Introduction (Very Long Post Alert!)

New to Carers Connect
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Hi everyone, I’m new here and wanted to introduce myself and tell my story so far. I’m just really wanting to share, and get it all off my chest and if anyone can offer any emotional support, then that would be gratefully accepted.

I’m a 48 year old woman, (mostly) happily married, no kids. I have a great job, which is very high pressure but I love what I do. Over the past 5 years or so I’ve been caring for my dad, and it’s getting to the point now that I am completely at my wits’ end. I’m overwhelmed, overburdened and frankly, exhausted with it all. I feel manipulated and taken advantage of and resentful, but I also feel a dreadful sadness and guilt.

Having read some other people’s posts, I do feel quite bad as it’s clear that some of you are carrying a way heavier burden than I am, but I’m just emotionally wrung out from it all. It’s affecting every area of my life, but yet I feel so guilty for feeling like I should put myself first, despite what other people tell me.

I’ve always had a bit of a strange relationship with my dad. There’s no doubt at all that he is incredibly self-centred. He was my grandmother’s golden child and he grew up being admired and told how special he was. He and my mum married when she fell pregnant with me, but it didn’t last long because he just couldn’t adapt to family life. He wasn’t interested in having kids and after I was born he just carried on the same life as he’d had when he was a single man. Once they’d split up he’d have access to me and my sister once a week, but would either take us to the pub so he could meet his mates or leave us with his parents whilst he went off and did other things. I’m sure a phsychologist would have a field day with me, but it ended up where I would do anything to make dad happy, even to the extent of ignoring my own needs, and he was happy to let me do that. Ether that or he was so wrapped up in himself that he didn’t realise the damage it was doing to me.

So I grew up, moved off to University and managed to make a life for myself. I moved back to my home town after getting my degree to be closer to my family and my relationship with dad seemed much better. He was more interested in me as an adult. As long as I agreed with whatever he said, and allowed him to be top dog. He wasn’t that keen on me having opinions of my own. He was working at the time, and playing in a band, which took up pretty much every weekend. He was fiercely independent and living the life that he wanted to live.

Then things started going wrong. About 6 years ago he had a stroke. He retired from work, and at this point he wasn’t playing in the band anymore, but he still was heavily involved with his music. He seemed to recover fairly well, but despite medical advice he continued to smoke and drink heavily. Then he was diagnosed with COPD. Then about 2 years ago he had another stroke, during which he had a nasty fall and spent a long time in rehab. When he came home it was clear that his mobility was going to be affected but that he would get better if he worked with the physios and tried to remain independent. We also finally got him to quit smoking.

But by that time the damage was done. He has become house bound and relies on me to do things that he can’t, or doesn’t want to do. I do believe that there is an element of that to it. He stopped washing, or changing his clothes. He wears Tena pants but sometimes just goes to the toilet in them rather than try and move to the downstairs toilet or commode, and he doesn’t change them for days. When I go round to visit, all I get is a list of jobs that he wants me to do. He has carers who go round once on a morning but he just sends them to the shop for him to get his breakfast. They could do house work for him, or help him to wash, but he doesn’t want them to. He orders me around like some kind of PA. And he gives me the guilt trip if I don’t comply. He asked me recently, more than once, to empty his commode for him. I told him that his carers would be round to do it, and I would rather not, but he responded with “it would make me happy if you would”. I mean WTAF is that all about? Is he getting some kind of satisfaction from getting me to do that for him, even though he has carers who are paid to do it?

Once when I went over to see him he threw a wobbler because I wouldn’t go to the shop to buy him bin bags. He had a few left and I said that I would get some the next time I went over, but he demanded that I went there and then. And I complied to keep the peace. That’s what it’s like all the time. I’m not even scratching the surface here. I feel as though I don’t have a relationship with him as a daughter - I’m just an unpaid skivvy.

He’s been assessed by the mental health team who have said that he has capacity and so he has to be able to make decisions himself. I get that, I really do, but how do I go about protecting myself when I spend my entire life in a state of anxiety that he’s going to call or text me and say that he needs me to go over immediately because he needs something. I don’t have a life anymore. Because of my job and running around after him I’m constantly exhausted. I’m emotionally spent. My husband doesn’t really understand either. Once upon a time they were really friendly but my husband’s view of my dad now is very negative as he’s seen his behaviour over time. He tells me that I’m being manipulated and that I should just tell him to eff off and start sticking up for myself. It’s putting a strain on our relationship. But I look at my dad and I just feel so sad for what he’s become. I’m his only family member locally now and he literally has no one else. And I feel guilty for feeling resentful.

About a month ago dad had a fall and broke his hip. He went into hospital and had an operation to have it pinned. Since then he’s refused to engage with the staff, refused physio, isn’t eating or drinking much and is just being utterly, infuriatingly unreasonable. He says he wants to be out of hospital but when I say that in order to do that he needs to start moving around or eating or whatever he gets belligerent with me. He’s been assessed by the Psychiatry team, who don’t think that he has dementia but is obviously suffering with his mental health. It was a struggle even to get that far as he refused to see them until I offered to be there when they visited. So I thought we were making progress.

Last night, when I went to visit he wanted me to go and get him a coffee. So I had to walk to the nearest coffee shop to get him one as the one in the hospital was closed. I asked him if he wanted something to eat but he said he wasn’t hungry. I told him he needed to eat and he got short with me and said that he had no appetite. I came back from the shop with the coffee and he asked me what I had got him to eat. I reminded him, tactfully, that he’d said that he didn’t want anything to eat. He said that he’d changed his mind and could I go to the supermarket for him to get him a ready meal. I asked the nurses and they said that I could heat it up in the microwave. I just thought that if it meant that he ate something, I’d do whatever. So I drove to the supermarket, bought him some food, came back to the hospital, went to the ward. And he said he was sorry but he didn’t want to eat it now.

Half the time I feel as though I’m going crazy. Is he really manipulating me? Is it just some kind of weird display of control - that he can get me to jump whenever he demands it. Does it make him feel important? Loved? Does he ever think about the impact it has on me?

I have to admit that I’ve been lying to him of late. In order for me to have some time away from his constant demands, I’ve been telling him that on a Wednesday I do a college course. It means that I can’t get over to see him (this was before he was in hospital) and that I can’t answer my phone. I told him when I saw him earlier today that I wasn’t going to be over tonight because of “college” but whilst I was at work I got a voicemail from him saying that I needed to leave work and go and see him straight away because today had been really “freaky”. I know he’s been having some delerium but the hospital are aware and (I hope) are treating this. But I lied. I sent him a message to say that I couldn’t go because I had an exam for my college course. I just couldn’t face it. I just need some time to think about something else. I want just one day be put my own needs first. I know he’s in the best place, and that if there are any issues they can be dealt with in a medical setting, but I can’t get over this feeling that somehow I’m a really s**ty person. I’m really torn.

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Hi @Stellar5 welcome to the forum. You are not alone in this situation as many of us are going through the same thing. Is your dad still in hospital? I couldn’t be sure from reading this. The biggest problem is that your dad has been treated as self center and still think he is number 1 and will not listen to anyone. I think it not right that the carer who must know he is using the tena as a toilet not changing him, leaving it to you is wrong as you will get the blame and not the carers. I would speak to someone while your dad is in and draw some boundaries before he comes out and ruins your marriage. I know I might know every bit of your family life but even being single is a nightmare for relationship’s and being a carer makes you feel more alone especially when you try to talk about it to people, what problems it can cause. Speak to someone who might be able to help, maybe he needs a living in carer or needs a care home. If he keeps refusing to eat then the doctors will have to step in.
Good luck and keep us updated on here or the role call.

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I’ve been manipulated too. Hindsight is a wonderful thing!
You will never have a better chance of shaking off dad than now.
It’s time you had counselling, life changing for me, and your husband had a man to man with dad. To say HE was now your priority in your life, not dad.
Accept that dad has never been, and will never be, the dad you always wanted. If you jumped over the moon to please him, he’d then ask you to jump a planet!
Newly widowed at 54, disabled 3 months later, mum decided to have a moan that dad had died at 78. So self focussed she ignored the fact that my lovely husband had just died at 58. I snapped, and reminded her of this and told her to never EVER say that again, and left her house. Good counselling from someone impartial will help you through to a better life.

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@Stellar5 Hello and welcome to the Forum.

I can relate to a lot of your post as I care for my medically non compliant husband who is nearly 85 and much older than me. I have been trying to care for him since Jan 2013 officially but in practice several years before then.

I do think you need to get hospital staff ’ on side’ but at the moment it sounds as if he is not in a position to be discharged? I agree with Micheal that he may need the 24/7 care that only a Care Home can provide. My father was very difficult too and I am an only child. I had to disengage by writing to his GP Surgery and telling them that they had a ‘Duty of Care’ and I was not prepared to be ‘next of kin’. At the time my husband had just come out of hospital and I was not going to be bullied into caring for 2 vicious old men who hated each other. Thankfully I had a couple of friends who told me I was near a breakdown.

So I do understand how you feel with regard to your father. But yes, old people are VERY selfish and you are being manipulated. I realise counselling is not easy but I agree with BB it is definitely worth pursuing so you can disengage and have a relationship with your father that allows YOU quality of life. I wonder if it might be worth you contacting your local Carers Center? They can be a source of advice and support and I have a telephone befriender who has been a Carer herself. I know how you feel with regard to feeling totally alone.

Also I echo the suggestion to post on Roll Call. No judgement and a lot of empathy and support. We cannot promise an easy answer but often someone has been in similar circumstances and can offer some guidance or even just a safe place to vent. Been a total lifesaver for me.

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My husband apparently has ‘mental capacity’ and does not have dementia although I frankly am convinced he has Frontotemporal Dementia. I think you have to try and work out how to disengage but I totally get how hard it is. If he pays for Carers then it is up to them to do their job and it is wrong for him to expect you to step in. It does sound as if he does not co-operate he is not going to be able to live alone in his home.

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My heart goes out to you reading this, I’m so sorry your Dad is putting you in this situation. I can see the detrimental effect his behaviour is having on you.

I echo what others here have said. Counselling can help you to navigate the emotional minefield that is ‘being a Carer’, but also helping you to focus on and prioritise you.

Unless you disengage from your Dad’s manipulating and controlling behaviours, it will become overwhelming, if it hasn’t already done so. Easy to say and extremely hard to do, I know. But for your own health and wellbeing, I would urge you to disengage further before he puts your own mental health at even greater risk.

Your Dad has PAID carers. All the things you are doing for him, they are paid and have the time, to do. He is using your need for parental love and approval to get you to be his skivvy. But as you have already realised, nothing you do will ever be enough. Setting some firm boundaries with him (and not backing down from them) will help with this, and this is something a counsellor would definitely be able to help you with.

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Thank you all for taking the time to read my post and respond. It’s really just lovely to know that I’ve been heard, if that makes sense.

Dad’s still in hospital, but I was hoping that the intervention of the mental health team would help getting him to comply and engage with the staff who are just trying to get him well again. They agreed that he needed a review of the anxiety medication and discussed this with him, which he agreed to. They also said that they were going to make a recommendation that he needed more care and he also agreed to this. It’s a bit of a minefield really and I don’t quite understand how things work, which makes me feel even more adrift. Dad pays for his care at the moment - half an hour every morning - but would he not be required to pay for any additional? Or does the local authority have some duty of care?

Anyway, I have actually signed up for counselling. I have read a lot in the past few months about recovering from emotionally immature parenting, and I realise now that my behaviour really IS down to having spent my whole life seeking his approval, and he’s taken advantage of that. He’s not keen on me setting boundaries but I’ve been getting better at that. I still don’t like the fact that I have to lie to him in order to feel better about just having some time to myself, but I always feel as though his life is so much worse than mine that I can’t just tell him I’m not going over because I’m tired and I just want a night watching telly in my pyjamas and eating peanut butter out of the jar!! I just feel too sorry for him.

I’m going away this weekend to visit my husband’s family in London so hopefully that will help. If I’m not even physically here then I can’t feel obliged to go and see him. We come back on Monday and then we’re going away somewhere on Tuesday for a couple of nights with the dog. I just so desperately need some time out, and I know my husband is also bearing the brunt of all of this so it will be good for us just to be together alone and uninterrupted for a few days. My sister, who lives abroad, is coming over during that time and is going to visit him next Wednesday.

It’s just so hard to know how much is too much in terms of meeting dad’s demands, or even just being there for him.

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I am not that good on benefits frankly but it might be worth phoning the helpline available through the site. I think that if a vulnerable patient is discharged with a ‘care package’ then it is free for 6 weeks? This was the case back in August 2013 when my husband came out of hospital after on an acute on chronic brain heamatoma. But yes, long term he would be expected to pay for his own Carers, if he has savings above a certain level. If he has ‘mental capacity’ then I do not think he can be MADE to accept more Carers but if you can get the hospital staff on side, and make him realise that this is the only way he can continue in his home, might that work?

I had similar issues with my late father. He DID NOT want Carers and although we managed to get him a 'free for 6 weeks ’ Care Package, he often would not let them in. He wanted me to do the caring such as putting eye drops in and shopping and sorting medication but I just could not sleep walk into doing this for him. TBH I mourned the father I wanted but never had, rather than the one I got at his funeral so I understand to a degree, you wanting his approval still. But YOU and your husband deserve a life too.

I hope you enjoy your time away. Remember he is getting 24/7 care so please try to relax and have a break.

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@Stellar5 Welcome aboard! First of all, we never compare what people are going through here. What might seem trivial to you might feel impossible to one of us, and vice versa. We’re all different, and we have different limits. It seems to me you’ve been dealing with your Dad’s childish behaviour since you were small, and in all that time you’ve been trying to gain his approval, where all he’s ever wanted is your compliance.

Bluntly, it’s time for you to forget his needs and wants, and to think more about your own. As others have said, he has access to all the support he needs: so why is he demanding that you do it? I called his behaviour childish: it feels like he’s playing with you as he would a toy.

So, just to be clear: you do not have any duty of care to your father. None. That is the duty of the NHS and Social Services. You could walk away right now and he’d have no right to demand anything of you. It would be a good thing for him to be made to understand that, but that is going to take some strength from you. It might be easier now, while he’s agreeing to external support.

Have a good break and think about nothing to do with this until you come back. Phone off - checking only when you want to just to make sure there are no real emergencies. See how it feels. And then decide what you want to do about it.

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Thanks @selinakylie, I did speak with dad prior to his most recent fall and said that he needed more care and that he was going to have to consider it. He did actually agree to it, but then of course he ended up in hospital. In a way I was glad because at least there they can see the extent of his illness. He’s incredibly frail, almost skeletal and they can see how he struggles with his breathing and the fact that he keeps having panic attacks. In a way that takes some of the pressure off me because others can also see how complex his health issues are.

Before this episode, I’d managed to get some boundaries in place. I would go over twice a week on an evening to make him a meal and spend some time with him, although invariably I’d end up running errands for him, and then I’d help him to settle down for the night. Then I’d do his shopping for him on a Sunday. I’m just scared that as he’s now even more needy that it’s going to go back to me being at his beck and call all of the time.

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Hi Charles, thanks for your welcome and reply,

I’m hoping that some counselling will allow me to get it into my head that I need to make myself my priority. It’s almost as though I know that in theory, but putting it into practice after 48 years of learned behaviour is really challenging. My husband seems to think that I should just be able to walk away, but to me, to do that would be almost cruel, and I’m not that kind of person. I believe deeply that we should all try to help others who are worse off than ourselves, so that makes it difficult for me.

I do think that I need to learn how to find some balance in my favour, and hopfully getting more support for dad will enable to me to do that. I just wish so much that he would see that. He does say to me from time to time that he understands that I have my own life and he doesn’t like being dependent on me, but in the next breath he’s asking me to do menial things for him. And I don’t know how much is that he actually can’t do them for himself, or how much is that he just wants me to run around after him. That’s the difficulty I think, and what leads me to being taken advantage of.

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Do not think that they won’t send dad home until he’s properly ready. They just want their beds back. Prepare yourself for a possible battle, over this. You may have to refuse, in writing, to do anything further, at all. Get your husband to play his part, saying it was IMPOSSIBLE for you to care for dad.

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I totally agree with BB. Worth looking up ‘Dangerous Discharge’ as this happens a lot in my area.

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I agree with @Charlesh47 . You have no duty of care. He is in hospital and they will need to work with social services.

I will be honest with you. My father had mental health problems all my childhood - he was not diagnosed but I think he had a personality disorder and he was selfish and mean all my childhood. It sounds like your father also treated you badly.

This has left you like it did with me with alot of unhealed wounds that it took YEARS of therapy to sort. Being a wounded healer is very common - I know you say that you feel you must help but I feel that this is a result of your wounds and it’s not healthy to continually be in a situation where you are being abused and disrepected. Sometimes we actually put ourselves in old abusive situations again and again and again because we are unconsciously trying to create a better result than the orginial trauma but this never happens. PLEASE PLEASE PLEASE walk away. Tell the officials that you have your own mental health needs and you can’t cope and you will not be taking any responsibilitity. Then block their numbers and block your fathers.

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Hello my name is Jackie. You say your Dad has carers to come in and attend his needs. They dont get paid for doing nothing. So why can’t the Carers make your Dad something to eat? And do the housework like you say. You are not your Dad’s unpaid skivvy or carer. You are his daughter. I think his demands are unreasonable and unfair. No wonder your husband tells you to tell him to eff off. Someone else would’ve snapped and told him so. Why should you feel guilty? You are right for putting your own needs first. Old people are very difficult to deal with. There will be a time when he won’t always be in control and thats the way the cookie crumbles. Sending love and hugs to you. Stay strong my love xx

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I can completely sympathise with your situation. Mine is sort of similar but unlike your Dad, my Mum was and still is wonderful. I’m the least favourite child but that’s another thing completely.

I fully understand the feeling guilty bit because I feel it despite me doing everything for her. There’s pangs of guilt if and when I have to go to work or leave the house.

All the others have given you excellent advice but I just wanted you to know you are not the only one who feels guilty. You need to do what is best for you. Best wishes x

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Hi I really feel for you stella. I am a Former carer now, so i know that your going through a bad time. My Late hubby who passed away two years ago & myself used to care for my late dad for 7 years just after we got married. He was also an Alchoholic & also had copd as well. We were treated like slaves!! To be honest i think social services need to be kept informed of what is going on. also if you have a favourite cousin or a close Friend who you can talk to. Also call a meeting with you GP, & the Doctors at the hospital so everyone is made aware of your situation. Be strong & try & keep going best wishes Amanda

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Firstly, we all feel guilt Stellar5. Your dad is manipulating you but he is also very frightened by the sounds of it; “It was a struggle even to get that far as he refused to see them until I offered to be there when they visited” with the ‘loss of independance’ hits fast; that means ‘change’ and it’s a big adjustment going from being able to ‘move’ to not being able to move like he did. From one minute being able to do stuff to the next being totally reliant on you for stuff. You say your relationship isn’t great; and he gets belligerent with you. Then try to sit and talk to him about how accepting help with physio is the road to independance. If this doesn’t work then grab some information on physio rehab etc; and write him a letter and put it all together and leave it with him; just before your visit is over. That way he is left in his own time to review the info and read your letter. It takes time to adjust. I’d say keep up the pretence of ‘college exams’ etc till he shows a change in his attitude towards you. Otherwise he will contanstly demand you to drop everything and run after him. He may be your dad but he doesn’t get to ‘‘control your every movement’’ which is him having some kind of power over you. By getting you to ‘drop what you are doing’ and ‘go to him’.
I would suggest that if the carers are not around to empty his commode bowl and it needs emptying then empty it. He needs a clean commode.
He has capacity and is able to make decisions for himself; then you need to specify that in your letter. You need to specify that if he gets belligerent then the visit ends. If he continues to disrespect you then the visits will stop. You are not there to be verbally abused you are there because you care about him and to give a helping hand. You need to explain his options to him that accepting help means more independance for him in his current situation. If he doesn’t it just means things and his situation will become more difficult for him. As the more he ‘resists’ help the more unhappy his sitaution will be. Specify this in the letter. Change can be frightening as it takes away what we are familar with doing. Just like ‘caring’ is a change in your lifestyle. It’s hard, and frustrating. Time is the greatest gift you can give your dad Stellar5.

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Hi all, apologies for not replying sooner. I was adamant that I was going to have some time away (first the trip to London, then our few days away walking in Yorkshire) so that I could just focus on myself and not think about dad.

Easier said than done I’m afraid. My husband and I were out walking in the hills yesterday (one of my favourite things to do) and I checked my phone and saw I had a missed call and voicemail from dad. I decided to leave it until I’d finished my walk. Later I checked again and there was another missed call and a voicemail from an unknown mobile number.

About 6pm I had time to listen to the messages, and the upshot of it is that dad’s being discharged today! The first one was from him and the second from a member of the discharge team! I phoned dad, and the first thing he wanted to me to do was to go back home so I could take him something to eat as he was “starving and in pain”. I told him there was no way I could do that as I was about an hour and a half away from home. He sounded a bit huffy and said that he would phone his neighbour and ask him to sort it.

I phoned my mother in law who works in the NHS as I was just at my wits’ end and she said that she’d phone the ward and call me back.The upshot of the situation is that they’ve done all they can to try and get my dad better but he’s refusing to get up and move around, so there’s nothing more they can do. He has capacity and he’s said he wants to go home. He doesn’t want to go into rehab. He’s agreed to carers twice a day but nothing more.

I just don’t need all of this. I’m going to go and see him tonight and say that I’ll call in twice a week like I did before but I can’t and won’t do any more than that. He’s made his choices and he’s going to have to live with them. It makes me so angry that I’ve done nothing to deserve any of this. He’s just an incredibly selfish man.

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@Stellar5, so sorry that what should have been a relaxing and pleasant break for you has turned into a bit of a nightmare with regards to your Dad. Good on you for holding firm and not rushing back from your break early.

As difficult as it is, if he has capacity and does not wish to co-operate with regards to getting himself more mobile, then he has to live with the consequences. He will have to make do with the carers going in twice a day and cannot expect you to just drop everything to go round there.

The hospital should have made sure that he has a care plan in place before saying he could go home, it is their responsibility not yours.

Good luck!

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