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.

They (mum & dad?) can't send carers away & expect others to pick up that care
they are totally out of order but they know they can get away with it b/c the situation is so dire & you will feel too guilty to speak out
they have you cornered:(

You have nothing to feel guilty about

My mum is a carer to my sibling (severe SN). My granda already has carers come in as he has been ill for a few years. My granny fell recently and while in hospital said to my mum she didn't want carers coming in for her and wanted my mum to (hospital said she would need them). My mum had to put her foot down and say no. She already is a full time carer and simply does not have the time or mental capacity to care for 2/3 people all day, every day. Gran was upset by it but eventually accepted it. All is fine now, it's been accepted.

You need to spend Xmas with your kids and have a break. Carers need to come in from now on.

Only in novels and in exceptional cases do very ill people “slip away”. Death can be drawn out, brutal, painful and very frightening for all concerned.

A hospice knows how to let someone have a “good” death. The GP is the one to step in and tell your parents that professional care is essential.

OP, this is exactly what happened with my father. I have nothing but every sympathy with you, do not feel ashamed about how you feel, it's how I felt too. My father wanted to die at home, and so we did everything to make sure he got his wish. But it was horrible and hard to bear.

I sincerely wish you all good wishes. You will get through this, and please, do not feel ashamed about how you feel. It's horrible thing to witness and deal with, particularly at this time of year. Please try to take care of yourself, you are the most important thing in this equation, do not forget this.

@diddl
I'm afraid I disagree that there isn't a need for another family member to spend Xmas day with the OPs mother. Even if they had carers in to provide the practical support that her father needs it is completely unfair from an emotional perspective to expect a woman in her position to be left without support from her family on Xmas day.

Even if he dies before Christmas day my mum has said she wants me to be with her which of course I will be I couldn't and wouldn't leave her alone

I'm very sorry you're in this sad situation, OP, but you might want to take a moment to think how this is going to look when your dad's no longer here. Your DPs already expect a lot of you and naturally your mum will be devastated when he goes - so what will you do if she wants your stay to go on - and on, and on?

You've said several times that you were "given no option" over the home care, but actually this isn't something which needs to be given; you have choices too, but if you opt for continuing I hope it goes as well for you as it possibly can

I'm so sorry to hear this OP.

As pp's have said you have nothing to feel guilty about.

My GF was determined to die at home and also refused carers.

My GM was adamant his wishes be respected despite my DM's and my views otherwise.

My GM, DM and I worked "shifts" for just over 5 weeks (I took unpaid leave from work as did DM) and my DF pitched in around work as much as he possibly could.

I've never been so physically/mentally/emotionally broken as I was at the end to the point I couldn't really grieve because I was just relived it was over (and I was in my mid twenties no children). It took me another 6 months I'd say to actually start to mourn properly having finally shed the trauma of that time.

The idea of shifts make it sound feasible but it just wasn't. At every crisis (usually pain management related) we'd all pitch in and there were periods we were had no real respite for days at a time and they grew more frequent towards the end - by which time all our reserves where utterly depleted.

It was so very hard and my DM and I had the added burden of a huge worry that we'd lose my GM as well through the stress of care in her 70's.

In truth I didn't want my last memories of my much loved GF as being responsible for intimate care or being in pain as we waited for HCP's to get the house to help him.

I honestly feel it would have been best for DM, myself and GF if he'd gone to a hospice.

However that said, it wouldn't have been best for GM.

Despite the toll it took on her she derived a great deal of comfort from knowing she'd looked after him until the end.

Also witnessing his decline so closely (she said) made his passing easier because she knew "it was time" and she really understood that his body couldn't fight any more and we'd reached a point where to keep him pain free was getting into the territory of being lethal in itself.

Would I do it again? No. But I don't think I'd ever have to.

The experience made me DM/DF very sure that if we were in this situation we'd want hospice care, not only for ourselves but for our loved ones.

So again I'm sorry .

It's really tough and you've no reason to feel guilt at acknowledging that. It's also ok to feel angry (as I and DM did) that the patient is making choices that had an impact they didn't fully appreciate (and in latter stages probably wasn't aware of) on those they love (especially adding to be burden by refusing carers).

Try and look after yourself as best you can. I remember making big pots of soup that we'd all just help ourselves to at various points in the day/night without "cooking" (something about eating soup at 4am felt better than a sandwich and warming in the winter).

Most of all be kind to yourself mentally. You feel how you feel and it's not right/wrong - it just is.

@WiseUpJanetWeiss

Maybe YOU should read better too. I spotted my mistake, and apologised to the OP within a minute of posting! (And 7 minutes before you posted the snarky post aimed at me.)

You have absolutely no reason to feel any guilt about your feelings. Maybe all your family would secretly be relieved to have the carers back.

Do those of you who think the OP should demand to spend the day with her children think that it is acceptable to demand that the children's dad hands them over for the day considering he will have already made plans for the day that involve spending it with his children?

DH died in a hospice in lockdown - I was allowed to visit every day for as long as I wanted. We had tried palliative care at home but eventually I just burnt out. I couldn’t do it anymore. The final straw was having an emergency on a Friday night and not being able to get hold of anyone (and then the next day trying to get in touch with the district nurses and being on hold to 111 for 40 minutes before getting through to a girl who said it would just have to wait until Monday). I ended up just sedating him with no guidance other than my own common sense.

Having spent a considerable amount of time in the hospice with him I don’t know why anyone would choose to die anywhere else. His every need was met in a way that I couldn’t have managed (and I have a lot of previous care experience as well as being an AHP). It was peaceful, calm, dignified.

If your mum can’t manage on her own then I think it’s time to speak to the GP and see what the other options are. You don’t have to continue like this.

[quote StatisticalSense]@diddl
I'm afraid I disagree that there isn't a need for another family member to spend Xmas day with the OPs mother. Even if they had carers in to provide the practical support that her father needs it is completely unfair from an emotional perspective to expect a woman in her position to be left without support from her family on Xmas day.[/quote]
Well aren't they lucky then that Op will just step up?

Is there no thought Op of you having any time at all with your kids?

Op my DM died almost 9 years ago, my dd was her main carer. They refused a hospice, only allowed the hospice nurses in during her last week of life. My memories of they time are awful. After my DM died my dad was rushed to hospital for major heart surgery. I can't look at my childhood home the same anymore.

As you are being a main carer you have an absolute right to say enough is enough and that you need the carers in to help.

[quote LisaLee333]@WiseUpJanetWeiss

Maybe YOU should read better too. I spotted my mistake, and apologised to the OP within a minute of posting! (And 7 minutes before you posted the snarky post aimed at me.)[/quote]
Your second post was not there when I wrote mine, only your goady one, so wind your neck in.

@NeutralJanet

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.

This!

Sorry one thing I should have added to my post earlier.

In the last week GF was only minimally aware of his surroundings.

I really wish DM and I had insisted with GM at that point that irrespective of GF's wishes that we'd got professional carers in.

In all honesty he wouldn't have known and it would have made a huge difference to us given as I'd posted earlier, that by that point our reserves were totally depleted.

I genuinely think it would have made his passing easier also.

So if I can pass on any advice wrt your DM/DS insisting he stays at home that you in return also insist that they need to allow professional carers and frame it as being in everyone's best interests (which it absolutely is), especially your DF's, as end of life pain management really needs a administered by a professional to be as optimal as it can be.

OP, could it be that your mum is reluctant to ask for (or accept) outside help because she's afraid that people will think she can't cope

This!

Mum constantly worries about being judged. She was carer to her own mum from the age of 9 till 18. She hates the thought of others thinking she cannot cope.

My exh is amazing and will look after our DC outside of "contact time" without question.

Because of this thread I called my bil and he agrees with me that we need more support. He will stand by me when I talk to mum and my DSIS tomorrow about the carers being allowed to do more.
He was shocked to learn the state I am in and he is sure if mum and DSIS new they would look at other options.

I cannot thank you all enough. You dont know how much of a boost your posts have given me.

You’ve already had a lot of wise and supportive answers but I feel compelled to chip in with my own message anyway.
Your feelings are justified and they are normal. This is a huge amount to bear. I wish you all the very best at this truly grim time.

You have nothing to be ashamed of. I only visited my dying father when he was in a hospice because there was no way that I was able to do much caring. If I had visited it meant staying with them and I couldn’t face it.

My father was physically and emotionally abusive, although he could be very generous, funny and was the physically affectionate parent. My mother is, at best, cold, at worst indifferent. I couldn’t wait to get away from them when I was growing up. I am no contact with my mother and sister as a result of their behaviour.

So caring for parents is complicated and exhausting. Whatever you decide there is always a price. Mine was being thought (and called) selfish and heartless. The fact that I have serious health problems is ignored and minimised so I had to keep my distance.

Good luck whatever you decide.

My lovely stepfather chose to die at home and refused much care so it fell to dmum. It's incredibly selfish. Do what you can and no more.

It's understandable that people feel they ought to comply with the wishes of the dying person, but a dying person is unlikely to be in a frame of mind where they can make balanced measured choices.
These are significant and painful rites of passage, I think it's good to seek guidance from experts to help us make the right choices

You sound like an amazing, incredibly giving person who is just beginning to give yourself permission to accept that you also have limits, just like everyone does. It sounds as though you will now be able do the right and good thing for yourself and for your children, by saying “I can’t do this anymore” when that is your truth. Hopefully all of your family members will understand that in time, but even if a few of them cannot, you will.

I am also thankful to you for posting this, because you and the other posters have taught me much that will apply in my own life, both with respect to my parents and also, hopefully quite some years in the future, when my own time comes.

So, you have not only received support by sharing such personal experiences on this forum. You have also helped others, or at least me, to learn some important wisdom about how to accompany and also how to face the dying process, through which each of us shall some day pass.

OP So very, very pleased to hear that some of your family are understanding how bad all this is for you. You've been a hero and your DC should be very proud of you.

My DM refused to go into a hospice. We organised and paid for professional carers; we (her children) did our bit also. But she was so ill...

But we had a great and sympathetic GP. She made regular visits and one day just stood there and called up an ambulance to take DM to the hospice. No ifs no buts. She said to DM it was for 'assessment'; DM not best pleased but liked the GP and therefore went along with it. Hospice was utterly fantastic. DM was there for several weeks. We could visit any/all the time; DM was kept clean, dignified, comfortable (heavy duty meds) in a little private space full of flowers with a view of the garden. At the end, she couldn't eat, but we were given free access to little sponges on a stick and fresh water, and little sachets or ready-break (a nurse explained that even sipping these from said sponges might make DM feel as if she had eaten) etc etc. At the very end, I happened to be out of the room but a lovely hospice nurse sat with and spoke gently to DM and held DM's hand.
If you can, please please do get your father to a hospice or as others have said get them involved as 'hospice at home' care. They really are the experts.
Take care, OP. It's tough.

OP there is a wonderful book called "A Monster Calls" about a boy whose mother is dying of cancer. He has to endure months of hope but all he wants is the truth. The message in the end is that it is ok to want something to be over; to want someone to die quickly when they are dying. To want to let someone go.

You are being incredibly hard on yourself. You absolutely must take a step back. You have three children. Your mum, sister and your dad all chose this path and that is their choice to make. But you must reclaim some of your life. You will be no good to anyone if you are so ill your hair is falling out.

This is a terrible time for all of you. Feeling different doesn't make you worse than them.

So very glad to hear you've spoken to your BIL.

I can't stress enough how important it is to get some support in these latter stages and how much DM and I regret we didn't do so (looking back I think after 4 weeks of 24 hr care we were just "beyond" thinking and on automatic pilot and would have really benefited from someone like your BIL intervening).