Well we finally had CT scan, under general anaesthetic, as my poppet had refused twice before.
It has come back with no evidence of tumour etc, so no clear answer there. Investigations continue, I'm not sure what the next phase will be...
Meanwhile problems are building and growing! I have finally plucked up courage to email social services, continence nurse,speech therapist, and "boss" nurse, whose title escapes me. I've said that I can no longer care for poppet 24 hours a day.
From next week I have said that I'll cover evening and overnight , but not available from 9am to 5 pm.
I must admit that it's taken a long long time to get to this point, and I'm scared about what the response may be.
The latest issue is that my poppet cannot walk without clinging to walls and doors and pausing in panic at every step. So she can't get to the loo without support, pull her clothes down at all, get up without help, pull her clothes up at all. The incontinence pads and knickers are no help, getting stuck halfway down, and sticking to anything on the way, including my fingers. Disaster! How does anyone manage this? The incontinence nurse has said they'll provide a raised toilet seat. I should explain that poppet is obese, no fault of her own in many ways, as she has cerebral palsy, which stiffens up with age. Though it's mild, and she has been able to,walk, after a fashion. It took her until she was 6 to get on her feet,I'm so sad to see that she's almost "off her feet" now. How will a raised toilet seat be useful?
It's agonising to see her detiorating, and still no clear diagnosis. I constantly think that I see signs that she may be getting better, but, honestly? She's not. I'd welcome your thoughts, especially about me relinquishing some care. I feel so guilty. I try to remember that we were in the process of helping her move on to supported living, before all this began.
Anyway that's me today. Scared, wondering if it's the right thing to do.
It has come back with no evidence of tumour etc, so no clear answer there. Investigations continue, I'm not sure what the next phase will be...
Meanwhile problems are building and growing! I have finally plucked up courage to email social services, continence nurse,speech therapist, and "boss" nurse, whose title escapes me. I've said that I can no longer care for poppet 24 hours a day.
From next week I have said that I'll cover evening and overnight , but not available from 9am to 5 pm.
I must admit that it's taken a long long time to get to this point, and I'm scared about what the response may be.
The latest issue is that my poppet cannot walk without clinging to walls and doors and pausing in panic at every step. So she can't get to the loo without support, pull her clothes down at all, get up without help, pull her clothes up at all. The incontinence pads and knickers are no help, getting stuck halfway down, and sticking to anything on the way, including my fingers. Disaster! How does anyone manage this? The incontinence nurse has said they'll provide a raised toilet seat. I should explain that poppet is obese, no fault of her own in many ways, as she has cerebral palsy, which stiffens up with age. Though it's mild, and she has been able to,walk, after a fashion. It took her until she was 6 to get on her feet,I'm so sad to see that she's almost "off her feet" now. How will a raised toilet seat be useful?
It's agonising to see her detiorating, and still no clear diagnosis. I constantly think that I see signs that she may be getting better, but, honestly? She's not. I'd welcome your thoughts, especially about me relinquishing some care. I feel so guilty. I try to remember that we were in the process of helping her move on to supported living, before all this began.
Anyway that's me today. Scared, wondering if it's the right thing to do.
