Hydro

Rachael went through full range of motion exercises, particularly focusing on both knees, of which, Katie said were very stiff. Whilst standing in the pool, attempting assisted hip exercise, Rachael's rig tube was pulled and afterwards, whilst changing, Rachael noticed some bleeding. We cleaned the stem site and monitored it overnight. There were a few slight bleeds and Rachael felt tender inside the stoma.

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."

Email received from Physiotherapist

"Angela and me are looking at arranging a convenient time to go through your limb exercise programme with your team. We would need a time that all your team that would be performing the programme with you could be there/main staff. We work Monday to Friday - 8.30am to 4.30pm." - Katherine


"I have passed your email onto my PA. Look forward to seeing you soon." - Rachael

Visit from Dietician

Discussed overnight feed alarm and alternate methods of feeding. The bolus method was deemed inappropriate posing more problems than it solved. It was noted that the overnight feed was not the only thing to change in the last 2 years as Rachael's condition has declined. Discussed postural pain/pressure sores. Claire was unable to help but did say extra protein could make a difference. Discussed choking occurances and Rachael said choking can happen at all times and increasingly. The amount of feed Rachael was taken deemed fine and incontinence overnight was also discussed. Advised of current weight and said will be re-weighed again by Dr E on 19/01/11. Concluded no issues with feed. Discussed bowel and bladder movements. Claire advised to continue taking lots of fluids. Concurred that balancing incontinence and constipation is difficult and agreed to err on the side of incontinence.

Email received from Dietician

Claire emailed to see how Rachael was tolerating the overnight feed.

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?

Hope to speak in better circumstances soon

love n all

Me

Letter received from Dr E

Letter filed: Dr E sent notes and recommendations from clinic attended on 20/10/10. . Copy of consultant notes sent to GP.