood, you would still be perfectly entitled to make your own choices on how much care you were able and willing to provide. Adult children aren't responsible for their parents. And services exist to pick up the slack.

Your question of dealing with your own guilt - talk to people here and irl who are going through the same. Realise your choices are perfectly valid and reasonable. Have therapy if you need it

At 3 hours distant, even if you had the most perfec childhood with saints as parents, you'r capacity to help would be limited. And there is absolutely no reason to feel guilty about that.

You give the example of needing to do 'X' with family hassling you about it - just say - what can I do from 3 hours away? I'm due there on friday , I'll sort it then. A gentle push back. If they continue, ask 'so when did you last see mum?'.

be clear with HCP's - I'm 3 hours away so no point calling me if Mum's fallen over and needs picking up, for example. I visit once a month.

Keep things business-like.
Decide on how often you can visit (eg once a month, on Saturday afternoon) and what you will be responible for, eg making sure bills are paid, your Mum has claimed all benefits she's entitled too.

Once those are in place, has your Mum had a social services assessment ? Once there is a diagnosis of dementia, the focus moves from heatlh to social care, with social workers arrnaging care rather than GPs.

If you have time, see if there are any activity groups your Mum could attend. Usually run by charity / community groups these days. And use the attendance allowance to pay for taxis to get her too and fro.

Bottom line - don't take any hassle from family, you don't have to give up your life to care for your Mum, do what you can, even if it's a visit once a month and you bring cake. And never, ever promise someone that they will never need to go in a care home

Thank you for your words of support. @socktree yes, I've learned the hard way that explaining the practical reasons I can't do something is interpreted as an invitation to discuss how I could make it happen so now as far as possible I simply say no (or something bland like 'I can't do X due to other commitments').
The family history certainly isn't my reason for not doing more (and I won't be sharing it any further in real life as I know it would cause upset for no real gain), but rather the version that has been sold to extended family is part of the reason that I think they feel I should do more. The accepted wisdom seems to be that sibling2 lived with parents for many years to help them through tough times (inc sibling1's 'mystery illness'/bereavement/parents illnesses etc) whilst I kept away having fun, so only fair that I step up now. Whereas the reality was sibling2 being supported by them and causing huge amounts of stress. I will keep quiet but it is irritating to hear sibling2 described as a saint and saying nothing. I know that sounds petty, so obviously keep it to myself.

@DPotter we are in early stages of assessment etc for mum (it's pretty clear that Dad was doing more than we thought and he and mum have been covering up for mum's confusion/ill health for some time). It's very clear to me that there is some form of dementia though (tests have ruled out other things and she has many symptoms). I think to some extent I've made a rod for my own back- when Dad was really ill and it became apparent that mum was not right I reverted to 'good girl' mode, dropped everything and looked after her. So now I will need to cut down what I do/how often I visit etc which is harder than never having started.

@DPotter nailed it. What finally tipped me
over the edge to giving zero hoots with the peanut gallery was that none of them visited MIL in her last week despite being repeatedly told she was on her way out. They don’t actually care OP, they just want to know that someone else is doing it. They’re still chirping about what FIL needs and it gets ‘yes, you’re right. We’ll leave that with you to sort since you’re on it, Bye!’

@letshybernatenow I would absolutely recommend adopting the mantra (and believing it);

What anyone thinks of me is none of my business.

Once you have adopted and enbraced that attitude, or maybe along the way, get yourself a copy of the Let Them Theory book by Mel Robbins and read it with an open mind.

Those,2 things will help you find the confidence and freedom to say ,"I wil not to do....." and to only agree to do the things you want to do.

Regards SS. As long as someone, anyone, is doing, they will provide as little support as they legally can. So be careful of that.

I would keep saying no and have therapy. Agreed unfortunately that what other people think of you is up to them. The only person living your life is you.

With the relatives at the Xmas round robin level of info I like to combine a couple of phrases.
Something about dignity, respecting their wishes for the present and future care needs along with justification from the past 'mum was always such a stickler for keeping up appearance publicly'

Similar dynamic here to you!

You sound like a lovely individual who has been told/guilt-tripped since she was a child that you should put everyone else's needs before your own.

You are perfectly right to finally put some good boundaries in place.

The rest of your family can think and say whatever they want, you don't have to listen to them especially as they have done very little themselves to help.

Make it clear you will no longer be a primary carer and get on with your life.

They are alternatives: social services will do an assessment so they can assign carers or if your mother is too dependent to now live on her own then a care home would be suitable.

Thanks everyone. I have taken all your advice onboard. For now I'm focusing on not being guilt tripped in to doing more, then I plan to gradually try to reduce what I do. Some of this will happen naturally (eg once I have her finances sorted, that will take less time) and for other things I am trying to set up ways to do things differently so less of my time is involved. I am trying hard to just say 'no' rather than offering reasons that can be unpicked etc.

We had a SS assessment but Mum wanted Sibling2 there as well and they underplayed how often Mum needs things and kept saying 'we' will do that for her. I did question how Sibling2 will have time to do what they claimed they would do and repeated that I am don't live local to mum and have work and other commitments so will not be able to take on any more caring responsibilities. The version of their lives that Sibling2 told made them sound wonderful and selfless (daily visits to mum, providing home made batch cooked meals for her freezer, spending one night mid-week with her, taking her out for drives in the countryside every weekend, taking her to theirs for Sunday dinner every week and even taking her on their family holidays). Unfortunately this is at best a huge stretch of the truth. I'm not sure whether the social worked will have seen all this before, or just thought I was a negative bitch but I did challenge this (eg. 'When did that start? I remember a few weeks ago you said you couldn't see her at the weekends because you needed to rest after being at work all week).

Refusing help from 'outsiders' on the grounds that care is not needed - and then looking to adult children (wherever they live) to provide full time care is an extremely common problem. Ideally it would be a combination of carers and family but elderly parents often alienate their adult children and frustrate their efforts to help by refusing any care that is not provided by them. Social Work cannot put care in against your parent's will and with a sibling providing such a rosy view of how things are they will be happy to leave with a smile and few kind words. You need to speak directly to your sibling to explain what you can do to help - that you are available and willing but not 24/7. Maybe draw up a weekly schedule - if he is really doing so much it'll be hard to fit you in ! Has your mum coached him to exaggerate what he does to prevent outside carers ?

I have attempted to speak to Sibling sensibly about what's realistic but it never goes well. He either gets aggressive and tries to dictate what I must do, refuses to consider the harsh realities of her likely future needs, or pretends that he's some sort of saintly devoted child who will do everything she needs. It depends what sort of mood he's in, whether mum's had a crisis recently and who else is listening. Sometimes it's a weird combination of all 3. I don't think Mum's coached him on what to say, but this is typical of his response when anyone else is around. He likes everyone to think that he's wonderful, and promises Mum all sorts of things but very quickly finds excuses why he can't actually do it and I should. For example, not long ago mum had a very minor illness and got worried about being on her own at night as she felt more unwell then. Sibling promised her (on a Friday evening) that someone would stay with her every night for at least a week until she was properly better. I said I thought she definitely needed someone with her for a day or so but we should see how things were after that. Sibling disagreed but said if I stayed with her Friday and Saturday so he could have time with his family he would go to her after work during the week, stay over, and go to work from there. I went along with it, staying all weekend and driving home on Sunday night when Sibling arrived. On Monday afternoon I got a call to say he couldn't stay another night because she woke up too early and he was tired at work. He got very aggressive when I said I'd already said I couldn't do more and didn't think it was necessary. When I called Mum to say he wasn't going to be there she got really distressed so I ended up having to go back to calm her down, stay that evening and arrange for a few other family members to drop in on her throughout the week just to check she was doing OK.

In short, I suppose what I'm saying is I totally agree that speaking to him and drawing up a schedule of who can do what is a great idea. However, I know he will claim to be willing and able to look after her pretty much every day (as he suggested to the Social Worker) but in reality when she really needs it he will disappear. I have questioned him, in front of mum, about some of the things he claims to be doing and he says 'We're just starting that aren't we Mum, it's working really well isn't it'. It's incredibly frustrating because I know it's going to be incredibly difficult to get any external help (or get her to agree to any) when Sibling is claiming to be ready and able to do all of this. He's supposed to be taking her away with his family for a long weekend in a few weeks and I'm half expecting a phone call to say I need to go and collect her because it's all getting too difficult.

And if he does call you - you can't drop everything to go and fetch her. From what you describe I think it far more likely he will change his mind before they go away and then your Mum will be left all on her own having expected to be taken away. And what do you do - nothing. You can't keep bailing him out as that just proves his point that all the family are involved when in actual fact it's just you. In face I'd go so far as to suggest that the weekend they are planning to go away - you go in the opposite direction the same weekend.
I know this sounds harsh but all the time you are willing to pick up the pieces, others will be throwing stuff down for you to pick up.

Screen his calls and let them go to voicemail. You can do this automatically using Do Not Disturb if it’s a mobile, and that can be easier as you’re not actively refusing to pick up an incoming call.

Then listen to the voicemail the following day (or more!). Then respond “sorry, been so busy only just picked up your message. Speak next week?” or similar.
That way you’ve responded and acknowledged but made him get on with dealing with the situation.

Sorry I didn't get to the end of your post but well done on having a 'moment of clarity' - so many people on this sort of thread never do, which makes things worse for themselves in the long run.
From my recent observations caring is an almost totally thankless task, which often ends up with the carer almost completely giving up their own life to attempt to make the elderly parent's life better. This tends to creep up and grow slowly, until the carer's life is subsumed by their carer role. So set your own boundaries and stick to them. Sometimes residential care is the only solution.
Secondly you cannot control what siblings do or say or their contribution, and there is no point resenting them for it, because it will only create more friction.

And we have to learn to live with some guilt, in the interests of our own wider well being.

Or we can 100% choose to bin the guilt and accept that looking after ourselves,not damaging ourselves trying to meet the often very unreasonable demands of others, is not only ok but very healthy.

I'm wondering why you don't say to relatives something along the lines of
"I have always tried to be a good daughter but the years mum and dad spent enabling John's alcoholism and drug addiction had a really negative impact on me. I had to support myself from an early age because I had to move so far away to get out of range and as a result I have to work until retirement age as I was effectively on my own from the age of 18. It's great that John can put in the time now to support them the way they supported him for 15 years"

Or whatever.
I'm not saying you should. I'm just wondering why you don't. Not my business, no need to reply if you don't want to

Yes I agree with the above - turn it back on them and say something like 'I just feel I have to let sibling contribute his share of the care as he feels he needs to do it to make it up to her for all the difficult times. As you know my parents sacrificed so much for him and other sibling so I can't over rule him now' They might look startled but so what

That's a really good question. The answer is partly feeling that I don't want to cause Mum more upset by bringing up past problems that I know she finds it hard to talk about (especially since Sibling1's death) and partly because I fear that I simply won't be believed. Mum and Dad went to a lot of trouble to hide the real extent of the problems so although extended family became aware that there were some issues I'm sure they think Sibling2 was just slightly wild for a bit, not the harsh reality that they had to deal with. You are exactly right that I moved a long way away to escape- but as far as extended family are aware this was just down to my ambitions and wanting to build my career. So I suppose I want to protect Mum by no bringing up things that I know have been really hurtful and at the same time I fear that even if I risk that, I won't be believed.

I don't really understand why I feel so concerned about what others think about me and I am working on this.

Ultimately, it's probably not that relevant whether family thing Sibling should be doing more (although it often feels it) because I am fairly certain that whatever he promises, he won't see it through. I just wish everyone could be honest about what mum is likely to need and what we can offer, so that we can get proper plans in place.