Much loved father is dying - feel lost

[FairyF1]

There is just me and my father . I love him unconditionally- he gives meaning to my life. He has been ill for a long time and in hispitalnaince December. The hospital told us that he had three months to live at the end of January. I feel broken.
They say he is unsuitable for a hospice and won’t support an application. They are trying for Fast Track CHC but the care proposed (at home - they wanted £700 per week top up for a nursing home which I just don’t have) is insufficient- just one hour between 6pm and 7am. I jdon’t know how we will cope- he needs assistance of two to move him (bed bound)., is double incontinent, not eating , drinking and very confused My parents are divorced and I have no siblings. I feel like I am letting him down and am very distraught. I have been to my GP who has prescribed antidepressants but although she referred me for counselling the CMHT declined my application/said I should wait to apply once he had died and phone the Samaritans in the meantime! I feel broken - I just want to focus on what he needs but feel so scared/terrified of letting him down and very alone. Is anyone else going through something similar- if so please let me know how you survived. Thank you.

So sorry to hear this

Has he had a full discharge assessment involving a multidisciplinary team? It seems very odd that they are considering discharging someone with his needs back home with one care visit a day while at the same time fast tracking him for CHC. Are they assuming you can provide the additional personal care that he needs?

Thank you so much for responding. He has had a MDT Assessment and they are proposing 2/3 visits in the day but just one at night (between 6pm and 7am). My father lives alone in a one bed room warden controlled flat. I had asked work if I could work flexibly/have a sabbatical but they have said no. I’m scared that even if I give up my job I just won’t be able to cope on my own. I wondered if others have done this completely alone and if so if they have any advice? Thank you.

Hi, I wanted to reply because I think I understand some of where you're coming from. I lost my mum last year and like you it was just us, no siblings or dad on the scene.
From that point of view I understand how hard it is without the support of anyone else who understands, emotionally and practically speaking.
My mum has cancer and in her last year had carers at home 3x per day then in her last 6 months a nursing home.
It's a huge strain constantly advocating for them and very hard on you. Do you have good friends or a partner?
In the end mum was in a hospice and it was brilliant they offered me support too. Good luck. Sorry I can't advise on the practicalities as my mum was eligible for the care for free.
Double check he's getting what he's entitled to x

Push for the hospice. He might not be at end of life care but respite care and the general support they can give to you as well as him would probably really help.

Take care in these tough times

I'm so sorry to read this, you are obviously so caring. Does your dad have a specialist nurse you could contact? Or maybe his GP? Sorry, I have no experience with this

Thank you for your kind words. I think the hospice would have been ideal but it needs a referral from the Palliative Care Team at the hospital and they have said he is unsuitable - that his needs can be met at home with appropriate nursing support. I do t know how you would appeal something like that?
I’m so scared- he’s completely alone without me. I haven’t got a partner and all my friends seem to have drifted. I’m finding it very hard- it’s showing me how alone and unloved we are. Without him I’m just going to be completely lost. The sense of loss is huge - I knew this would eventually happen but think deep down I must have hoped that someone would come out of somewhere to help us (perhaps my Mum but as she’s never before I don’t know why I thought she might now). Seeing him so weak and completely dependent on me for everything is so overwhelming- I’m terrified of letting him down.

Tell the palliative team that you are overwhelmed and struggling and ask what additional support they can provide.

Hospices aren’t for long (or medium) in-patient stays, so maybe that’s why your dad isn’t eligible at that point in time. Is he in pain? Pain management can be another reason for a hospice stay.

I’m sorry, I don’t know the official channels to get more support. With my dad we pushed the palliative team (though I never found them that useful tbh) and knew people at our local hospice. He was sent for urgent pain management the first time and that got him “on their books” and also gave him the reassurance that that was the place for him for end of life care too. Then when that time came it was a case of waiting for a bed.

I really feel for you, this is so heartbreakingly difficult.

Sorry to hear this, I would be pushing the doctor and discharge team to put forward the fast track application, if they feel he qualifies for this then he needs extra support which you dont lay for. Has he got suitable equipment at home like a air mattress, continence products. I would ask for another meeting with the delayed discharge xo krdinstor, how do they expect him to manage. Has anyone suggested fast track funding for a carehome.

I understand how you feel. I lived with my father for the last 2 years of his life (he died last April) in order to care for him. I'm an only child, and my husband and I had moved out of the UK 20 years ago, so I came back alone to look after Dad. It is daunting. We had daytime carers in to hoist him for toileting 4 x a day, but other than that, it was just me.

You will not let your father down. Just being with him is what matters most. I used FaceBook to stay in touch with friends and my husband (we also talked on the phone etc.), but basically I just put my head down and got on with it - for Dad. Looking back, it was hard, but at the time I did - and you will do - just what needs to be done. You do it because you love them.

If you ever want to chat with someone who knows what it's like - those times in the small hours of the morning where the sheer weight of responsibility and worry about the future just seem so overwhelming - by all means PM me, I'm always up for a chat or a handhold :)

As for advice - if possible, don't give up your job. You need some life away from your caring role - I didn't have any, and it almost broke me at times. Respite is impossible to get, in my experience - so hang on to as much freedom as you can. I don't feel able to advise re getting help from 'professionals' - it was very hit and miss for me, and all councils are different in what they will and won't do, so I'm not really qualified.

I really feel for you, and for your father. I take comfort in knowing that I did all I could, and Dad knew I was there for him, and he died at home, as he'd wished. It really is a tough thing to go through, though. I wish I could help.