New to caring

Hi there, my name is Ally and I’m 48. Eight weeks ago I got a call to say my father had been take. To hospital and was t expected to last the night. I love 5 hours away in Cornwall so anxiously made the journey up to Buckinghamshire to be with my dad. When I got there I was all kitted up in PPE and shown in to my fathers bed in the ITU where I was allowed to sit with him and say my goodbyes. My father had had a cardiac arrest and I was told a shadow had been found on his lung. Dad did make it but he is in the advanced stages of lung cancer. We lost my mum 12 years ago from Parkinson’s and my sister passed away 2 years ago with breast cancer so it’s just me and dad now. I have been up here caring for him since he came home from hospital just before Christmas and I feel out of my depth. I don’t know what to expect. Dad doesn’t want to know about his diagnosis and sleeps most of the time. He has necrosis of the foot and is unable to stand unaided and when he does stand with his frame he stands like a flamingo.he has a carer come in twice daily to help with washing as dad doesn’t want me to do it. The hospice are also in contact as well as dads doctors. I can’t leave him on his own and and feel so isolated. My father and I haven’t had the best father daughter relationship over the years he’s not very paternal at all but I am all he’s got. I just need to talk to other people who can understand how I feel. Thanks for listening

Your father should be receiving NHS Continuing Healthcare, (CHC) FREE care either at home or in the hospice or a nursing home.
You CANNOT be forced to care, I’m dismayed that they haven’t sorted out a proper care plan and CHC before sending him home.
Tell us more about your own home situation.

Thank you for your reply.
Dad has a carer come in briefly twice a day in the morning and in the evening.
If he is sleeping they check him quick then leave him sleep
The district nurse came out the other day with an application for some sort of funding for continued care.
As I said I am new to this caring thing and need to know I am doing all I can and that dad isn’t suffering
Dad is a very stubborn man and has pushed people away including me and his own brothers since we lost my sister.
He has gone from a man who rode his bike everywhere to someone who can’t even stand unaided in a matter of weeks
He is on morphine to control the pain as well as other meds which I have to give him and I am ok with that but in the morning he is very hard to wake up to take his med.
I feel selfish for wanting a bit of time to myself and my children are all back in Cornwall, apart from video chats I haven’t seen them for nearly 9 weeks which with lockdown is probably the same for everyone but I feel so alone and isolated

You need to go back to Cornwall. Continuing Healthcare could give him all the care he needs, either in his home, or a nursing home. You need to find out how much longer he has, and plan accordingly. Have you investigated funeral directors and costs? I’m afraid now is the time to do this. Does dad own or rent his home? Has he shared any details about his finances with you? Do you have Power of Attorney?
It is also time for you to Google “Signs of Dying” so that you understand as much as possible about the next few weeks. My advice comes having dealt with all four parents, brother and husband. Feel free to ask her about anything.

Going back to Cornwall is out of the question it’s a 5 hour journey and o don’t drive so I need to be close by.
I had a call this morning and CHC has now been put in place starting this evening. Someone is coming out at 1pm to do an assessment.
Is there any questions I should be asking?

Have you thought any more about my suggestions?
Can you stay there indefinitely?

First, you need to know how long dad has left.
Otherwise, write down everything dad can do for himself, if anything at all.
Write down what you struggle with most.
Do you want him to go to a hospice or nurse him to the end, including the most intimate care?
If so, do you have all the equipment you will need?
Have you learned about food and drink for a dying person?