This is the first time I have ever written anything on any forum! I don't even have Facebook, so please bear with me.
I'm in this place even though I don't know what stage my mum is at. My dad is her only carer, we do what we can. Dad has never openly accepted mum's condition, he won't use the "d" word and claims she's tired etc when her actions are unusual.
Mum started stumbling her words 8 years ago and rapidly lost words, as if they been erased from her memory. She was eventually diagnosed with non fluent primary progressive aphasia at 64 years old. Dad insisted that all she had lost was her voice, but over the next few years she lost facial expression and her swallowing function became poor.
She lost a lot of weight, became more depressed and isolated and dad became more upset but determined to look after her. I don't know how much support he has been offered and/or rejected as he tells us very little.
About 18 months ago he hinted that more help from us was needed and asked if we would consider moving into a house big enough for all of us. We agreed and have been working towards this. He also wanted to fulfil a long term dream of both himself and mum to return to live by the coast. We are at the point of no return with this plan, I have handed in my notice and we have accepted an offer on our house.
At this precise moment mum's condition appears to have deteriorated and dad has gone into meltdown. It is clear to us that mum's ftd has got worse. She displays agitated compulsive behaviour (refusing to let go of things, stirring drinks endlessly) she wanders off and has lost social awareness. Last week she soiled herself (she wears incontinence pads) and handed me a poo! Dad insists that she 'doesn't register' on 'the dementia scale' only on the stokes scale?? I can't find what this means.
She also burned herself badly last week but appeared to feel no pain at all. Is this 'normal' progression of her condition? What stage would this behaviour indicate? Physically she is in good health.
I am hoping that dad will accept more help after this but feel that it will be an increasingly difficult journey from now on.
Thanks for reading, it has helped to get it out.
I'm in this place even though I don't know what stage my mum is at. My dad is her only carer, we do what we can. Dad has never openly accepted mum's condition, he won't use the "d" word and claims she's tired etc when her actions are unusual.
Mum started stumbling her words 8 years ago and rapidly lost words, as if they been erased from her memory. She was eventually diagnosed with non fluent primary progressive aphasia at 64 years old. Dad insisted that all she had lost was her voice, but over the next few years she lost facial expression and her swallowing function became poor.
She lost a lot of weight, became more depressed and isolated and dad became more upset but determined to look after her. I don't know how much support he has been offered and/or rejected as he tells us very little.
About 18 months ago he hinted that more help from us was needed and asked if we would consider moving into a house big enough for all of us. We agreed and have been working towards this. He also wanted to fulfil a long term dream of both himself and mum to return to live by the coast. We are at the point of no return with this plan, I have handed in my notice and we have accepted an offer on our house.
At this precise moment mum's condition appears to have deteriorated and dad has gone into meltdown. It is clear to us that mum's ftd has got worse. She displays agitated compulsive behaviour (refusing to let go of things, stirring drinks endlessly) she wanders off and has lost social awareness. Last week she soiled herself (she wears incontinence pads) and handed me a poo! Dad insists that she 'doesn't register' on 'the dementia scale' only on the stokes scale?? I can't find what this means.
She also burned herself badly last week but appeared to feel no pain at all. Is this 'normal' progression of her condition? What stage would this behaviour indicate? Physically she is in good health.
I am hoping that dad will accept more help after this but feel that it will be an increasingly difficult journey from now on.
Thanks for reading, it has helped to get it out.
so sorry you seem to be inbetween a rock and hard place at the moment, understand totally that your dad wants to do all the looking after,but sadly at the moment a big worry is mum wandering off and also burning herself, may I gently suggest that maybe you could see her doctor or have a telephone consultation in confidence,regarding these new worrying problems? some GPs can be very clever in persuading a partner that help is needed without saying so! above all I hope you get practical help very soon, please let us know how things are going.
