Neurologist
The neurologist visited last week, to look at Rosemarie's jolting. I think it has become worse and sometimes seems to distress her with its violence. She was originally prescribed Clonazepam (when she was at King's) and I asked for it to be incorporated into the current medication review. Wikipedia suggests it is not good for long term use as an anticonvulsant. The medical establishment must hate that site.
The neurologist, a briskly intelligent woman I liked at once, said that she didn't think the jolting was fits, or Parkinson's, but would discuss it with a consultant. The leaning was a different matter: no immediate diagnosis but it was unlikely to be treatable with medication.
But now that Rosemarie is apparently clear of the chest infection, this is the only obstacle to getting her out of bed and stimulated by other environments. To do this she will need a much better wheelchair than the one she has at the moment (which is really designed for transfer rather than long duration use) - and there is one resident who has exactly the type we need. It is fully adjustable, and padded with 'wings' to support sideways leaning.
The rub is that it costs nearly £3000 and the Care Home is legally required to provide it - which they are unlikely to be enthusiastic about. The family of the resident who has one had a five month fight and had to call in some big guns. Luckily there is solidarity amongst residents' families and I was kindly given copies of all the emails and reports...
So I need to line up a coalition of a Neurologist to pronounce on the leaning and the implied risk of falling if she is not supported, a committed Occupational Therapist to assess her detailed needs and specify the exact requirements of the chair, the Community Mental Health Team to state that she should not be confined to bed for the rest of her life when other options exist, and the funding authority to remind the Care Home who is paying the bill and what they expect for their money.
Another day at the workface.
But if I feel my energy waning I only have to think of the sad, helpless figure lying twisted on her bed, jolting mildly (for the most part) but uncontrollably, relying on me totally. The image waits there to appear whenever I am not actively thinking about something else (and sometimes when I am)
And in the dark nights filled with tears.
The neurologist, a briskly intelligent woman I liked at once, said that she didn't think the jolting was fits, or Parkinson's, but would discuss it with a consultant. The leaning was a different matter: no immediate diagnosis but it was unlikely to be treatable with medication.
But now that Rosemarie is apparently clear of the chest infection, this is the only obstacle to getting her out of bed and stimulated by other environments. To do this she will need a much better wheelchair than the one she has at the moment (which is really designed for transfer rather than long duration use) - and there is one resident who has exactly the type we need. It is fully adjustable, and padded with 'wings' to support sideways leaning.
The rub is that it costs nearly £3000 and the Care Home is legally required to provide it - which they are unlikely to be enthusiastic about. The family of the resident who has one had a five month fight and had to call in some big guns. Luckily there is solidarity amongst residents' families and I was kindly given copies of all the emails and reports...
So I need to line up a coalition of a Neurologist to pronounce on the leaning and the implied risk of falling if she is not supported, a committed Occupational Therapist to assess her detailed needs and specify the exact requirements of the chair, the Community Mental Health Team to state that she should not be confined to bed for the rest of her life when other options exist, and the funding authority to remind the Care Home who is paying the bill and what they expect for their money.
Another day at the workface.
But if I feel my energy waning I only have to think of the sad, helpless figure lying twisted on her bed, jolting mildly (for the most part) but uncontrollably, relying on me totally. The image waits there to appear whenever I am not actively thinking about something else (and sometimes when I am)
And in the dark nights filled with tears.
posted by Other Kosh at 8:26 pm
1 Comments:
Writing with tears in my eyes. How about setting up a justgiving page - or similar crowdfunding to raise the 3k so you don't have to go through this?
Mxx
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