[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Feeling desperate- grateful for any advice - Carers UK Forum

Feeling desperate- grateful for any advice

Share information, support and advice on all aspects of caring.
My dad is in his 70s, single and severely disabled with a terminal illness. I'm an only child, work full time , have my own health issues but love him and try to help as much as I can. He currently recieves 21 hours care a week - direct payments from the council from which he pays his carer (who has helped him for over thirty years since his first stroke). His carer has told us she won't be able to work in December as she has to have an operation. I've tried to get cover at the rate the council will pay (took a weeks annual leave to phone and meet every agency on the council list , that I could find on the internet and through charities). No organisation or individual is available to help at the rate they offer(he has complex needs and has to be washed, dressed and toiled each day). One agency has said they could find people to do it but would want double the amount the council will pay. I've appealed to the council to pay more as its only temporary but they won't. Have written to his MP, local councillor but no reply. My work won't let me take more annual leave and I have no family to help.

I really can't cope any more. I love him so much but it's all too much. I just don't feel I can go on any more- -am exhausted by it all. Spending every day either in work , hospital or helping him. I feel so guilty like I'm failing him. I have been to my GP to say I'm feeling so low but nothing helps. Please I would be so grateful for any suggestions . Thank you.
Google NHS Continuing Healthcare Framework. Look at the Fastrack section , and the checklist. It is epecially designed so terminaaly ill people can have the help they need. Ask the GP immediately to consider making a fast track referral, if agreed, help is supposed to be provided within 48 hours. There should be a choice of care at home or in a nursing home. FREE of charge.
My mum had very high care needs at the end of her life. She went into a lovely nursing home. 24 hour nurse on duty who could give pain relief as and when required, a very important consideration. We could have a good mother daughter relationship, which I really appreciated, as I too was exhausted. Look at the nursing homes starting with the nearest one to you, be sure to ask if they take CHC funded patients.
How long does he have left?
I am sorry you are (understandably) feeling so low and overwhelmed.

Have you asked the local authority if they can suggest another agency which operates at the same fees? Also, and if he has a Care Manager (social worker) appointed to him, this would be your best starting point. Most Care Managers are trained and experienced and a new up to date needs assessment might prove productive.

Nhs CC.....there is a lot of misunderstanding on this forum about this subject. If you think it might be of use to your father now, i suggest you ask his local authority (hopefully he has a Care manager) if they consider it worthwhile to assess him for NHS CC. Trust me, if the LA can shift the cost to the NHS they will.

Do try to rest yourself when you can. Xx
Ps you are not failing him. You are doing your best. ;)
Contact social services, they can put extra care in place and pay for it through their budget. I hope if all works out for you and your dad
Thank you so much for the responses to my previous emails.

I've just had a really difficult Christmas with my severely disabled dad (on top of his kidneys failing, being hemiplegic and deaf and blind he was ill, vomiting and diarrhoea everywhere! Southwark Council refused to help and I had to get a loan to pay for additional carers so I could go to work! ). But hey we are both still alive and I haven't been sacked yet!

I am absolutely exhausted and a bit of an emotional wreck (either in floods of tears or very, very angry with it all- clearing up poo at 4am Christmas morning for the third time that night doesn't bring out the best in me!). I know there are many others who must be in a similar situation and I just wondered how do you do it? What things keep you going and prevents you from completely loosing it?

I am very keen that my last few years with my dad should be ones that I can look back on and think I did my best to give him a happy life and show him love. Keeping patient, kind and sane is obviously key so any tips would be much appreciated! Thank you.
I know this is a difficult question, but have you been given any idea of how long dad is likely to live? Is he claiming Attendance Allowance? Has anyone mentioned NHS Continuing Healthcare to you?
Faye, I live near you, but right now I am living with dad in Kent, so that I can look after him, but my real address is in south east London. I am finding things challenging at the moment, but your challenges are harder! In the future if ever things get a little better for you we could meet in Southwark, anywhere that is easy for you for a coffee. I am very new to caring, have only been living with dad for one month and one day!! .. but sometimes it helps to talk face to face!! ;)
Faye_1506 wrote:
I've just had a really difficult Christmas with my severely disabled dad (on top of his kidneys failing, being hemiplegic and deaf and blind he was ill, vomiting and diarrhoea everywhere!
Sounds like Dad had a bout of the norovirus (winter vomiting bug) which he is now hopefully over and which hopefully you haven't caught it as well ! It might be advisable to get his GP to check him over ?
Norovirus is awful. I had it when I was younger and fitter than I am now. As well as the D&V it took a real effort to get out of bed. I went right off my food for a fortnight, couldn't even stand the smell of cooking.