When I visited Jan last, yesterday, I saw the GP for the care home in the office and stepped in to have a chat with her.
Lately, Jan has dipped a bit more - unable to crawl, unable to raise herself now from a position lying on the floor without help, what goes for speech even worse than it was, etc. On top of that, she is starting to have problems swallowing - liquids, mostly.
The GP said they had just started to add thickeners to Jan's drinks.
They fear her becoming dehydrated because that brings additional problems, so need to be able to have her drink as much as possible. I explained that much of the problem was due to time - the care assistants just don't have time to feed Jan drink at the very slow rate she can take it in.
Also, that if she self serves, using a straw, she can regulate what amount she drinks and how often - but that requires someone helping as well.
The GP explained what I already knew - that swallowing difficulties are common with more advanced dementia.
The olanzapine dosage has been reduced because as time goes by, Jan seems to benefit from it less.
The thing that made me blink a bit was when the doctor said that we were in unknown territory for her, regarding Jan's progression. 15 years is longer than most young onset patients have dementia, and the doctor really has no idea how things will go from here on. Jan eats really well, so is very strong. Her immune system - degradation of which frequently leads to viruses etc - is good.
By now it could have been expected that Jan would have succumbed to something - many other young onset residents have done so at the home.
As things stand, the situation could go on and on. The doctor was almost apologising that the high level of care that Jan receives is resulting in her time in hell being made longer. This fact had occurred to me some time ago.
It is a difficult situation.
Naturally I want her suffering to end, yet I can't comprehend what life will be like without her being there.
I want her to have the best possible care [can't say 'quality of life' because that has ceased to mean anything for her] yet I don't want that care to prolong her state.
I think it is all called hell on earth.
Lately, Jan has dipped a bit more - unable to crawl, unable to raise herself now from a position lying on the floor without help, what goes for speech even worse than it was, etc. On top of that, she is starting to have problems swallowing - liquids, mostly.
The GP said they had just started to add thickeners to Jan's drinks.
They fear her becoming dehydrated because that brings additional problems, so need to be able to have her drink as much as possible. I explained that much of the problem was due to time - the care assistants just don't have time to feed Jan drink at the very slow rate she can take it in.
Also, that if she self serves, using a straw, she can regulate what amount she drinks and how often - but that requires someone helping as well.
The GP explained what I already knew - that swallowing difficulties are common with more advanced dementia.
The olanzapine dosage has been reduced because as time goes by, Jan seems to benefit from it less.
The thing that made me blink a bit was when the doctor said that we were in unknown territory for her, regarding Jan's progression. 15 years is longer than most young onset patients have dementia, and the doctor really has no idea how things will go from here on. Jan eats really well, so is very strong. Her immune system - degradation of which frequently leads to viruses etc - is good.
By now it could have been expected that Jan would have succumbed to something - many other young onset residents have done so at the home.
As things stand, the situation could go on and on. The doctor was almost apologising that the high level of care that Jan receives is resulting in her time in hell being made longer. This fact had occurred to me some time ago.
It is a difficult situation.
Naturally I want her suffering to end, yet I can't comprehend what life will be like without her being there.
I want her to have the best possible care [can't say 'quality of life' because that has ceased to mean anything for her] yet I don't want that care to prolong her state.
I think it is all called hell on earth.