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Original poster

So ashamed of how I feel can only say it here

235 replies

LastRoloIsMine · 20/12/2020 14:50

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 posts:
TheWeightOfWords · 20/12/2020 18:44

I'm glad you talked to your brother-in-law. There is a lot to do after someone has died I'm afraid to say, so you do need to reserve your energy for afterwards. Please stand your ground. Flowers

CustardySergeant · 20/12/2020 18:44

Please please do your utmost to get your father into a hospice as soon as possible. I am sure your mother will see that your father's care will be exemplary and family will be able to be with him whenever they want to. You are at breaking point and it will be a huge relief for everyone when he is in the hospice and getting the care he needs without causing his family even more distress trying to care for him themselves at the end of his life.

Retiremental · 20/12/2020 18:47

@CustardySergeant

Please please do your utmost to get your father into a hospice as soon as possible. I am sure your mother will see that your father's care will be exemplary and family will be able to be with him whenever they want to. You are at breaking point and it will be a huge relief for everyone when he is in the hospice and getting the care he needs without causing his family even more distress trying to care for him themselves at the end of his life.
Hospices are also subject to stringent visiting restrictions at the minute.
Toddlerteaplease · 20/12/2020 18:48

Not everyone is cit out to be a carer. I don't think I could do it with my parents if they were in that situation, and I'm a nurse. You have nothing to feel bad about.

Hailtomyteeth · 20/12/2020 18:50

Definitely get the carers back and take some time for yourself. I'm glad your brother in law will support you.

My mother's final illness contributed to my major, life-changing breakdown. There were other things, but the 'caring' was part of it. If you collapse completely, as I did, you will be no use to anyone for the next few years.

You cannot do everything. People will expect you to try. Don't. Cut back on the caring now, and protect yourself. It's essential for you and for your children.

DianaT1969 · 20/12/2020 18:51

In my opinion he would get better pain relief in a hospice. Has he got a hospital bed and a syringe pump? Is he under a palliative care team? It isn't too late to change this.

CustardySergeant · 20/12/2020 18:54

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

DougRossIsTheBoss · 20/12/2020 18:57

Whilst it's true there are restrictions at hospices it's nowhere near as bad as hospital or a care home. We were allowed in to see DM every day 2 at a time and in her final hours we were allowed unlimited visiting.

DeRigueurMortis · 20/12/2020 18:58

@CustardySergeant

Please please do your utmost to get your father into a hospice as soon as possible. I am sure your mother will see that your father's care will be exemplary and family will be able to be with him whenever they want to. You are at breaking point and it will be a huge relief for everyone when he is in the hospice and getting the care he needs without causing his family even more distress trying to care for him themselves at the end of his life.

I'd agree that's best, but based on my experience when the patient and their spouse "want" to die at home with only family looking after them, it's a huge gulf between expectations.

As such I think the best option is getting professional care into the home.

That's immediate support for all involved plus it's likely to show the difference that professional EOL care can provide which in turn is likely to make it easier to open up the conversation about a hospice.

If you "jump" straight to hospice in this circumstance it's likely to be rejected outright.

Original poster
LastRoloIsMine · 20/12/2020 19:01

Hi just to answer a few questions.

Dads got a profiling bed, air mattress and other medical equipment. They brought it all with 24 hours absolutely amazing team.

He has morphine as and when and other controlled drugs the district nurses can give if required.

The NHS and charity care has been second to none. Its just my mum and sister refuse to accept their support. However now I have my BIL on side it may mean they accept more help going forward.

OP posts:
housemdwaswrong · 20/12/2020 19:06

Good news. Take care of yourself. Xx

Accidentalaccountant · 20/12/2020 19:16

Good news. I think it can be that parents expect you to give up your life for theirs. It's not fair. Good luck. X

DeRigueurMortis · 20/12/2020 19:23

@LastRoloIsMine

Hi just to answer a few questions.

Dads got a profiling bed, air mattress and other medical equipment. They brought it all with 24 hours absolutely amazing team.

He has morphine as and when and other controlled drugs the district nurses can give if required.

The NHS and charity care has been second to none. Its just my mum and sister refuse to accept their support. However now I have my BIL on side it may mean they accept more help going forward.

I think you and BIL need to keep pressing this.

The more care your DF gets from professionals the more they (DM/DSiS) will see the gap between that and the care you alone as a family you can provide.

As such they are then more likely to start accepting more help.

It's not weakness or selfish to ask for professional help in these circumstances. It's the reverse.

End of life care is very challenging and focused on the individual and their needs - but understanding those needs is based on a lot of experience, which most relatives simply won't have (plus the difficulty in separating emotions from clinical decisions).

Teddybear27 · 20/12/2020 19:26

You are not being unreasonable but you are being far too hard on yourself. When a family member is dying it is an extremely difficult and distressing time for everyone. You are obviously very stressed if your hair is falling out. I absolutely agree with SweatyBetty20....

Yohoheaveho · 20/12/2020 19:39

It's not weakness or selfish to ask for professional help in these circumstances. It's the reverse
I agree, it seems selfish and pigheaded to insist you dont need help with something as massive and traumatic as this, the whole 'keep it in the family' thing is often about saving face whilst ignoring the trauma

warmandtoasty2day · 20/12/2020 20:17

my dm is at stage 5 with ckd and is dying in hospital, she wants to be at home and although i'm an ex terminal nurse, i would struggle to look after her, too close to the situation.
this thread has confined my fears.

DeRigueurMortis · 20/12/2020 20:24

@warmandtoasty2day so sorry to hear about your mum Thanks

This is going to sound brutal but based on my experience, as long as you are sure the patient has access to the best possible care, what they think they want isn't the priority.

As per my pp's I'm very, very sure my GF's passing would have been easier for him, myself/DM/GM if we'd ignored his wishes to die at home without professional carers.

beavisandbutthead · 20/12/2020 20:24

I totally understand where you are coming from. My Dh is having a terrible time during his cancer treatment. We know it is terminal and treatment is to slow spread not cure. I am a full time carer and work full time and deal with our dc. He is resistive to going to his parents even with covid permitting, he seems insistent he stays at home, doesnt care I am exhausted and i am finding his view point terribly selfish and i do need a break...its all well and good folks declining help but then expecting family member to step in,...as my mother said to me when you need to clean my ass send me to care as the thought of her DD doing it horrified her....

DougRossIsTheBoss · 20/12/2020 20:33

I feel very lucky that my mum had a long time to think about her wishes as she'd had the cancer a long time. Also that she was a very kind and generous person and everything she wanted for her last days was mainly to ease the pain and suffering of those who would have to go on without her.
Her main reason for not wanting to die at home was not to burden my dad and leave him with sad memories
She didn't leave very prescriptive instructions for her memorial as she said 'well I won't be there!' She thought we should do whatever helped us.
She concentrated instead on having as much practicalities sorted out as possible: funeral plan, will, banking details all left very clearly

I really do hope to be as selfless as that if I have the chance to prepare.

Enko · 20/12/2020 20:33

Good news BIL is on your side op. thinking about you hoping you get it sorted

DougRossIsTheBoss · 20/12/2020 20:36

The point of mentioning that was to say that whilst dying people's wishes are important the people who have to go on living are important too.

It's not at all wrong for you to acknowledge your own needs in this as you have got to carry on afterwards and that needs a lot of strength too.

billy1966 · 20/12/2020 20:45

You certainly have nothing to be ashamed of.
I can understand wanting to help but you have a responsibility to your children.
Becoming ill is not in yours or their best interest.

I agree with above, the dying have to understand the living have to go on.

Please mind yourself OP.Flowers

DeRigueurMortis · 20/12/2020 21:04

@beavisandbutthead so sorry to hear that.

As per the general advice on this thread I think you also need to get as much support as you are able irrespective of what your DH wants.

The "fallout" of caring for my GF lasted far longer than his illness and my memories of a man I really loved were tainted by the experience of providing EOL care without professional support.

warmandtoasty2day · 20/12/2020 21:24

derig thanks you for your kind words, i haven't seen her since march because of her ill health, she had covid and lockdown on her care home.
difficult times for so many people.

RandomUser18282 · 20/12/2020 21:30

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.