Hi - this is my first post, and I wondered if anyone had any thoughts, or knew about any services that might help with my family's situation.
I'm 28 and have just finished a PhD - I've lived in my current city for 4 yrs with my partner. My brother is 30 and has always lived with my dad (it's just me, my brother, and my dad), which is several hours away. My brother lived at home when he was at uni and his partner lives nearby. He works part-time in our home town and he wants to have a career in sport.
The Christmas before last my dad was diagnosed with early onset dementia. I think I'm right in saying that it's 'posterior cortical atrophy' - he struggles with hand-eye coordination, spatial awareness, and his sight. His memory is still very good, but he struggles to get dressed, can't cook, is unsteady on his feet and can get lost when he's out and about.
We were so worried how quickly he might deteriorate when we first got the diagnosis, but it's only his sight/spatial awareness that has got worse. He's still very independent and although he gets bored during the day he has an active social life - mainly going to the pub and drinking with his friends. We hope that this can continue for a long while!
But things have come to a head recently: my brother has been looking after my dad for the last year now. He has to stay in in the evenings when my dad goes to the pub to make sure he gets back okay - my dad struggles with the key/door even when it's daylight and he's sober! My brother also helps him dress, sorts out food, takes him to his hospital appointments etc. I visit home about once a month for a long weekend, and whenever my brother is away for the weekend/on holiday. Because I do research/teach at a uni I am quite flexible.
But it turns out my brother had assumed I'd move back home after I finished my PhD, and I think he now feels it's my turn to look after dad more - or at least 50% of the time. He isn't happy in his job, which he's always seen as a stop gap, and wants the freedom to move about and progress in a career in sport.
But I don't want to move back home: I've not lived there for 10 years, and my friends have all moved away as well. My partner and I couldn't both live in my dad's house, and there aren't jobs for us there. And I don't want to ask my partner to move from a place we love and compromise his career (he's just finished his PhD too).
I think my brother wants us both to live at home so we can share the responsibilities and both be able to have a degree of freedom. He wants my dad to keep doing everything he wants to (eg. pub trips) as long as he can, and not to think that he's burdening us. But I don't want to move home and be miserable for an indefinite number of years. And this of course makes me feel incredibly selfish!
I've suggested the three of us sit down and talk about it all openly. I know it's ridiculous that we've not done so already, but I'm also sure anyone reading this will understand why we've put it off. My brother is resistant to talking to dad about it - perhaps because he doesn't want to hurt his pride, but also because he doesn't want him to know the changes we're having to make to look after him, because he shouldn't have to feel guilty about his condition!
To anyone who's kindly read this whole post: is there any information/support/ideas with which I could go to this conversation with?
I'm 28 and have just finished a PhD - I've lived in my current city for 4 yrs with my partner. My brother is 30 and has always lived with my dad (it's just me, my brother, and my dad), which is several hours away. My brother lived at home when he was at uni and his partner lives nearby. He works part-time in our home town and he wants to have a career in sport.
The Christmas before last my dad was diagnosed with early onset dementia. I think I'm right in saying that it's 'posterior cortical atrophy' - he struggles with hand-eye coordination, spatial awareness, and his sight. His memory is still very good, but he struggles to get dressed, can't cook, is unsteady on his feet and can get lost when he's out and about.
We were so worried how quickly he might deteriorate when we first got the diagnosis, but it's only his sight/spatial awareness that has got worse. He's still very independent and although he gets bored during the day he has an active social life - mainly going to the pub and drinking with his friends. We hope that this can continue for a long while!
But things have come to a head recently: my brother has been looking after my dad for the last year now. He has to stay in in the evenings when my dad goes to the pub to make sure he gets back okay - my dad struggles with the key/door even when it's daylight and he's sober! My brother also helps him dress, sorts out food, takes him to his hospital appointments etc. I visit home about once a month for a long weekend, and whenever my brother is away for the weekend/on holiday. Because I do research/teach at a uni I am quite flexible.
But it turns out my brother had assumed I'd move back home after I finished my PhD, and I think he now feels it's my turn to look after dad more - or at least 50% of the time. He isn't happy in his job, which he's always seen as a stop gap, and wants the freedom to move about and progress in a career in sport.
But I don't want to move back home: I've not lived there for 10 years, and my friends have all moved away as well. My partner and I couldn't both live in my dad's house, and there aren't jobs for us there. And I don't want to ask my partner to move from a place we love and compromise his career (he's just finished his PhD too).
I think my brother wants us both to live at home so we can share the responsibilities and both be able to have a degree of freedom. He wants my dad to keep doing everything he wants to (eg. pub trips) as long as he can, and not to think that he's burdening us. But I don't want to move home and be miserable for an indefinite number of years. And this of course makes me feel incredibly selfish!
I've suggested the three of us sit down and talk about it all openly. I know it's ridiculous that we've not done so already, but I'm also sure anyone reading this will understand why we've put it off. My brother is resistant to talking to dad about it - perhaps because he doesn't want to hurt his pride, but also because he doesn't want him to know the changes we're having to make to look after him, because he shouldn't have to feel guilty about his condition!
To anyone who's kindly read this whole post: is there any information/support/ideas with which I could go to this conversation with?