Drained with the expectation and terrified of what is to come

[Frazzledmummy123]

I'm an only child. Parents, DM is 83 and DF is 87. Both parents still living independently, for now anyway. DM is DF's carer. DF has lost almost all mobility but only uses a walking stick out of vanity/stubborness, and has some cognitive decline which has not been addressed. He has needed a walking frame minimum for past 5 years, but DM refuses (she is the boss). DM starting to slowly go downhill. Very forgetful, potentially carer's stress?, dropping a lot of weight. She passed a recent health check.

Their house isn't suitable (see a previous thread for details) as inaccessible however have at least accepted a few small adaptations. An extra handrail on stairs and outside, bath seat, etc were supplied. No downstairs loo, or anywhere one can be put in. House is between steep hills and nowhere near shops or public transport. My mum who has been very mobile now says the uphill walk to the local shops is getting too much as are the hills on the street. Gardeners let her down a lot and won't pay much for good gardners, and as a result, can't cope with the garden. I don't drive because of anxiety and she constantly guilt trips me about this. There has been no forward planning on their part and the plan was clearly to put it all on to me.

I am like her therapist about all her and my dad's medical ailments. Every time I see them there is something new going on, or another test result needing followed up, and a new worry. My anxiety is off the chart, (I feel guilty for as I know many of you have it much worse).

I have 3 children about to stop for summer break (I'm in Scotland) and now, my mum wants me, DH and the kids to go on holiday with her during the holidays and my dad (clearly so I can help care for my dad). She landed this on me with a fortnight to go before school stopped. I have a family holiday for 2 weeks booked and there has already been guilt tripping comments. How she hasnt had a holiday for years, etc. This is partly because they chose to not go away rather than have my dad using better walking aids.

I know some of you will probably think I am being selfish, but I am just fed up of the fall out of their stubborness all being put onto me. I know things are only going to get worse, and the constrant stress, worry and anxiety is overwhelming. I know this is catastrophising, but if my mum was to pass away or become unable, my dad would need 24/7 care and I am scared of the future.

They had a social work assessment done about 8 months ago, which is where the hand rails came from. They won't accept carers in, so they clearly plan to struggle on with me on standby to pick up the pieces. I feel so overwhelmed and scared.

I would like to add, I am not saying I am not going to help out (which I do a lot of at the moment), nor would I not help my dad if anything happened to my mum I just feel scared of the level of it when I am raising a family, and feel some of the expectation (like the holiday) is becoming unfair given this was partly by choice my mum hasnt had a holiday in years).

You are definitely not selfish. Someone will probably be along with more info about the legal side of things for Scotland, but I wanted to offer some perspective on the issues you raise.

Re holiday: It would be bonkers for you to look after 3 children and 2 elderly relatives on a holiday. It certainly wouldn’t be a holiday for you! Your parents might not be able to get holiday insurance anyway, due to their health issues.

Re housing and mobility situation: they have not planned ahead. Despite their wishes and intentions, it is not on you to make up for this lack of planning. Choosing not to use a walker because vanity is futile. What on earth do they think other people will think? That they’re old?

Re the ‘counselling’ you provide: it’s nice that you are a sounding board for them. Their medical status is their whole world right now, hence it being the go-to topic. Elderly people get like that. They also become more self-centred. I think it’s some kind of evolutionary ‘survival’ thing - bending someone’s ear constantly about this appointment, that cream, this ache and that weird lump means that the listener is more likely to feel obliged to help, thus ensure their survival. Also, I think elderly people fail to realise that things can no longer be ‘fixed’. Instead, it’s about managed decline. I would adopt the air of a call handler over this - listening is therapy itself but don’t allow yourself to be embroiled in the worry.

Re the worry about the future: given your parents’ burying of heads in the sand and hoping you can magically fix things, bear in mind they could still have years yet to live. It looks like it will need to be a ‘crisis’ that prompts the authorities to step in. Set some boundaries for yourself now, otherwise you could end up living there at weekends, for example. You are not legally obliged to provide 24/7 care for elderly relatives, nor are you on the financial hook to pay for their care.

You need to workout your boundaries about what is realistic for you. Not what anyone says you should or ought to do but what you can reasonably do and most importantly want to do.

You are not alone there are so many women in the same position as you. Some are fantastic at being carers and voluntarily take a lot on. Other are more like me, I care but I do not have the patience or desire to be a carer.

I am currently drawing non-negotiable lines with my parent. Yes they try to guilt trip me but I respectfully stick to my boundaries. I am like a broken record and keep repeating that they need to do xyz Eventually something happens and they have to accept my suggestions.

Unfortunately this means having very difficult conversations about what is realistic. Ideally they move to sheltered accommodation with carers several times a day or a care home.

Imagine if they live to 100, that is 15+ years of your life in a caring role vs making sure they are cared for.

You do not need to care for them.

If your DF has mobility issues and chooses not to use a walker/wheelchair/rollator then he will have a more limited life.
That is his choice.

It does not mean you need to step in,

I am disabled. I use a wheelchair. I have travelled to Morocco on my own, Spain with my elderly mum and use trains regularly with wheelchair assistance.

They could go on holiday. They are choosing not to. It's not up to you to compensate for their choices.

If you have children then even if you do want to care for your parents (and frankly it doesn't sound like they are physically that bad, they just want to put the load on someone else) your children need to come first.

Practice saying no.

Never feel guilty for not accepting more responsibility than you can cope with. You have three children. They need your attention in the summer. You can't look after them and two elderly people. If you try you will fail and I can assure you that everyone will be deeply unhappy and everyone will blame you. Probably yourself included. And none of it will be your fault. So say no, in the confident knowledge that it is the best answer for all-round happiness this summer.

It's unpalatable, and people (who are not/have not yet been in this situation) might judge, but you have to be very direct with your parents about what they need from now on. IME, very elderly brains become quite like toddlers: demanding of others without any appreciation of how reasonable the demands are, and with little or no empathy for the additional stresses on the adult child's life. My parents expected me to drop everything and travel 4-5 hour round trips which cost a fortune, just to do minor errands for them. I often moved heaven and earth, rearranging work meetings and schedules, sorting early morning childcare and school drop offs, to get across country for alleged 9am hospital appointments, only to be casually told, after I'd got up at 5am to be there, 'Oh I think they cancelled it. It's rescheduled for Wednesday, that's fine isn't it? Put the kettle on.' This happened at least once a month for a year (on top of the 2-3 times a week I was summoned for other reasons) until I said no, I can't make it today.

The truth is, at this level of decline, they need professional care, not you run ragged with guilt. Your primary duty of care at this stage in life is to your own children. Explain that you do not feel comfortable taking a holiday with them, as you couldn't offer the support she so badly needs, since your energy and focus would be on keeping the children safe, fed, entertained.

In advance, look at some good respite care homes in her area. Then suggest your dad goes into respite care for two weeks so she can have a break (maybe with you, fi you could cope with that.) Or the pair of them could go into respite care together for a fortnight. Explain this is in no way you pushing them towards permanent care. You respect they don't want that. But they may find that the relief of having assistance is actually uplifting.

Long term, contact social care, explain the decline and be very clear that although your parents' expect you to be at their beck and call, you can't. You have work, you have children, you are in no way equipped to handle their increasingly complex demands and you want a care plan put in place for them. If necessary, you need to make yourself entirely unavailable for a good two weeks (maybe when you are on holiday with DC), so they realise they need help.

You aren’t selfish at all. Every person has a limit and the way to look at it is that if you give too much attention to your parents then your children will lose out. Your priority has to be your children. That said, the guilt just eats you up. When my father was ill I always felt like I should be doing more and felt bad for not giving up my job to look after him. I don’t really have a good solution but I understand how you feel.

I would be hugely surprised if anyone on here said you were selfish for not taking your DPs on holiday. How many holidays did they take their DPs on when you were young ?

I am also an only DC with elderly DPs, although thankfully they are not demanding. The one benefit is that I can do as much or as little as I feel is right without being judged by siblings - don't let the voices in your head become your judge.

On the medical litanies, tbh I zone out a lot of the time unless it's something genuinely concerning. I also wouldn't be taking on any criticism about not driving etc. she only wants you to drive so you can take them places,

I know its hard but didnt you post a little while ago about this and the holiday issue? Maybe I am going mad..

Thank you everyone, I really appreciate all your replies.

To the poster who asked how many holidays they took their parents on when I was young. The answer to that is none as both their parents had died before I was born. They never has to care for their parents and raise their one child at the same time. Neither cared for parents at all, my dad lost both his parents young and my mum was living 200 miles away with her sister doing the caring. This makes me so angry when my mum starts guilt tripping and placing expectations on me.

You aren't going mad, I replied to someone else's thread and mentioned it.

It feels like I've read several threads from you OP.

I've nothing to add to whatever I said last time, other than I think it would be good if you could get on top of your anxiety. Please see if you can overcome your fear of driving! You are way too young not to drive and it must limit your life so much. This is completely aside from your concerns about your parents.

Have you spoken to Age Concern at all? Have you looked into Attendance Allowance and all the other things suggested previously?

Re. the holiday the answer is "I'm very sorry Mum but I can't take you and Dad on holiday, I've already got our family holiday booked as you know." If she says "but it wouldn't be taking us on holiday" you reply "but you know it would be, you know I'd have to do the caring and looking after".

Tbh, it sounds like it might be their last holiday, so don't you think you could go? Maybe she would have looked out for her elderly parents a little bit if she could have?

I knew I would come across a non-driver basher at some point on here. Would you rather I drove, got panicky behind the wheel and injured or killed someone?

Age doesn't come into it, you can be a driver or non-driver at any age. I know plenty young people who don't drive by choice.

You are not being selfish. You have your own family and your own physical and mental health that you have to put first, before their needs. If you can't cope, then you can't, and that's that.

I don't know whether the arrangements are similar in Scotland to how things are done in England, but have your parents organised their finances, or arranged power of attorney so that someone (and it doesn't have to be you, it can be a solicitor or someone else) can take over, if or when they lose the capacity to manage their own affairs? Do you know whether they have made wills?

If Social services have already had some involvement, it may be worth contacting them and explaining your own situation, saying that you will be unable to step in and deal with their future care needs, so that they are already aware. Elderly people are very fond of telling the authorities that they can manage perfectly well with the help of their family, and social services will then simply pass the buck onto you. You need to inform them in advance that this will not be happening.

"They won't accept carers in..."

They don't get that choice. I'm older and I have a disability, so I have all the compassion in the world for their situation, but an elderly and/or disabled person does not have the right to refuse outside care and then expect over-stretched family members to pick up the slack. That is selfish and wrong. Tell them they need to accept outside care, period. Make your boundaries clear and stick to them. Eventually they will agree to outside care if the alternative is no care.

Hi op been through this myself. Nightmare. We just do what we can. Never brought her away. Can huff all she likes. Its my only break all year. 82. Siblings feel the same. Its def hard dealing with elderly demands. We call where we can in the week

I hardly drive especially on motorways , I would be totally anxious if I had to drive on one. Basically I only drive in a 5 mile circumference around our home and only occasionally if there’s something I need that I can’t walk to. It doesn’t limit my life but we do have good transport and uber.

@Frazzledmummy123 I could have written your post. My situation isn’t exactly the same but the fact our parents have been given so many ideas etc over the years including us offering to buy them a more suitable home all fell on deaf ears. DF is now in a nursing facility. DM is beyond negative. Absolutely refusing to have carers, help in the house it is clear her ‘plan’ was to expect us to pick up all the work. Whatever baby step we make in solving a problem she simply presents and other problem. Been tested for cognitive issues as our DB is convinced she has an illness but she passed it fine. I can see she isn’t happy with her lot but my goodness she is determined to make sure everything we do is criticised. It is a horrible situation and taking a massive toll on my health but on she goes - in fairness she’s always been difficult so it shouldn’t be a shock. I don’t think I have ever had anything as challenging to deal with as aging parents with zero desire to help themselves, or even worse graciously accept help with critiquing everything. Thank goodness I have a sister who is on my side. DB meanwhile pontificates how we should behave but comes and goes as he pleases being generally disinterested yet pretending he cares. Grim is the best way to describe the situation. In plain English - I do not think you are selfish at all. We are all getting suckered into being free carers and before you say it I know carers allowance is available but frankly I do not have any desire to work at my DM home for 35 hours a week. It takes me days to recover after a full day with her.

Start saying "no" and keep saying it.
Say "no" to the holiday.
If it makes you feel better, say you will help them to access local support services.
If they keep refusing help/carers, tell them they're on their own. And stick to it
They have to take responsibility for themselves.
They are not your responsibility.

@BeaRF75 really sound advice. You tend to think at the start that pointing them in the direction of help will see them access it. And there is help out there. We have done so with DM really good professional support from experts and she has point blank refused to engage. For me she has always been a defiant person so I’m not even surprised but it is still a grim feeling. I am going to take your words and really try and stick to them. I also think our DM is quite addicted to any attention, even negative attention. Hugs to every one

Please don't beat yourself up with the guilt over this. I was in a similar situation years ago when my df was alive and I (like you, an only child) still had 2 school age dc at home as well as working full time in a stressful job. I did what I could with the time I had, but I know that guilt you're feeling very well - whatever you do you feel it's not enough, you have it hanging over you all the time and it ruins the happy things in your life so easily. I can remember that guilt so well and I wish I could tell you how to not feel it, but they are your dp and you love them and want to help. It's so hard. All I can say is that your dc need to come first, which you know.

We had several holidays with all of us and it was a nightmare and I felt even more frazzled by the end of it trying to please so many people pulling in different directions. I have to say as well that my df was very easily pleased and easy going, but it was still a nightmare!

Absolutely this, my in laws were resistant to carers for ages but we all had to stand firm and say it wasn’t possible for us/sil to take this on permanently and they needed to accept carers.

Hard as it is you need to stand firm and not get into a discussion about it, carers is the only option here.

On the holiday - that’s a crazy suggestion, just say no I already have holiday plans and it’s not possible. Even if they weren’t expecting you to look after them it’s far too short notice to expect to arrange a holiday now, just no.

Do you have any input from social services OP?

I agree with PP who said to start saying "no". If they won't accept help, you can't continue to help. You cannot pour from an empty cup.

I think you have identified the crux of the problem - they have no experience of elder care and they have not made any forward planning for their own old age. The 'no carers' insistence comes up very frequently in these situations. All you can do is to keep saying the carers are as well as you not instead of you - but you cannot force carers in against their will. Can you persuade them to go back to Social Work for another assessment ? I would not take them on holiday, this is a very unrealistic expectation when they are refusing care . Tell them how worried you are, that you want them to have a good quality of life but that the time has come to make real plans.

I do sometimes wonder what would happen if we started using the word ‘servants’ or ‘nurses’ instead of ‘carers’ with our elderfolk, especially if it were the norm for them to turn up in a uniform instead of leggings and a boob tube like some of these carers I see. I think care at home companies are absolutely missing a trick in not offering the equivalent of a Norland Nanny in a strached uniform.

I have DP of a similar age and I sometimes think they like to kid themselves on that they are not in too bad shape because they don't have carers, just family members who happen to do the same job.

I have also been asked if I'll take DP on holiday. I'm thinking about compromising and offering to go away for a weekend, perhaps to somewhere like Pitlochry where there is the theatre but also nice views. I wouldn't agree to a week long holiday due to other commitments.