Friday, 29 October 2010

Email conversation with MND Specialist Nurse

"How have you been on the reduced dose of Pregabalin? Also, you have noted some other issues/anxieties but you do not go into detail. Is there anything I can do to help? Can you elaborate? 'Anxiety: enduring power of attorney, Care Plan, Christmas, Ex, House, Lonliness.' You mentioned looking at the additional care when I spoke to you briefly in the clinic, has this been arranged?" 

"It's early days for the reduced dose of Pregabalin, I have started taking 150mg (75mg x 2/day) but after last Friday's bombshell, see additional care, I'm finding it hard to assess the damage. 
PoA hasn't been granted yet, which makes all things difficult. I'm not convinced that I have any hope of improvement. My appointees are very busy and largely unavailable for months on end. 
I am struggling to make Christmas tolerable, let alone, fun! Do I have the strength? 
My ex and his partner still live in our house. We are married. When I die, it will be his. 
Loneliness, or more properly, bereavement. A close friend died. He left things a mess, with unanswered questions. I wasn't ready, when I was first diagnosed and people offered to help with these things. I'm ready now but the people have now gone! ADDITIONAL ARE: I am in receipt of continuing health care funding administrated by Social Services. I was last assessed for care over a year ago and that assessment merely adopted the previous year's recommendations by Social Services. My PCT says 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. (15 hours paid within 10 hours of care each day). I have no partner or family involvement. I have practically no movement to assist myself or adjust my position, my speech is difficult and mainly unintelligible. I communicate via eyegaze and cannot use the phone. I constantly battle pressure sores and postural pain and have a feeding tube. 
On the upside, my breathing is still about 50% and I am not vented. I wake through 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. I am not asking for a full staff team 24/7 but I do need a proper assessment and more care hours, from my staff, at home. 
On Friday, the district nurse said 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 already in agony at night unless someone moves me and its a reasonable certainity that it will get worse. My 14 year old can't be responsible if I am choking on saliva. I reckon on being around for the next 2 or 3 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 dribble and attempt to answer, she hugs me and skips off to Skype her boyfriend for 4 hours. Normal stuff! They can't split us up! 
Any help would be great."

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