Does what it says on the tin! Notes to self. A diary, if you will, recounting and recalling my life thus far, with and without MND.
Friday, 22 October 2010
Letter to D (Continuing Health Care Funding)
Continuing Health Care Funding
D, I don't even know if you still work here! I shall crack on as if you do.
They want to take my daughter and put me in a home...
Do you know anything about continuing health care funding? My PCT say I have the maximum provision. I get 10 hours a day with 5 of them for 2 carers and the rest 1 person working alone. I have practically no movement left and communicate via eyegaze. I constantly battle pressure sores and postural pain and have a feeding tube. On the upside my breathing is still about 50%. I wake throughout the night, often soiling myself and wait to be hoisted by the morning shift. I am sure I know of people with sleep over staff. District Nurses say that if I need more help, it will be provided in a residential setting by moving me into a care home. My poor daughter! I am in bits. I am so scared. I am 41, I have had MND for 5yrs and it has spiralled of late. My care package has not been reassessed for over a year. This disease will continue to get worse and I am already in agony at night unless somebody moves my position. My 14yr old can't be responsible if I am choking on saliva. Sorry to rant. Any ideas? How do other mothers cope, in my position? Give up their children? I tried the MND Association, who were sympathetic but no practical help. Plenty of end of life advice but I'm not there yet and I reckon on being around for the next two or three years, or so. I just want to do that at home. I can still be a mum. It's more cerebral than practical stuff but she gives me a hug, I dribble, she tells me about school and asks some devastatingly insightful question, I attempt to answer and dribble, she hugs me and skips off to skype her boyfriend for four hours. Normal stuff! They can't split us up! It's the struggle with the pct that I don't think I have strength for. I have no partner or family involvement. My daughter is welcome at school friends houses when I'm in hospital but I'm not ready to sign off on either of us. If and when I die and over my dead body, my sister will look after my daughter . It is not yet. They threw the gem in on a Friday as well. _________________
I didn't mean to get in touch with an ask but where do I start?