I just can't do this anymore 😔

[Totallybannanas]

I've had so many issues with df. He is terminally ill. For the last 3 mths he has convinced me that he didn't have long and life was slipping away from him. I went sick, visited daily and cooked, cleaned and did his meds and ran around for him and was basically his company and comfort. We had carers come in but they never did anything. He wanted be to stay the night which I did initially, but didn't get any sleep. He then went to the hospice for symptom management, again convinced me he didn't have long and he wasn't well. He then refused to leave hospice, but they eventually moved him into a nursing home. He wasn't happy, he had only been there 2 weekend I had to take him to A & E. 15 hours overnight and eventually on the ward, they are now looking at discharging him again and he is refusing to go back to the home. He says he wants to die at home and I know he wants me to take care of him. I have no idea how long this will go on for. He texts me daily to get things, to come up. He doesn't like me leaving and puts lots of pressure and guilt on me. Again telling me he was really poorly and in pain. He has even started to put pressure on my brother telling him he is disappointed that he hasn't visited. The guilt tripping and pressure is too much. Even in the home he was messaging me he was in pain and having to wait. I just can't cope with it any longer.

Sorry for what you're going through, it sounds awful. You mention your brother, is he not available to help? What illness does your Father have? I know that you know there aren't any easy answers to this situation so it's going to require hard choices for you.

He has stage 4 oesophagus Cancer. It has spread and he had a stent to help him eat which he had blocked hence why he ended up in hospital. My brother works full time and his employer wouldn't give him any time. I work term time so have a few weeks before I go back to work, but I already feel burnt out by the emotional load. Even in the home, he's contacting me and expecting daily visits, even if he is sleeping. He doesn't like the food in the home, and wants me to bring him meals. I am already doing his washing. It's like he is making it harder, to argue the point of him going home.

I'm so sorry Op , it's relentless isn't it, going through the same with my parent as we speak. It's the 3am phone calls when all i can hear is rustling, I'm an hour away, so called for a welfare check , drove over and there was nothing wrong, claimed that they didn't call me.
It sounds awful but I keep reminding myself that it's not forever.

Kindly I think you need to step back. The home will surely do his washing? Mil is in a home and complains a lot about the food…. But it’s not bad, it’s nutritious and a step up on cuppa soup and cheese. I think you need to decide on boundaries and stuck to those. X

You’re right this can’t go on. I remember your other posts. You sound exhausted. If I remember rightly DF wanted to move into a care home and have someone look after him?

You need to remind him that you will be back at work soon also he can’t come and live with you.

Can you afford counselling to help you set boundaries? You need to be saying things like it was lovely to see you today Dad, tomorrow I have lots of appointments so I will see you the day after.

Can you get away for a few days before you go back in September?

It's not forever. It's likely the end will not be long but the waiting not knowing and guilt is awful when you stop your life for them but ultimately you can't continue to do that and often when you start your life a little then they go faster and actually that is a blessing long term. He has to go to the home. You cannot do food and washing so choose one. If he wants you to do food then it's tinned soup, bread and butter and custard / ice cream. That's it. The rest he can get from the home. (And actually that's stuff he can eat!) Get your brother to do every other day in the evening after work and you do the other day. Limit each visit to 2 hours.
People become extraordinarily selfish at this point. It's not he doesn't love you at all it's that his whole world has turned inwards and there's an inability to take joy in anything.
I'm sorry it's crap. Xxx

I remember your other threads OP.

Have you sat down with him and told him how much this is affecting you? You need to talk to him and agree between you some reasonable boundaries. Have a think about what you CAN manage (how many visits, whether you are willing to take him food/how often) and stick to it. Tell him you’re not able to be his full time carer.

I know this is tough, my own DF isn’t in great health either and would happily have me cooking for him/visiting him every day, but I don’t do it because I know how much it affects my own MH. I’ve had to make a conscious effort to take a step back.

I'm really sorry, op. I read your other thread.
My aunt did this to my (female) cousin and it really affected their relationship and remaining time.
I'll tell you what I told her -
Go back to work - even if pt/staged return.
Tell your dad ypu can't have anymore time off and point out he is being cared for by professionals. You cannot be at his beck and call.
If he is in pain he needs to tell the staff not you.
I know it sounds harsh, but he is being cared for.
My cousin nearly had a breakdown in the end - my aunts lasted 5 months.
Best wishes x

I think you need to drop the rope.

Have you had anything from Doctor/consultant about timescales (I know they are often reluctant to commit). Stage 4 is not necessarily an immediate death sentence. You could potentially have many months of this.

Tell him/discharge team that you will not/cannot be looking after him and that you will drop round for social visits only. If he wants to be at home then he has carers come in that actually do the work (if you are doing the caring then there logically won't be anything /very little for them to do as you are doing it all)

Switch your phone off during the evening/over night.

Establish boundaries and stick to them.

Talk to your brother and see what he can do/is willing to do. And its okay if he says he's going to do nothing.

I am so so sorry for what you are going through @Totallybannanas it is utterly horrendous. We have just been speaking to others in similar situations and it is so so hard.

We are just out the end of this and on top of the parent with significant health issues who passed we had to deal with a family member living abroad jumping up and down to make sure we were fulfilling her quite frankly bonkers expectations.

DH closed it down again and again and stuck absolutely to his guns delivering what was manageable and reasonable not what was sought from us. I am so grateful he did it was an incredibly difficult and stressful time and no matter how much we gave it would never ever have been enough.

Honestly learning to cope with the endless feeling of guilt and other people taking out their issues on you is the only answer to this. Deal with the feelings and do what you can would be my only go to advice from these situations.

I don’t think DH has even been able to grieve yet due to the fallout of the whole experience. Weeks later and his dominant emotion has been relief.

I agree, we got carers in, parent hates it but, my sibling and I both work and are on our knees. He will be ok with either going to the home or with carers. I also urge you to stop answering the phone, unless it suits you xx

Thank you, I just feel he has made this alot harder from the onset. He's never quite picked himself up and mentally he has really struggled. I dread the visits, all he does is moan and tell me he isn't a well man. Moaning about having to wait for meds, moaning about his pain. He thinks he is dying again, yet continues to eat and drink. He will say things like you may get a phone call tonight eg meaning he is gone. There are a lot sicker people on his ward yet you would think he was the only one. He seems oblivious. He's really feeling sorry for himself. He's just text me now, as he's still waiting for his suppository. He is very impatient, very anxious and very needy. He wanted to go into a home, to give me a break. But now he says I thought it would be less of a burden to you but it hasn't worked out. Yes, because you text me everyday! Give me jobs to do, moan about the pain, the food. Get me to do the washing, and now your food.

And yes the more you do the more he expects. I've told the discharge nurse I don't think he is safe and she agrees. But then I will probably be expected to take him back to the home 😔

If you’re not around they will arrange patient transport.

A few things jump out from your post. I might well sound harsh (sorry!).

Do NOT do his washing. The home will do it and much better than you to be frank. Its not going to make a real difference to anything if you dont. The world isnt going fall in if home does it.

Dont take calls ooh. He sounds self absorbed and quite frankly like a lot of old people very very selfish. As others say this could go on for months.

Go a few times a week. No more. Be cheery and I found with my late Mum that if she started moaning I would literally say in a cheeful voice ' are you moaning again?'.

You will hear the following phases over and over again if you havent already:

'I dont want to be a burden'
'I want to die'
'The food isnt great and the staff arent good'
'You dont know what its like. I am at the end of my life'

Many many old people have NO idea how to deal with their old age, they have no plans so when they become old they panic. Cling onto whoever they can and literally wont let go.

My Late Mum also said if she couldnt contact me then who? Siblings lived abroad and were uesless.

I shut down any fancy ideas they had as to what I needed to do which normally involved me spending hours doing something.

So what if his suppoistry isnt here. What are you meant to do about it? Ask the nurses.

I think looking back its all attention seeking along with a side of feeling scared that the end of life is near (it might not be!). My Mum didnt make any plans for end of life. She apparently just wanted to fall asleep one night and not wake up.

The guilt is horrendous I know. I wasnt there when Mum died although I did see her in the care home after she passed which was OK. I am glad I did it. I am not going to say she looked at peace but it was her time.

I mean this gently as it's so hard , was he always like this, if you've previously had a good relationship, then the dad you knew isn't here anymore and you have to deal with the person that is now before you. Please don't feel guilty if you have to pull back a bit, (easier said than done) but once he's gone, he won't know anything about anything, it's just you that will be left feeling bad but hang on to the knowledge that you really have done the very best that you can.
This makes sense in my head and it's how I try and deal with it all. Xx

Who is expecting you to take him home?

DO NOT DO THIS EVEN FOR A FEW WEEKS.

Have you ever tried to pick up someone who has fallen. Let alone the many many emands and the barking orders at you.

Kindly you need to live your life and protect your health. All the time you keep agreeing to be his carer at home social care will let you as it means one less on their books. In the nursing home despite his moaning he is safe and cared for and his condition is being managed. I know it’s so hard when it is your dad but you have done what you can do. If he won’t have carers he needs to go back to the home. Beware though even if he has carers at home he will still be on to you 24 x 7 as they won’t turn up at the right time / do stuff properly ( according to him ) etc.

Kindly you need to stop responding to his texts / phone calls. He is in a safe place and cared for. If it is him contacting you it means he is ok. Tell him you will only look at texts between a certain time as you are working / sorting your own life out and will not always answer your phone. Let it go to answer phone , deal with it later and you can decide on whether it is a priority. He is doing it because you are being guilt tripped into responding immediately. Tell him which days / time you will visit and stick to it unless the staff phone you. If he is texting you about a suppository he isn’t in his final moments Tell the hospital you can’t cope with him at home and won’t be able to look after him anymore. You have done your best which is admirable but it’s time to pull back a little to protect yourself. when he tries to guilt trip you with the “you might get a phone call tonight” just respond with “ it will be terribly sad dad” and move on.

As a former full time carer myself i know it’s so hard but you have to look after you - otherwise you won’t be in any state to do anything - remind yourself he is safe and being cared for so unless the staff phone you it’s not urgent and can wait and you deal with it in your time, not immediately.

My aunt basically took to her bed and didn't get up again.
Which was entirely her choice, but it put a huge strain on all of us.
I went every morning to give her meds and breakfast. My sister did the afternoon.
We also did hospital visits and test appointments.
But she kept falling getting up at night so she did end up in a home.
She was only there 2 weeks.
But we'd all run ourselves ragged bu that point :(

Oh god yes I have heard those phrases already. He says he wants to die so he isn't a burden but in the same breath he talks about making sure he eats and builds himself up. When I didn't go Sunday, he text saying it was his worst day, he was going down fast and could I come up. It's relentless. If he was more reasonable, I would try to care for him at home with the support of carers, but it's like the little boy who cried wolf. I don't know when he really needs me or not. My brother can't and won't do much. He only started visiting more when he went into he hospice.

You've got to try and harden your heart, of course his worse days are when you don't visit (they're not) . He will be in the same state of health whether you visit or not and I hate to say it but you will know when he's really nearing the end, all the while he's texting and calling he's fine.

I don't understand these comments. The old dad is dying of cancer and you lot are all saying to ignore him and treat him like a spoilt toddler. I guess all of you will choose euthanasia when you're old? BTW of course the brother should help, unless he doesn't want any inheritance.

Thank you, for you replies. It's tough mentally and emotionally. The guilt and manipulation is worse then the physical running around. I dread visiting, so if anything the pressure he putting on me is pushing me away.

Honestly? There's not much you can do and you need to fill your own cup first.

• Stop doing his washing, he's in a carehome.

• Don't answer all his calls, you can't be available all the time. If you need to, turn your phone off or periodically block his number/ignore his calls. The carehome will contact you if it's an emergency. You need time off to look after your own wellbeing. There will probably be missed calls and texts but you need that time.

• if he reports anything concerning about his meds etc - call the home to verify, to get their perspective on how he is doing. Call the home (not his mobile) to see how he's doing from the staff's perspective and may be chat to him too, you don't need to call everyday, call at intervals that feel comfortable to you. I can bet he won't say half that stuff in front of the staff. - I have a parent in a carehome and I have to have very, very firm boundaries with them because of how their illness presents and it's not easy, in the slightest, I call the carehome, my parent doesn't call me because unexpected calls from them are a massive trigger for me (again, this is part of how their illness presents). But I can't support them if I'm not looking after myself first.

• Visit because you want to, not because you feel you have to. If that means you don't visit as often, then you don't visit as often. It does not mean that your don't care, or that you don't love him. It just means you have a life to live. If he doesn't want to be a burden then take him literally and don't give him the opportunity to become one and be very firm with social services that you are unable to look after him, so if he won't go back to the home they need to find another alternative for him.

You shouldn’t be doing his washing if he’s in a home
Talk to the home in front of your df about his food preferences

When you’re back at work arrange for you to visit one day at the weekend and your brother to visit the other.
It’s OK to not answer calls all the time. If anything I’d call him once a day to see how he is but set the new ground rules with him. He’s in a care home so he has others to care for his daily needs. That’s why he’s there

If he was close to passing away it’s highly unlikely the hospice would have moved him out. So you need to prepare for how you can realistically cope when you’re back at work.

Your brother needs to pick up 50% of that responsibility.