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.

You're not failing anyone, you've gone over and above to make your father comfortable. Time to get tough with your mum and tell her she needs to let the carers in on Christmas day because youre not missing out on spending it with your own kids and you need a mental break from it all.

Oh OP, this sounds so incredibly hard. I’m not sure I have a lot to say that will help, other than I am glad you posted, your feelings are understandable and you need to get them out somewhere. I understand your shame as I’m sure I’d expect superhero proportions from myself in these impossible circumstances as well, but really you do not need to be ashamed. You are doing your best for everyone in an impossible situation. Wish I could give you a wee hug.

You have nothing to feel guilty about. Caring for a parent who is not going to get better is fucking hard - physically and mentally. I did it - but I was 23, had no ties, a part time job, and it was still hard. Try and make the best of a truly shit situation - small treats over Christmas; the odd chocolate, glass of brandy, try and get out for a walk. My mum died at Christmas and it’s the worst time in a way.

It won’t last forever. You’ll get to say goodbye and look after your parent when they really need you. And I know it sounds weird but when they have left, and the organising has been done, and the fog starts to lift, you and your sister will realise that you did a very good thing. Looking after someone who is terminally ill is a life changing experience. I can’t say I did everything right, but it was the making of me.

Have you tried McMillan nurses? They could help you as a family emotionally and practically. Would hospice care be an option?

Nothing to feel guilty about at all. Your feeling are totally valid. You are a brilliant and caring person to be able to continue to care so much and put your own thoughts and feeling to one side. Dying is horrible and messy, not neat and tidy like everyone seems to think.
Sadly this time will pass and you will be able to grieve at your own pace. It is a life changing situation you’ve found yourself in, just take it bit by bit and afterwards try to talk to a grief counsellor.
You are stronger than you think. 💐

I don’t think you are terrible, you are doing more than I would be probably.
I dont think you have anything to be ashamed of and I think you need to look after yourself as well. By doing what you have done you have allowed your family to turn away the carers, who could have been a huge help for all of you. I think you should try and revisit the carers issue with your family and make your continued help dependent on having outside help too.

Thank you for the kind replies. I really don't deserve them.

I have to spend Christmas day with my parents as there is nobody to help mum and she's in her 70s and I really was never given the option of not doing it.

My father & mum will not accept any carers. I pushed for a hospice at the start but was overruled.
Tbh we didn't think he would still be here 4 weeks later but he's tough as old boots

I know I have to get on with it and what I feel really does pale in comparison. I will with luck have many more Christmases with my DC but its been such an horrendous year for everyone I just wanted to have at least 1 decent day.

I really am having a pity party for 1 today!

First of all big 💐 for you.
You are failing no-one. You have done what your mum and dad wished for. You probably didn’t realise he would last this ling.

This happened to my FIL. He came home to die, doctors said it would only be a day or two, but he hung on for two weeks. Husband has 4 sisters and they all stayed in the house for the two weeks. They had Macmillan Nurses, who were useless (long story). His father would not allow them to do his personal care, nor allow his daughters or wife. My husband did all of that. He would make a great nurse. I am proud of him.

But they all say now that it was the wrong thing to being him home and he should have gone to a hospice for professional care.

Anyway, you are i. This situation now and you are doing your very best. It can’t be too long now. Can you persuade your father to allow the carers to do their job? Maybe tell him the care is taking a toll on his wife and she needs the carers to help her care for him?

Such an awful time for you all, xxx

Please, get through this week, then tell your mother you will not be returning to do care. Tell social services. Tell the nursing staff. Tell your sister.

I am ill with a chronic condition as a result of the stress I was under when DF was ill. I lost my ability to sleep properly, have constant aches and pains, am unable to think clearly much of the time.

The strain you are experiencing can stay with you for a lifetime. You owe it to yourself and your sister to refuse. They will have to accept nursing, or hospital or hospice care. You are making yourself ill.

Because this won't end with his death- you will still have your mother to care for. Please be careful.

OP you're not failing anyone, you're not a bad person. This is an incredibly tough situation. The TV version of saintly dying person being tended by devoted relative and it's all lovely and calm until the beautiful end was clearly written by someone who's never had someone die of cancer. Even if you were a nurse, or a carer, all bets are off as you're related and the emotions are there. Be kind to yourself, do what you can, take a break when you need to.

As an aside to anyone reading this, if you die of something nasty, please don't refuse to have carers tend you and insist your poor family have to do this, it's cruel.

You have absolutely no reason to feel ashamed, and you are doing your best in circumstances which are being made so difficult for you by other people.

My father died last week. But he was in care so my role was just to be at his bedside for the last 10 days. That was exhausting enough, never mind what you are doing. My heart goes out to you OP. Please try and make some time fir yourself and your dcs. This is so hard. X

You have nothing to be ashamed of. You were the only one who could see what would be needed to make possible what they wanted, you've tried and done all and more. Feeling guilty and stressed and torn - that comes with the territory.

You are right to work out what you can actually do and then draw a line and say, no more. I hope that your parents will be able to see that they have to accept outside help whether at home or in a hospice.

When my father was dying, my mother was hoping to get him home and had started making arrangements as she knew she couldn't look after him without a lot of help. Unfortunately a change in medication tipped him past getting home. But part of me has actually always been a little bit glad my mother didn't have to cope with him at home too. It was hard enough for her during his last weeks in hospital. My sister and I couldn't help because we weren't in the country and well in advance our parents had jointly told us to put our own children first. IIRC we arranged to travel at the end of February half term. My dad died 2 hours after I got there, seems he was just holding on until our mother wasn't alone.

As an aside to anyone reading this, if you die of something nasty, please don't refuse to have carers tend you and insist your poor family have to do this, it's cruel.
I second that. I know he is scared and suffering but he shouldn't take it out on those closest to him. The professional carers can do what is necessary and walk away without emotional involvement.

You have nothing to be ashamed of OP. I would feel the same.

Please try not to feel ashamed, you are not failing anyone. You had a realistic idea about how hard this would be, and how hard it would be to fit it all in with work and family responsibilities.

Your feelings are completely understandable. Other posts have said all the right things, I just wanted to add a different viewpoint. When my dad was dying of cancer I persuaded my mum it would be best for him to be in hospital at the end. My mum wanted him at home, my dad had refused to even discuss it and then when the cancer spread unexpectedly to his brain he lost the power of speech and we could no longer ask him.

Although he was only in hospital for a week, I have always regretted "leaning" on my mum to admit him. I truly believed it was best for his pain management and for my mum, who is the kind of person to sit a round-the-clock beside vigil. But my mum's guilt and sadness that he was not at home, has never faded. It's been eleven years since he died.

So, I don't think there is a right decision to make. The one you made is exceptionally hard on you - but you will at least be able to look back and know you carried out your dad's wishes. It's worth something, believe me.

I'm so so sorry I have nothing to add but wanted to send you the most enormous virtual hug and say that you are a fabulous human being and when this is sadly all over you and your sister will have the knowledge that you did your best for your parents. I hope your mum relents to carers though. Am so sorry lovely xxxx

I'm helping care for my parents both 93 and very frail. My mum nearly died last week but an antibiotic drip did the trick. We have carers coming in and my parents are grateful.

If they turned them away I'd be furious. Your dad is being so selfish. Does he think of no one but himself? What about your poor mum? What about you?

Don't feel bad about your attitude. It's perfectly reasonable.

Your feelings are absolutely justified. Obviously you love your father, but being a full time palliative carer for him will understandably be stressful.

I was a district nurse for many years and nursed the terminally ill at home.
I would never ever choose to die at home.
I have seen many families given unrealistic expectations of how it will be, and subsequently struggle.
What a burden to place on family in your final days and weeks. It must taint your memory, and dare I say feelings about your parents that will stay with you. I would also worry about your mother's expectations of you longterm meeting her needs going forward.
Completely unfair to put this on you.

Please put your foot down and arrange carers . Spend Christmas day with your children

I lost my father to cancer and there is no way knowing in the last few weeks how much longer it will go on for. My father also refused to leave home but following advice from a doctor, we moved him to a hospice.

It was still incredibly difficult, one person in the family staying with him constantly and I was 9 months pregnant too, ended up having the baby early etc., it was all very difficult.

If you are at the end of your tether I suggest speaking to your sister again. It is not really on for your father to “refuse carers” at home. How does your sister feel about it? It sounds like she really needs a break and your guilt is towards her? Unfortunately, you can’t always listen to the person dying/your mum as this affects everyone.

Sorry to hear you're feeling like this.

My mum died 10 years ago of cancer. Like a pp she was in a care home and that was tiring enough. It sounds terrible but the last few days, I just wanted her to die so it would all be over. Watching someone die is horrible.

Please be firm and get the carers back. You do not have to do this, you should be cherishing the time left not resenting it.