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.

OP - stop beating yourself up! What you are doing is amazing. You are doing the very best you can and trying to hold down a job at the same time. You must be exhausted.
This brings back memories of my grandma, who refused to go into hospital with terminal lung cancer. My mum never told her she was dying. My mum was her sole carer for six months and an only child. However my Grandma had a big family and my mum didn't make it easy for herself, pushing everyone away who offered to help. I remember a lot of arguments. It definitely impacted on our family and my brother was only about 10 at the time. Looking back the stress got to her and later she had some sort of breakdown.
For that reason I have resolved to never let that happen to my children. I can well understand the terror of not wanting to go to hospital but I would insist on carers so the pressure wasn't entirely on them.
Sometimes it can work but usually only when you have lots of people pulling their weight equally - a lot of the time it is horrendous and can breed resentment and anger when it falls to the same person all the time.
In your situation your sister isn't listening to you. Let's hope her husband makes her realise you can't go on and on like this and you need help.

Each one of you in the family has to make the best choice they can send these can differ between family members. I absolutely understand your wish for him to have care either at home or in hospital. I also understand his wish and that of your family for him to be home. You will all need to be understanding of one another. If he was receiving care or in hospital presumably your family would feel just as bad as you do now, but you all have to find the best way forward for you.

My mother kept my step father home and it could have had devastating effects on her health as she has significant health concerns that she couldn't manage well for the final year of my step father's life. It worried me so much watching this process and being unable to contribute in a regular way, BUT it means so much to her that she gave him that. I'm proud of her and happy for her that she's pleased even though it's not the decision I would have made. I'm grateful that she was able to pull her own health back afterward.

I am so sorry to read this. You absolutely have nothing to be ashamed of. I was a carer then a nurse and have worked in end if life care and I think that as a society we put the emphasis in the wrong place when it comes to end of life care and choices. We place so much stock in what the patient wants and how the patient wants to die, where etc...but it is the family who is bearing the brunt of the care if people choose to die at home often and it can be brutal, as you are finding.

You have reaching your crisis point, which is absolutely normal, and you need help. Your mum and dad can accept it or not but you need help. You should hopefully have a hospice and home team in your area which you should be able to access by phoning your GP, community nursing team or the hospice directly. Even just a couple of nights of care from them will help you to recharge. This isn't about your dad, it is about those who are living and will continue to live with the legacy of his choice to die at home.

Please know how you are feeling is not at all unusual and try to get help in place today.

Hospice at home that should say.

I'm in a similar boat to you. My father had a stroke just before the pandemic kicked in. I wasn't keen on him coming back to live independently but the rest of the family were so I bowed to the pressure.

It's been extremely stressful and a roller coaster of emotions for all of us. Myself and 2 other sisters are looking after my dad. He's extremely frail and is only now just starting to admit that he's not invincible and he will likely not get better.

I've gradually curtailed all of his professional carers because for the majority of the time one of us is there. There are a couple of days in the week where we can't do his lunches and for these days we have carers coming in. Dad wants to cancel these too because he doesn't particularly like strangers coming into his home.

The way we got round this is by telling him its an honour and a privilege to look after him but we need some extra help too otherwise we'll become ill. I've also told him it was a struggle to get anyone in at all so if we tell them they're no longer needed, we'll have to go through the same process with social workers again.

Its so hard. I hope it gets easier for you.

Nothing to feel guilty about and nothing to be ashamed of from where I’m standing.

You have honoured your dads wishes and that’s fine.

You do not give up your life for it though, you and the kids first, it’s not your job to do anything else. If he doesn’t want carets that’s fine, then he needs to accept he is putting a disastrous amount of pressure on your mum.

If I was you I would take a step back, you’ve done what you can now.

You're not a terrible person and you have nothing to be ashamed of. I hope you and BIL manage to persuade your DM and your DSis that you need support from the professionals. You cannot pour from an empty cup.

Mum constantly worries about being judged.

My mum was the same. My (severely disabled) gran had a home help for a couple of days a week, to do her shopping and her housework. Mum used to go and clean Gran's flat before the home help was due to arrive. When I asked her why she did this (politely pointing out that the home help was being paid to do it), her response was: "If the home help sees that the flat is dirty, she'll think your gran's family don't look after her."

Sending love. I would arrange carers and also get a future plan in place for your mum. Take care of yourself .

OP, I have been there. My brother wanted to die at home of a brain tumour and we all rallied round. After about 4 days we have up and fortunately local hospice had a bed. Now, in my NHS job, I am very very clear with families and patients who are wanting to go home to die. If it is literally last couple of days, it is usually manageable but when it goes into weeks and is 24 hour care, it is not reasonable on families and also on the person doing. With best will in the world, if you suddenly need pain relief in middle of night it is going to be quite a wait for a community team to appear. It is very traumatic and I think you just need to insist that you're mother allows carers to assist. If he is in final weeks, his care will be chc funded and you can normally get a few nightsits per week too.

Hello everyone.

Sorry I am working plus kids so no time to do anything else

I will be speaking to both mum and sister about accepting more help after boxing day as everything is arranged now for Christmas day.

I cannot thank you all enough for your kindness you really have made me feel better and not a terrible person.

I am so sorry for those who have been through this or lost loved ones. There are no words xx

I'm so glad your bil has got your back, OP. My best wishes for you all x

Well done OP.

You have to look after yourself.
Who will care for your children if you become ill because of this ridiculous load.

Your first responsibility is to your children, ahead of your father's preference.

Ahead of the preferences of your mother.

Your children come first.

So so sorry OP. You have nothing to be ashamed of. It's really really hard to care - and your's isn't the only family to reject help either because they don't realise how hard it's going to be and/or think that accepting help means they don't care.

It sounds like Christmas day is set now, but you have to set boundaries. You have to take care of yourself first, or you are no use to anyone, and your first duty after that is your kids. It's clearly taking a huge toll on you. Sit down and have a think about what you can reasonably do, discuss it w a friend or partner or on here to get your thoughts straight, and then tell your family your new rules, while advising them to take more care help. If you have to make up a health reason then do - but try and just tell em straight. They may make you feel very very bad as a displacement for their own guilt, but in their heart of hearts they will wish they were doing the same.

Good luck. Keep posting.

Hi
I need to post again as well I need to say this somewhere.

Dads still with us. My sister has been there since Monday mum still won't get help so after I left boxing day she coped on her own.
Dads got maybe a few days left and she called me to ask me to come stay New Year as " your sister deserves to spend New Year with her family"!!

I wont lie I was very abrupt and said what but I dont? I already missed out on Christmas day.

I said mum I actually don't want to be there when he dies. I dont want to see it or deal with my dads death but you have never given me a choice just assumed I should do my duty.
I have my DC anyway so cannot stay over and I cannot get childcare as their dad is working.
I feel shit all over again.
My poor dad has fought so hard but I dont want witnessing his death to be my last memory. I am so upset that I feel so guilty and angry that their choice has left me in this terrible position.

It is easy for me to say but don’t feel guilty. And don’t allow your family to make you even more unhappy about your dad than you already are.

Ultimately you have your family to worry about and care for. This does not take anything from the love you have for your folks but your priorities have changed.

I’m so sorry I can’t say anything helpful. I may be slowly sliding into this and as I live and care for them as well as working (instead of family) there will be no option.

But my heart breaks for you. There comes a point when help should be accepted as the pain can be too much for those who are too close to it. It may be thought of as the thing to do to ‘keep it family’ but not if it breaks those who are left.

Caring for/watching a parent die is an horrific, gruelling, soul-destroying experience, even without factoring in the caring responsibilities.

My dad has been 'end of life' since April. His needs are much the same as your dads. He went into respite in August but like yours wanted to come home. We have carers twice a day for washing/changing him but otherwise it's just me and my mum who is 81. I was signed off with stress at the beginning of November and am now taking a sabbatical (unpaid) until September.

My DD is doing her GCSEs so is not a small child but I still don't feel I'm there for her enough. I have no partner and no siblings. My best friend has been incredible but we're now in Tier 4 so seeing her in person is difficult.

I don't think anyone who has had to deal with this situation would argue against the case for voluntary euthanasia.

Oh goodness I've just read your latest update, thats so painful and so unfair on you.

You are doing your best and that will have to be enough. Do take care of yourself and your own little family and let them take care of you.

Are you getting any kind of hospice support?

Please don't think you've 'shirked' your duty. You've been a loving and supportive daughter. You've been present and attentive.
Unfortunately, your DM and DSis have asked too much, and made decisions on your behalf. It's so sad that your DF hadn't considered the difficulties his wish would create.

I feel so sad for you. Please try to hang onto positive memories of your DF. These last few weeks do not represent your relationship with him or your other family members.

I really feel for you and sending you big hugs.
I'm a nurse and cared for my mother inlaw, it was incredibly tough.
The hospice counsellor recommended a book 'The Selfish Pig's Guide to being a Carer'. It helped me a lot and made me smile too, I have it on my Kindle. Do have a look. Also think of how you will support your Mum when your Dad dies without wearing yourself out more. Thinking of you.

Thank you all so much.

Right now I worry that the anger I feel will affect my relationship with my mum and sister in the future.
Right now I am angry, resentful, heart broken and lost in some sort of grief while recognising that my MH is not on the healthy side.

Saying this stuff here really is helping as it stops me from saying things to those I love which I will 100% regret.

You have every right to feel angry but you shouldn't feel guilty. You have gone above and beyond what the vast majority of people would be willing / able to do.

How did your mum react when you told her you cannot come round on news years Eve? Wasn't your BIL going to have a chat with them about it all? Did that happen / have any positive effect? Are the direct nurses coming in to see you dad? Have you managed to talk to your sister about things at all?

I think you need to be very clear about what you are and aren't willing to do. It may be that you have already said your goodbyes to your dad, and that's ok. Your mums hand may be forced into getting carers etc but that's not a bad thing. Has your dad got a social worker you could speak to, or at least point your mum in their direction for extra support?

Hi Hairy

I told mum at the weekend I have DC for the week and reminded her today she just said "oh I forgot its ok I can cope alone"

BIL has tried but like me feels its fallen on deaf ears.
No social worker as dad is been cared for well and its end of life.
District nurses call in every day and are supportive but go with dads/mums wishes. They have said their re is to make the end as pain free for dad as possible.

I never thought I would wish for this but I really do want him to die soon. Its so distressing for everyone. He cannot get out of bed now so has zero dignity, luckily he is so out of it he doesn't realise. None of us are doing well through this but I am angry as I know we could have avoided this trauma had he can in to a hospice.

I will NEVER put my children through this. Its fucking cruel.

@LastRoloIsMine I really feel for you. Your Mum is in a terrible position but she and your sister are being very selfish, and not doing any of you, including your Dad any favours. I really hope for a peaceful end for your Dad, and I hope it comes soon for all of you.