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.

@CustardySergeant

Yes, Retiremental I'm an idiot. I'll keep quiet.

Not an idiot at all. It’s one of the reasons why so many people want to remain at home in these times.

Its not an easy journey, made harder by covid

why does your father send the carers away? This is hard for you

just because you are feeling guilty doesn't mean you don't care or let it show, don't be hard on yourself

when your time come to die you may find your dc are fine to be with you at home and they are not you so may have different feelings about this

stop being so hard on yourself

those of you talking about going into a hospice

some hospice are closing due to covid19 and where they are in the country and what tier they are under. Also the visitors to the hospice can be limited to two people and those two people can't change and must be the same two people each visit. This makes EOL care difficult if family are more than two people

You are absolutely not failing and you have nothing to be ashamed of.

You are trying to do everything you can and putting your own needs last. Good to hear you have your BIL onside. I wish you all the best. Be very kind to yourself, you deserve it, good luck.

I was very lucky when my mother was dying. I was asked so many times of I would be her carer, I'd get carers allowance etc. Every time I was asked I would say no, it is hard enough watching her die slowly once a week,never mind every day, plus my mental health is not good. Fortunately she had other people to help her.
The only built I had was being happy when she died. She was emotionally absent and a control freak
You have family who are aware that you are struggling. Use it.

Guilt not built. Fucking kindle!

** So glad to read your update and hope that with your BiL'd support you can get the support required.

Maybe if a professional says it they will listen.

Just wanted to add my voice to the many saying you are absolutely right. Sometimes people will accept this message from 'professionals' even if not from family.

{{{{hugs}}}}

It's not easy for anyone. You are doing a truly good thing in getting proper professional support. All the best.

OP, I know you didn’t know what you expected to get from this thread, but what you get from me is a big hug. Yes

Please please don’t be hard on yourself. I would want exactly the same. You must not feel guilty.

I’m so so sorry. You are in an incredibly tough position. I hope this is over for you all soon.

You feel what you feel - no need to feel guilty. Your parents are making this situation impossible by refusing care coming in or hospice.

Being at home is not always the best thing. I tried to care for my OH at home - carers coming in and out did not work, as they all did things differently and were never here when really needed. A live-in carer did not work as he needed two people to transfer and I could not be that person for health reasons. So he went to a nursing home where he had brilliant efficient and kindly care; and was able to enjoy visits from us all unstressed by caring responsibilities that we could not manage - quality time for us all, within the limitations of his illness. He died in the nursing home with lots of loving care, and all his physical needs properly met so that we could feel confident that he had all that he needed to make his passing comfortable.

Caring for someone at home under these circumstances is a very very difficult task, and you are not at fault to feel that something is wrong here. You know that with some proper professional input his care would be better and all your lives would be better too. There is absolutely nothing wrong with being concerned for your own well-being and that of your family.

I hope that he will slip peacefully away soon. And it is fine for you to wish that too.

So sorry you're going through this op.
It sounds so hard. Yanbu. Big hug.

My father died from motor neurone disease. He also refused carers. I moved back home for over a year shortly after his diagnosis as did my brother (we were both in our 30s but without partners or children).
We watched him suffer and die (along with my distraught mother) slowly and painfully (& terrified) for a year. It was horrific and hugely traumatising.

Your post made me cry as it brought it all back. You have my utmost respect and complete commiserations. It is so tough. I understand entirely. How you feel is absolutely normal. It is an almost unbearable situation. The experience totally changed my life.
I hope that your family’s suffering ends soon.
I’m sorry, I have no useful advice. It is totally crap.

You shouldn’t be so hard on yourself. Your situation sounds horrible. It’s incredibly hard to watch someone slip away without the 24 hour burden of caring for them too. My dad was in a care home for the last year if his life. He died there. We couldn’t have coped with him at home. Whenever anyone says they couldn’t let their parent go into a home I bristle. Those last few months and days are incredibly difficult and painful and if outside help is needed, take it.
I feel for you OP.
Don’t be afraid to speak up and tell your family this isn’t working. Nobody would blame you for speaking out. You’ve tried to care for him yourselves and you need more support. There’s no shame in that.

My own dad at end stage made some weird and frankly selfish decisions, but he was on morphine and he must have been shit scared. I remember my dad coming home to die after a gruelling period in hospital and breaking down on my mum asking her how much longer it could go on because I didn't know how much more I had in me and desperately needed a break. In truth I wanted it over by then.

It's absolutely ok to feel as you do. I hope after seeing all the replies on this thread that you feel able to say you want some time with your kids on Christmas Day and that the current arrangements aren't sustainable, you, your mum and your sister can't go on like this, he needs to accept outside help. And tell him rather than plead with him. Don't feel bad about it, unless he's been a tyrant all his life, there will be enough of the old him to recognise what this is doing to the people he loves.

So glad all these replies have been so kind and encouraging. I've nothing new to add except to say I'm thinking of you OP. I wish your DF as peaceful a time as possible and the same to all your family

I’m so sorry. You’re not a terrible person. I hope the conversation with your DM and DSis goes well.

When my Mum was released from hospital with advanced pancreatic cancer she was told she had up to 3 months left. In the end she had 6 weeks. I have 4 sisters and we all moved to stay at Mums and help in shifts. She needed round the clock care. One of sisters is a carer and she trained us all on what to do. My children were all teenagers at this point but it still took their toll on them. I went home for 2 days each week as far to travel. My sister who lived locally went home for a couple of hours each day. It was emotionally very hard. My Mum had pain killers and kept in good spirit. The week before she died I was at breaking point. I felt Ill. I cried a lot often in the loo. My Mum had a nurse come every day to administer drugs into a driver pump. The GP came every third day too. Her vicar came twice each week. She did not eat at all for last fortnight and barely drank. I know where you are standing and how bad it is. I would say your parents need to accept carers. You can request a male carer if that would make your Dad feel more comfortable. For my Mum there were 5 daughters. Your Dad only has 2 and I know it is impossible to be awake day and night over time. Your sister and you have done brilliantly, no one could have done more but you also have children who have had a bad time this year. Tell your Mum you need to go home to be with your kids on Xmas day and they will need to book a carer for that day. Your Mum needs to be realistic about what your sister and you can do. You can be there often but not all the time. You should tell her this. Accept help in home with house work. Get a cleaner in for a couple of hours twice a week. Make sure house is aired with plenty of windows opened to get rid of death smell that will hang in house if not aired out. For your own sanity try to get sleep. Ask GP for a few sleep tablets if need be for a few weeks. Finally I agree it is a life changing experience and even though I struggled so much at the time it is an experience that brought me closer to my sisters and one that I felt compelled to do. There were 5 of us to share workload and my sister was a professional carer, there is only 2 of you so be kind to yourself and admit you need professional support to back you up. Your Dad could live for a further month or more so don't let yourself or your sister burn out. Explain that to your Mum. Take care of yourself and your sister and Mum also. It is ok to cry and if you need to rant we are here for you. X

OP, I haven’t read all of it but don’t you dare feel guilty. You’re living through something nobody should have to do and being incredibly strong. If I were there I would give you a massive hug. Please never for a second blame yourself for those feelings and keep telling people even if it’s just us, basic strangers on the internet. So much love to you.

I absolutely sympathise, OP. My dad was fast tracked into a home for what turned out to be the last ten days of his life (heart failure). My M&D both lived with us at the time, with DH and DDs. My mum and I felt so much better that he was getting specialist end of life care and all the pain relief he needed and he had a good death. It was so much better for him and for everyone else in the house.

So sorry op. We only did it for a week before hospital but we we were at the limit of what we could manage. Very hard.

Not judging your sis in any way as you have said she's been great. But why is she able to spend Christmas with her DC and you not with yours? Why are you the fall guy?

Being at home is not always the best thing. I tried to care for my OH at home - carers coming in and out did not work, as they all did things differently and were never here when really needed

This. We had three or four different parts of the NHS or outsourced agencies coming in at different times. It was like Crewe station at home and all so disjointed and stressful for my mum, and all the time feeling we weren't doing the best by DF at all. Meanwhile I was trying to go to work and look after school aged DDs who I so desperately wanted to put first. And DH had been seriously ill as well, so I was worried about him.

@ivykaty44

those of you talking about going into a hospice

some hospice are closing due to covid19 and where they are in the country and what tier they are under. Also the visitors to the hospice can be limited to two people and those two people can't change and must be the same two people each visit. This makes EOL care difficult if family are more than two people

The hospice my husband was in was two people with unlimited indoor visits. And unlimited people who could come and sit on the patio with him (he could stay in his lovely warm bed while they froze on the patio). At the very end everyone was allowed in.

This is in Scotland’s highest tiered area, including our lockdown. My husband actually had four indoor visitors because two of them were children - the rules were pretty flexible.

OP, please don’t be ashamed of how you feel. I had a phobia of my mum’s oncology ward and though I made myself visit I didn’t go as much as I should have because it overwhelmed me so much.
You’ve actually moved your dad into your home which is a lot to deal with. Surely it’s okay to balance your needs against his and insist the carets give you some respite.