I have just registered and am very encouraged to think that I may have found somewhere to share experiences and maybe get support and advice.The story so far is long and complex but here goes..
My mother was diagnosed with Alzheimers in 1996, but my father did not tell my brother and I until 2002, when he was forced to give us an explanation after I had threatened to take mum to the doctors myself. He had, until then, constantly told us lies about diagnosis and treatment.
Over the past 5 years my parents have continued to live in their own home, supported by a P.A. each, (my father is blind) thanks to the direct payment scheme. Obviously the hours have increased with mum's need, but in the last 2 years she has been sectioned and taken into the psychiatric unit of their local hospital for long stay on 2 occasions.
My father is a controlling and arguementative man and I have considerable difficulty coping with him. The way he speaks to me and undermines me has taken it's toll, and after discussion and support from my husband, daughters and brother, has resulted in me only visiting them on a once a week basis since last year. My husband and I live 70 miles away.
I have tried continually to help, mostly in an organisational or research capacity as I am not good with dealing with mum's personal needs, but as a retired business woman have good administrative skills. Dad either say's he knows or has already done whatever I suggest, or lectures me on how it won't work/can't be done. It is only since mum was first taken into hospital 2 years ago that I have met the visiting psychiatric nurse, consultant and social worker and learned more about the care package, as dad has always said he was told by the consultant that everything was confidential therefore I couldn't be told.He also threatened not to allow me to see mum if I ever contacted them, or any other member of her care team; but it was one threat I did ignore.
I must say that my brother has been treated the same way but is more than a match for dad and therefore stands up to him. This can result in dad being even more secretive but my brother does share anything he gets to know with me.
Unfortunately his attitude means we go through P.A's rather quickly! We do have a wonderful P.A. who has been with them a couple of years for 20 hours pw but as for the rest..... well for example, one lady lasted a day and a half last week!!!!I have been trying for a long time to get dad to think about 24 hour care at home and he refuses on the basis that mum doesn't want people over night - in fact if he doesn't like or want to consider something he always say's it is mum who won't accept it.
I made the mistake a couple of years ago of suggesting they have a couple of weeks respite together in a care home close to me. It was a disaster with dad complaining it wasn't up to his 5 star hotel standards as soon as he arrived and mum escaping, which resulted in her being sectioned the first time.Dad, of course, holds me completely responsible and doesn't let me forget it!
Dad has put up with a great deal and I do understand and respect his actions are born out of a fierce protection of mum and her illness.
It's also fair to say I suspect he was in denial for a long time, he has his own disability which he manages magnificently and he adores mum so sacrifices himself and his own needs, even though he gets physically abused when she has an "attack".
I have repeatedly told dad there are 2 people to be considered here and that he deserves some quality of life.
The last few weeks have been very difficult for him, carers not staying and mum being aggressive and after one particularly bad night 2 weeks ago, he rang the social worker which resulted in the social worker convincing dad he needed rest and suggesting mum go into a local nursing home for a week. Dad didn't of course tell us this but I completely agree and think it has been a success.
Whilst mum was away dad managed to replace the carer who left and she started last Tuesday - she rang in sick yesterday which is usually the first sign they don't want to continue.
This is the very first time I have spoken about all of this apart from with my husband and daughters and I would be very grateful to anyone who may have been in this position and who may be able to offer me some advice.
If nothing else it has helped alot to write it down. Thanks
My mother was diagnosed with Alzheimers in 1996, but my father did not tell my brother and I until 2002, when he was forced to give us an explanation after I had threatened to take mum to the doctors myself. He had, until then, constantly told us lies about diagnosis and treatment.
Over the past 5 years my parents have continued to live in their own home, supported by a P.A. each, (my father is blind) thanks to the direct payment scheme. Obviously the hours have increased with mum's need, but in the last 2 years she has been sectioned and taken into the psychiatric unit of their local hospital for long stay on 2 occasions.
My father is a controlling and arguementative man and I have considerable difficulty coping with him. The way he speaks to me and undermines me has taken it's toll, and after discussion and support from my husband, daughters and brother, has resulted in me only visiting them on a once a week basis since last year. My husband and I live 70 miles away.
I have tried continually to help, mostly in an organisational or research capacity as I am not good with dealing with mum's personal needs, but as a retired business woman have good administrative skills. Dad either say's he knows or has already done whatever I suggest, or lectures me on how it won't work/can't be done. It is only since mum was first taken into hospital 2 years ago that I have met the visiting psychiatric nurse, consultant and social worker and learned more about the care package, as dad has always said he was told by the consultant that everything was confidential therefore I couldn't be told.He also threatened not to allow me to see mum if I ever contacted them, or any other member of her care team; but it was one threat I did ignore.
I must say that my brother has been treated the same way but is more than a match for dad and therefore stands up to him. This can result in dad being even more secretive but my brother does share anything he gets to know with me.
Unfortunately his attitude means we go through P.A's rather quickly! We do have a wonderful P.A. who has been with them a couple of years for 20 hours pw but as for the rest..... well for example, one lady lasted a day and a half last week!!!!I have been trying for a long time to get dad to think about 24 hour care at home and he refuses on the basis that mum doesn't want people over night - in fact if he doesn't like or want to consider something he always say's it is mum who won't accept it.
I made the mistake a couple of years ago of suggesting they have a couple of weeks respite together in a care home close to me. It was a disaster with dad complaining it wasn't up to his 5 star hotel standards as soon as he arrived and mum escaping, which resulted in her being sectioned the first time.Dad, of course, holds me completely responsible and doesn't let me forget it!
Dad has put up with a great deal and I do understand and respect his actions are born out of a fierce protection of mum and her illness.
It's also fair to say I suspect he was in denial for a long time, he has his own disability which he manages magnificently and he adores mum so sacrifices himself and his own needs, even though he gets physically abused when she has an "attack".
I have repeatedly told dad there are 2 people to be considered here and that he deserves some quality of life.
The last few weeks have been very difficult for him, carers not staying and mum being aggressive and after one particularly bad night 2 weeks ago, he rang the social worker which resulted in the social worker convincing dad he needed rest and suggesting mum go into a local nursing home for a week. Dad didn't of course tell us this but I completely agree and think it has been a success.
Whilst mum was away dad managed to replace the carer who left and she started last Tuesday - she rang in sick yesterday which is usually the first sign they don't want to continue.
This is the very first time I have spoken about all of this apart from with my husband and daughters and I would be very grateful to anyone who may have been in this position and who may be able to offer me some advice.
If nothing else it has helped alot to write it down. Thanks
