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.

Are you sure they wouldn't reconsider the hospice? Maybe they realise themselves now that the reality is too much?

I have very recent experience. My mum died in a hospice and it was lovely and dignified and peaceful. She had been at home until days before she died and to start with I wanted to keep her there and look after her. It was her decision to go to the hospice and a part of me wanted to keep her with family but I very quickly realised it is not so easy. She became completely unable to move herself even in bed and was starting to get pressure areas. She couldn't get out to the toilet. She was terrified of being undignified.

After she went to the hospice she was confused and distressed at times and we would not have been able to handle that at home. In the hospice they knew just how to adjust the meds and keep her comfortable.

I am surprised you can even manage it physically without professional help if he is bedbound. If he isn't moved with correct techniques and equipment you will end up hurting your back.

I really do feel for you.

I was pleased to be able to do a lot of care for my mum in her last few weeks. It made me feel useful and close to her but a) I have some professional background b) she was completely reasonable in what she wanted and not pressuring anyone c) she went to the hospice at the right time because I know we would not have coped with how bad things were right at the end.

It's wrong for anyone to be forced into doing this against their will and will ruin your memories of your dad.
Please ask them to reconsider the hospice or at least don't allow them to dismiss the carers. Say that you are not able to do care tasks without proper help so you need the carers to do it.

Your mum and your sister won’t accept carers as long as you continue to do this. You have to say no and mean it.

It’s not easy, I know. My mum died of bowel cancer in 2019. We had a difficult relationship and I am / was an only child. She had no other relatives and I have health issues myself and I also have a child with complex needs. When she received the terminal diagnosis she said she wanted to die at home. For a while I did what I could - visited twice a day, morning and evening, helped to wash her, got her an evening meal ready etc and she agreed to have carers twice a day (reluctantly). However as things progressed she was ringing me all hours of the day and night expecting me to drop everything and go round - for example, her inflatable bed (for bed sores) had an alarm on it and it would go for off at 4am and she would ring me, or she would get out of bed to use the toilet despite having pads for her own safety and be unable to get back to bed. Very sad etc but just too much for me to cope with (I have Addison’s disease, lupus, sjorgens, asthma etc - I’m disabled myself and couldn’t function)! She refused any extra help and wouldn’t go into a hospice. She told her neighbours how awful I was not helping more etc!

In the end as awful as it sounds I just stopped responding to her calls straight away. I would leave a few hours and what actually happened was that she ended up having a terrible explosive upset stomach in the early hours of the morning and she messed herself everywhere and couldn’t get back into bed. She ended up having to contact her neighbours to help her and then waited for the first carer of the day at 10am. It showed her - and everyone else - that it was too much for me and I just couldn’t do it anymore. I did feel very guilty but I was at breaking point.

The next day she allowed them to do a care assessment and she was moved to a hospice.

I would be lying if I said I don’t feel guilty sometimes. Maybe I could have done more. The hospice wasn’t perfect either. But I did what I could, to the point I was breaking myself trying to do it.

People who judge you don’t understand unless they’ve lived it.

Please look after yourself and lay down some boundaries otherwise you will be doing this for your mother next.

I'm never doing this to my child. I now completely understand why my mother insisted she die in hospital rather than at home, when most other people seem to express the opposite wish.

I'm adding another voice to the overwhelming consensus of this thread. Your parents are being most unfair. And your feelings are entirely natural and understandable.

You have nothing to feel guilty about 🌹🌹

You haven't failed anyone . I have sat with dying people (I worked in a children's hospice) and it is incredibly hard and draining to watch, I hope your family listen to sense and have carers back in for everyone's sake not least because they will be able to tweak your father's medications to make him as comfortable as possible.

Yes, please don't feel ashamed. What an impossible situation you are all in. My Dad was terminally ill at home over Christmas, it really is tough isn't it. What helped in our circumstances was some overnight support from Marie Curie. Not sure if it's available where you live, but just being able to rest overnight made such a difference. Do you think he would accept someone just being with him overnight as a compromise, rather than carers thought the day?

my heart is with you all, please don't feel guilty, I was in a similar situation when my Mum was dying at home, I was told by the health care professionals it's the best thing to have carers, and then you can spend quality time with your Dad. I'm so sorry you're going through this xx

The fact that you are feeling guilty is proof enough that you are not a bad person. There are a lot of hypocrites that make themselves out to be martyrs when it comes to looking after ill relatives; with their 'holier than thou' attitudes. You aren't one of those and I implore you to pat yourself on the back for having the bravery to speak of your feelings .I also believe strongly that you have absolutely nothing to feel ashamed about. I am sorry for you what you and your family are going through and I wish you all the best.. Consider yourself hugged.

I am a bit further along from a similar situation, DF died of cancer a few months ago, it was very quick from diagnosis and DM was adamant he came home, she realised very quickly it was too much and would regularly phone me in tears but she would not accept help.

Some of the things we had to do will never leave me, the images keep me awake now and I am now in the stage of trying to support DM through her grief and I haven't even really had a chance to even come to terms with his death yet I don't think.

You have absolutely nothing to feel guilty about whatsoever. Be kind to yourself.

I wish he had gone into a hospice and we could have tried to just have the time with him instead.

It's bloody hard work, both physically and mentally, providing end of life care and you are justified in feeling the way you do. I think you have to force the issue regarding the carers, they can come in and deal with all his personal care needs and you and your mum can be there with him at all other times. Please try to make you parents understand that this is a far better solution, than relying on family to provide care.

My mum died of cancer when she was just 60. She wanted to die at home but I just couldn’t do it. She had lung cancer and the level of care she needed was beyond what the family could provide. She passed away in a wonderful hospice with the best support and pain relief. I felt guilt but also knew it was right for her. I am so sorry you are going through this. Please speak to his doctors or Macmillan.

I think you have done amazing to get this far. Looking after people at the end of life is physically and mentally exhausting. Would they consider care at home from the local hospice? Many hospices offer this service. Also Marie Curie offer night sits, which may help you. The GP could assist you in referral to these services. Please try and spend some of Christmas with your children if you can.

Sorry you are going through this, I went through similar with my grandad a couple years ago, he had several strokes and was then diagnosed with stomach cancer and given weeks to live, for a while he turned away carers and I was going into him as well as other relatives, it got to the point where he needed care in the night and at this point we had to be tough with him, if he wanted to remain at home he would have to accept care, eventually he agreed to a live in carer, at this point he was bed bound. He lasted a few months (a lot longer than we expected) and he got his wish of dying at home. The live in career was lovely and McMillan visited him often too, it took a huge weight off me and the family knowing he had 24 hour care but the only way would could do it was by all agreeing we would not care for him any longer (we all had our families and jobs to consider), it wasn’t easy.

I can't add anything to some of the lively advice and posts here but I just wanted to say you sound lovely, so caring and despite how you feel, you sound like you're being a wonderful daughter to your poorly dad.

I hope you are able to get some proper respite soon and I'll be thinking of you

No need to feel guilty or ashamed at all, you’re dealing with a very difficult situation for all involved.
We had a similar situation earlier in the year with a family member who’s dying wish was to be at home and refused help and carers.
In the end we had to insist. We had help from MacMillan nurses ‘hospice at home’ carers, please do get in touch with them if appropriate for your situation they may be able to help.
You should not have to cope with this. You can also get in touch with adult social care for help.

I haven't been in your situation but I can only imagine how much strain you are under. I just wanted to wish you well.

I can’t add much to what the others have said but be kind to yourself, rest wherever possible & keep talking, you are all having a terrible time

you have nothing to be ashamed of. I can only echo other posters, services are there and if others in your family choose to deny them that is their choice, not yours. Your father had the opportunity to die a dignified death in a hospice and he refused it. Why should you be ashamed?

Do not feel guilty you have not failed as a daughter.
When DF was given a few weeks to live we thought we could manage at home. It soon became clear we couldn't cope and he was lucky to get a place in a hospice.
His last days were serene and comfortable. He was looked after by expert staff leaving us, the family free to spend time just keeping him company and not having to worry about bedpans etc.
It really was the best option.

The problem with refusing help as your parents have done is the huge burden it places on the adult children. Instead of saying goodbye to your dad you are stressed and run ragged. Often it all falls apart at the end and the sick person ends up in hospital which is NOT the place to go and die. I urge you to try and get him to a hospice.

I think just before DM went to the hospice we had all started (her included) to feel quite unsafe with her being at home.

It was an incredible worry all the time what might happen next. She had a fall out of bed in the night once and another time was sick all down herself which was very hard to deal with as she could not move herself to have the bed changed. We had care calls but it was the responsibility outside of those times especially at night.

It was a massive sense of relief all round when she went to the hospice and it felt we could have quality time just to be with her emotionally not giving personal care which she was very uncomfortable with any of us doing. I can just remember thinking 'thank God she is safe now' and being able to have a good nights sleep for the first time in weeks.

I have a long and complicated story of caring for my mum till the end of her life, all I will say is you have to step back and take care of yourself. It isn't selfish it's self-preservation.
I refused for a long time to admit I needed help and it led to my mental and physical health suffering. When she died I think my body went into some kind of shock and I could barely function for the exhaustion I felt.
Insist that he has carers, go home and spend Christmas with your children and let yourself be a priority.

OP please don't feel bad about how you feel. I've been through this in part, but in my case my dad had carers coming in. My mum used to threaten constantly to send them away and actually did so sometimes, but at least we had them most of the time. I can't even begin to imagine how hard something like this must be without carers to help. It places a very heavy weight on your shoulders.

You need to look after yourself in all of this, so please don't feel guilty.

So sorry for what you're going through.

You absolutely deserve the kind replies and the many more that I’m sure are still to come. This ask of you is beyond the ‘duties’ of a child to their parent, I’m sorry you are going through this. You must think of your own wellbeing, physically and emotionally and I’m in agreement that your dad’s end of life care should be supported (overtaken?) by professionals. I know he has asked for family only but I’m guessing he can’t see the toll this is taking on you all? I’m keeping everything crossed for you that your family will agree to the support your dad needs at this time.

It’s also underlined to me that I will never place this expectation on my son. Wishing you courage in these coming days.

You love your father, you want the best for him, do not feel bad about this at all.

You have every right to feel the way you do

I haven’t been here yet but I will be sooner than I’d like.

You should have been part of the decision on how to proceed. Do not feel guilt, dont worry about feeling anger and resentment and do try to look after yourself.

Things need to change. It is excruciatingly hard on you all.

With the kindest of thoughts and wishes.