So ashamed of how I feel can only say it here

[LastRoloIsMine]

I tried to NC as I am that ashamed but I cannot remember my password so will have to own it...kind of.

My father is currently at home dying of cancer.
He was originally in hospital as he suffered strokes/heart attacks but in the end there is nothing they can do so they gave us options.
My mum and my sister wanted him home as did he so I did all I could and sorted out carers and equipment. Hes been home 4 weeks.

This is the shame bit. I didn't want him home.

They send the carers away. My sister has virtually lived at my parents with me staying on the days I dont have my own children and its just so hard.
He is bed bound and needs round the clock care.
He wakes throughout the night so we sleep on the sofa to see to him.

I never wanted to do this. I knew how draining this would be on everyone and I feel constantly guilty that between my 3 children and my full time job I cannot be there more.
My hair is falling out I barely sleep or eat and the guilt I feel because I am failing my parents my sister and my DC is making me ill.

My family won't listen. They won't let the carers do anything because my father refuses so we have to.
We have spent the last 4 weeks just watching him slowly die.
I am not spending Christmas day with my DC as my sister is going home to her own children and so she should so I am there with mum and dad. No Christmas morning no gifts no Christmas Dinner which I know makes me sound like a terrible person and I feel like one.

I used to believe dying in your own home was the best way but now living it I would never want to put my children through this. I would never want them to feel this guilty or this stressed and tired. I would never want them to put me above their own children.

I dont expect anything from this thread I just had to get how I feel out as I cannot speak to anyone in RL about it.

I think it's outrageous they expect you to step up when you were opposed. They can't pretend they don't know what an imposition it is, and they sound very selfish to me.

I do agree about getting carers in so you can spend some time with your family. Why on earth should your children pay the price?

It's clearly a very difficult situation, but a hospice really is the best place. My mum went to one and the staff there were incredible. They really do understand what's needed.

for you. You're doing your best in a really shit situation.

My friend was cared for at home by her parents and it was incredibly tough. They did have Macmillan nurses coming in regularly though, could you somehow persuade your sister and Mum that this is a good idea ? Her parents were totally exhausted, not sleeping, it was so difficult.
My Mum was in a care home but I spent time caring for her there as she was dying, and that was exhausting enough as my children were small and I was coming home to sleep and going back in to be with my Mum. I am really glad I did spend that time with my Mum , but it was nowhere near as much work as you are having to do. Getting help from Macmillan would not be failing. I would talk to your Mum and sister, and also talk to your Dad’s GP, who could maybe explain to them that a little bit more help would make things better for all of you, including your Dad, as then you three will be more able to cope.
This sounds an impossible situation, I understand that they want to go by his wishes but he is an elderly and very unwell man, he isn’t going to be very reasonable or pragmatic. Macmillan nurses are amazing.
Don’t feel guilty OP, this is incredibly hard.

Oh Rolo, so sorry to read this. You have gone above and beyond.
I wish you could be his daughter again, rather than his carer.
Is it worth contacting his GP to say you are at risk of carer breakdown and cannot continue? Those are the magic words to use if you need help. Surely Macmillan and DNs are involved? Can you speak to them?
Sadly, if both your parents send carers away, then they cannot force themselves to come in. But you can refuse to assist. Though I'm sure you would find this option impossible.
In the very kindest, most sympathetic way, I hope for your and his sakes that he can go quickly and peacefully, before 25th.

I totally sympathise with this, my FIL died this year from cancer and chose to have care at home. It was horrible, and the atmosphere in the house was so depressing and chaotic, medical stuff all over the place. When he died, it took a long time for them to be able to get anyone to come out. If it was me, I'd choose a hospice. Having carers on hand all the time and knowing things will be handled for my loved ones would make me feel much more at ease. It was what he wanted so I respect that but I think it's much harder for the family. Sorry you're going through this.

I agreenwith @picklemewalnuts. My mum and I looked after my grandmother. My mum had a stressful year prior to this, and I am convinced to thisbdaybtgat the stress of it all contributed to my mum's dementia. The effects of caring can be devastating.

Also the dynamics seem tough, with your sister deciding she was having Christmas at home, thus leaving you.

I would absolutely reinstate the carers, with or without their consent. They are less likely to turn them away on the doorstep.

It's so tough this scenario. Glad you could vent here, and you are not unfeeling, uncaring, or worse than everybody else, so sound perfectly lovely and human to me. Xx

Op you cannot deliver round the clock care day and night. You need to tell your mum and your sister how you feel. You need the carers back in again, to do some of the intimate care, and to just give you all a break for a bit, you also could do with home hospice/district nurses coming in for medication reasons, many people's last end, especially if prolonged, can be quite tricky and they can become distressed, in pain and so forth very quickly, you need home hospice/a very responsive district nurse or to go into the hospice to manage this.

Not everyone knows where they are either, towards the end. I was against my relative leaving home til I realised he didn't know where he was anyway, and was so muddled and agitated, the hospice was fantastic for him, the medication given in seconds not waiting for hours, kind staff, lovely big bed, it was so calm and peaceful and he was able to go out on his own terms and in his own time. I dread to think what his unmedicated at home death might have looked like.

You do have some influence here, and I would refuse to do day to day care if they don't get carers back in, this could go on a few more weeks by which time you will all be so sleep deprived you won't be able to handle it all, please be honest with your family about what this is doing to you and how carers and home hospice and all helpers available are there to make this better, you are all not alone.

Please don’t be ashamed, Op you are saintly to have done this much -most people would not have been do unselfish. Your children are so lucky to have you. I really wish some of us could come and persuaded your mum to insist on caters. My own mother was like you and I am grateful to have known such a lovely and rare person.

I understand in covid times them not wanting to go to the hospice in case they can't visit, but not refusing carers (unless also worried about covid). He is dying anyway, bless him, and it's more important he have care and that you are not overwhelmed.

You do not have to do it, op. You can still make that choice. Spend Xmas day with your children. Tell your mum that you can't do it anymore, you are a single mum with a full time job. Your dad needs carers. Can you get your sister onside?

When my friend died at home, she wanted carers so that her family could continue to be family instead of carers. They could chat ,laugh reminisce and leave the other stuff to people trained to do it. Suggest to your mum that this might make the memories of the last days or weeks
happier for all, including Dad.

You have nothing to feel ashamed of.
People don’t turn into saintly mortals when they are dying. You’re allowed to be firm with your parents and tell them that they have to allow carers to visit, and for the community nurses to do referrals to Marie Curie sitting services. He can be visited and assessed by a community palliative care nurse ( referral through your GP)
Take care of yourself and your children.

This is really not ok, it’s fine for the family to make these decisions but not if they expect to dictate your entire life and are having this effect on you. I have been through similar with both of my, now deceased, parents who were resistant to going into a hospice but, once there, they completely changed their minds and the relief was phenomenal.

I've been a carer (professionally) and it is a hard job giving palliative care and it is 1000X harder when you love and care for the person being cared for.

Your family need to try to understand there is no shame in asking for that help. If carers are doing the heavy work such as helping with getting washed and dressed, using the toilet, eating meals etc then it frees the family up to enjoy those last conversations and time together without everyone being exhausted on top of being emotional.

Your feelings are completely valid and justified. It's tough being a single parent and having the care of your parents on top is even harder still. I hope you can all get the help that's needed.

You have NOTHING to be ashamed about.

I think you were the only one in your family who fully understood the implications of your father coming home "to die". I doubt that your DM or DSis had any idea that he would refuse outside help, or be such hard work 24-hrs-day, or (forgive me for saying this) that he would live so long.

He is being very selfish, but that isn't surprising because, poor man, he is in pain and is frightened. Most of us would be the same. My heart aches for all of you, including your dad. My dad actually died of cancer, at home, on Christmas Day 31 years ago. He had been hanging on by a thread for so long and my poor mam hd to watch him suffer - and that alone is exhausting, even without all of the physical work involved in round-the-clock bed care for someone terminally ill.

You are not selfish and have nothing to feel ashamed of. You are being realistic about this, which I think your D and DSis are not. If the three of you insisted, then he would have to accept carers and then all of you would be in a better state to cope with what you know is inevitable (and that includes him).

However, there is nothing you can do about it, unfort unately- I think it's one of these situations where there is no "right decision" - just one that you feel you can live with after he's gone, and your DM and DSis obviously need to feel that they have done what he wanted. I hope it isn't at the cost of your health or theirs.

The emotional pain you are experiencing, coupled with physical exhaustion means that you can't think clearly, but please, if you are able to get past Christmas, do as others have suggested and step back from your DF's care as much as you can. Your health is important, too.

Also, of course you must spend Christmas Day with your own children and you can carve out a couple of hours to see your parents. If your Mum can’t cope, then both parents will have to accept the carers or hospice (I strongly recommend the latter).

Oh OP I’m so sorry you’re feeling like this. You shouldn’t feel guilty, you’ve done so much already, you’re allowed to feel deflated and defeated. Just because you felt differently about your dad going home compared to your mum and sister it doesn’t mean that you’re a bad person.
There is support available if they would accept it but I think you should try and be honest with how you’re feeling if this may change their minds. Macmillan cancer support are amazing and will know exactly who to put you in contact with if she’s adamant carers aren’t the way forwards.
I’ll be thinking of you 💐

Everybody has already said all the good things but I just wanted to add my voice to the others and agree that you are NOT being unreasonable.

I’m so sorry you’re going through this.

Oh gosh I did not expect such a response!

I have read every post and you are all making me feel not so shit.

My parents are selfless people normally. Their whole life has been focused on me and my sister. Which is partly why I feel so terrible now. They need us and my sister is stepping up. She is just wonderful but she does have more home support than me and isn't working. I am a single mum working full time and the job I do is more demanding due to covid not less.

I have proffessional experience of caring for people so caring for dad is in a way not scarey and I know how to meet his needs. That said he's my dad and its somehow harder to be practical when I am connected.

I will discuss the carers doing more when I speak with mum and my sister tomorrow. I am not sure I have the strength to fight them on it as honestly the guilt is overwhelming.

I agree with others who have posted. Please dont put your family through this if you have other options. I wont be but 6 months ago I thought this would be what I wanted. I know better.

I completely sympathise and am in total agreement with you. It's unfair on you to put this huge pressure on and make you exhausted. I agree with contacting McMillan nurses. I agree with everything cptartapp says.

I understand all of your resentment and it’s awful that you will remember his dying with all of this angst. This happened with my DF, hospital basically said he was going home to die. My DM wanted him home and would have neglected herself to nurse him 24/7. I was resolute as hard as it was I insisted they accepted some care package and was clear I would not share all of the care. I wanted my last weeks with my DF to be spent with him. He had nurses come in and we did recruit other family members and friends to do shopping, some housework and some cooking. Of course we had to provide some care, but not all, we had time together, we also had time for our families.

It is very selfish for your parents to refuse all help. Typical, but not fair. Do you need to be there 24/7, who else can help with other tasks? My DF had treatment and lived 5 months not weeks. DM also needed a lot of support when he died, I couldn’t have done that if I had been too exhausted.

@UrghThisIsHard

Everybody has already said all the good things but I just wanted to add my voice to the others and agree that you are NOT being unreasonable.

I’m so sorry you’re going through this.

Oh hang on - just realised that can be interpreted either way.

You should not feel shame, you should not feel guilty and your feelings are all totally valid and reasonable and proportionate. You’re doing your best and you deserve to be considered here too.

You shouldn’t feel guilty at all - this is intolerable.

I hope your mum gets carers in for Christmas Day at least - you deserve time with your kids.

You have my sympathies OP...we did this for both of my grandparents and it's hard. For my gran, we did what you're describing.
Stayed on the sofa, around the clock care, I showered her and did her personal care. We did have carers help, as we all worded full time, so took it in turns and worked in the carers as when best we needed their help.

Towards the last two weeks we had carers from the hospice helping. They were free of charge as a charity, and they were amazing. They would phone everyday to see if we needed the extra help and if they had someone. We mainly had the help over night the last two weeks as we were all a mess from exhaustion. The night she died we luckily had a hospice nurse carer, which we are eternally grateful for, as her experience as a nurse was called upon that night.

I think maybe you need to be firm with your mum and say you're happy to help where you can, but she needs to allow the carers in to take some of the burden from you. And on Christmas Day I really think she should let you be with your own family and have the support of carers, even if it's just for half a day, as you deserve some time out and with your own family.

Speak with you GP about your hair falling out and other ways this is effecting your health.

OP I used to work in domicilliary care, and saw far too many families on their knees with exhaustion when caring for a relative who wanted to die at home.

I will never put my children through it.

And looking at this from another angle, imagine how tired and exhausted your Mum is. It's not going to be a bad thing to put your foot down and insist she accepts help. Can you talk to your sister and present a united front to them both?

Can you put your professional head on tomorrow? Even if just to say, you want to be a family until the end and not a group of carers? It’s always been my ‘go to’ way of trying to persuade people to let other do the practical care. You get to a family when it means the most, rather than emotional and tired carers AND still trying to be mum/wife/daughter/husband/son/dad etc.
Your dad needs care but he also needs his family.

Stamp on the guilt, you are a compassionate wonderful person.