Two months ago I became the full time carer for my dad who has late stage lung fibrosis, recently diagnosed with lung and colon cancer. I live in Wales and Dad is the South East. I have had to move back in with him as I am an only child and he doesnt have anyone else. Thankfully my work for the Alzheimers Society is continuing remotely from here.
I think we have been very lucky, since he was discharged from hospital we have had all of the equipment put in the home and a care package of 2hrs per day, all done within a week of diagnosis. We believe he has a few months to live…I guess who knows. Some days he seems ok and others very unwell.
I only work 3 days per week and at present it is manageable, although I am feeling very tired (hormonal fatigue also). He doesnt wake during the night, once I have taken his oxygen off at midnight I get a full nights sleep so I know I am very lucky.
Trying to negotiate my way around which company does what for Dads care and what wellbeing support I can get is the biggest struggle at the moment. We have the hospice nurses coming out next week, which I imagine will be a great help.
I am looking for an online carers support group that isnt during my working hours, that is proving pretty difficult but I will keep searching.
If anyone has anything they think would be useful for me to know as a new carer I would very much appreciate it. Just about to have a search through all of the forums.
Welcome to the forum. Is dad claiming Attendance Allowance?
Google NHS Continuing Healthcare Framework. If dad qualifies all care is free, but it’s easier to get some places than others.
Ask Social Services to do a Carers Assessment for you and update Dad’s Needs Assessment.
Sorry for the late reply. I applied for it over a month ago before dad went into hospital and deteriorated and we found out he is now end of life, I havent heard anything back about it. To be honest I havent had capacity to chase it. Since he was told he was end of life social services havent had any contact with us. Its just been hospital and community nurses.
I will put it on my list to go, I just need to go back through emails.
I’m sorry to hear your Dad has deteriorated further. If he is now on end of life care, then the GP can refer him for fast track CHC and a lot of the rigamarole is by passed. It should be in place in 48 hours.
Hi Dee, There are special DWP Attendance Allowance “fast track” arrangements for people who are terminally ill.
Ask his GP to make a “Fast track Continuing Healthcare Application”.
Then he can have all the care he needs, free of change, provided by the NHS.
My next suggestion sounds heartless, I know, but in time you will understand.
Google “Signs of Dying” and you will find articles written by people in the hospice movement, explaining how over the last few months the body gradually shuts down.
I wish someone had explained this to me when the first of our four parents was ill, not the last one.
It helped me support my mum so much better, and I’m sure it will help you too.
The next suggest is even worse. Now is the time to bring all dad’s financial papers together, consider how much he can afford to spend on a funeral, and make appropriate arrangements with the firm of your choice. Just explain the situation, and they can make life so much easier for you when you need help most.
Feel free to ask anything you like here, and if we can’t find an answer ourselves, we should be able to point you in the right direction. Take care of yourself too.