I should have realised something was wrong with my mum earlier. She was forgetful and clingy, more anxious than usual. She was falling and was giddy. Even the falls clinic did not refer her for scans though, it was the psychiatrist who decided to listen to my fears and observations and not mum's, as usual brilliant performance on being tested for cognitive function.
The scans showed mum had a tumour touching the spinal cord, Alzheimer's (advanced on the scan) and vascular dementia. The psych said that she had been highly functioning and therefore it was hard to spot but I felt I should have known. I should have done more. It is now a year after my father died. He had a stroke. Mum was never the same. She started to fall and trip. She became weak.
I had an argument with the consultant over whether they should tell her about the diagnosis of the tumour and in fact all the conditions. I knew she would be devastated. It was patient rights that won in the end and when I complained that they told her without my being present I was subject to a relentless string of excuses. I told them that my mum's memory was so bad that she could not retain the information they gave her and I should be there to ensure their accountability. The next day she was due at the day centre and she could not walk at all, she end up in hospital, she has not been home since, that was April.
Three months later and my mother is bed bound, doubly incontinent, low and sometimes no speech and I am doing what I thought I would never do - looking at care homes. I can't face her going into one, no matter how lovely the staff or the gardens and shiny equipment. So she is coming home.
Now I am faced with leaving work or trusting new carers. My employer was brilliant and let me work part time but after being off for three months I have to make a decision. I have been on unpaid leave while I see mum every day in hospital, she's getting worse all the time. People cheerfully told me to take a break, like I hadn't thought of it myself. But I am afraid that she will forget who I am if I don't see her daily, like my grandmother forgot her. We always lived together Mum and me. I can't face not seeing her and that beautiful, warm smile. People keep saying aren't you good, not everyone would do that. I find it odd to think I have an option not to care for my Mum but I have no one else and neither does she.
An LPA and an NHS panel (that I will have to appeal) later, I am still waiting for a supporting care plan from SS but who knows what will happen next.
The scans showed mum had a tumour touching the spinal cord, Alzheimer's (advanced on the scan) and vascular dementia. The psych said that she had been highly functioning and therefore it was hard to spot but I felt I should have known. I should have done more. It is now a year after my father died. He had a stroke. Mum was never the same. She started to fall and trip. She became weak.
I had an argument with the consultant over whether they should tell her about the diagnosis of the tumour and in fact all the conditions. I knew she would be devastated. It was patient rights that won in the end and when I complained that they told her without my being present I was subject to a relentless string of excuses. I told them that my mum's memory was so bad that she could not retain the information they gave her and I should be there to ensure their accountability. The next day she was due at the day centre and she could not walk at all, she end up in hospital, she has not been home since, that was April.
Three months later and my mother is bed bound, doubly incontinent, low and sometimes no speech and I am doing what I thought I would never do - looking at care homes. I can't face her going into one, no matter how lovely the staff or the gardens and shiny equipment. So she is coming home.
Now I am faced with leaving work or trusting new carers. My employer was brilliant and let me work part time but after being off for three months I have to make a decision. I have been on unpaid leave while I see mum every day in hospital, she's getting worse all the time. People cheerfully told me to take a break, like I hadn't thought of it myself. But I am afraid that she will forget who I am if I don't see her daily, like my grandmother forgot her. We always lived together Mum and me. I can't face not seeing her and that beautiful, warm smile. People keep saying aren't you good, not everyone would do that. I find it odd to think I have an option not to care for my Mum but I have no one else and neither does she.
An LPA and an NHS panel (that I will have to appeal) later, I am still waiting for a supporting care plan from SS but who knows what will happen next.
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Thank fo your messages of support - I will just have to ride it out and keep fighting the NHS on funding. I guess that I will have to re-assess the care home thing if I think Mum is more at risk at home. I am glad I saw some though - very varied bunch - not all as dreadful as I had imagined - still it's not home....
