Hi everyone,
I've lurked here for a little while and it's been a bit of a mixed blessing; in some ways nice to know we're not the only ones and in others ways horrible to see how much farther we might have to go.
My sisters & I were told at the beginning of last year that our mum, who was only 66 at the time, had Alzheimer's and vascular dementia - it seems that the doctor had known for around 2 years but hadn't passed the information on to us. Nor to our mother, who has never been told (she is now past the point of understanding anyway). He had even told my sister and my mother, when they went for the results of an MRI scan, that nothing abnormal was seen, though as it turns out this was a lie. Not sure why he did it and don't see the point in getting annoyed about it, it wouldn't have changed anything really.
At that point mum was still self-caring, one of my sisters lived just round the corner from her and went in most days to see how she was doing, and we thought it would continue in this vein for some time. She knew something was wrong, she knew she was confused, depressed and forgetful, just not that it was all being caused by Alzheimer's. We had a big debate because she had said, quite clearly, that if she found out she had Alzheimer's then she would kill herself. She meant it. We collectively decided not to tell her - we still don't know whether this was the right thing to do, but that's what we did.
I went away travelling in September, something I'd been planning since before her diagnosis. I kept in regular touch (thank goodness for Skype) and could hear she was declining with every phone call. To cut a long story short, when my sister went away on holiday, social services did an assessment and judged she was unable to look after herself so she was offered respite care in a home specialising in dementia for the 2 weeks. She was offered a permanent place in the home as soon as she got there, as it was clear she was in need of care 24/7.
I was devastated when she went into the home, but also relieved that the burden was not on my sisters anymore to look after her in her own home. She was stick thin, because she didn't eat unless she was actually presented with something, or she'd eat something inappropriate (like still frozen garlic bread). She thought she had invisible people living in her house, including a woman who looked just like her who lived in her bedroom mirror. She she said hated this woman and wanted to kill her. But knowing she'd deteriorated so fast and far was hard to bear. I'm actually so glad I wasn't there when she went in, because she still had periods where she was relatively compus mentas at the time, and thinking of how scared she must have been to know where she was and why is unbearable. She'd packed a bag initially and tried to abscond over the garden wall. I really don't know how I'd have coped with it. But now she's beyond all that.
I came back from travelling just over a month ago and saw her for the first time in a year. It was beyond awful. My mother is just not there anymore at all - it's just a strange person who speaks total gibberish in my mother's voice, and lives in a much older version of my mother's body.
The main problem is that she is that she is still fairly young - 68 now - and physically fairly fit. She is quite a handful for the staff at the home: she sets off the fire alarms and the fire extinguishers! She shouts, tries to kick in locked doors and hits other people! She has also got herself a boyfriend in the home, another resident, and she will hold hands with him all the time and snog him - tongues and all - in front of us. She has been found in bed with him on several occasions by the staff. As someone who was single for 20 years before this and was very vocal about her dislike of the opposite sex, this is quite a turnabout and a sharp reminder to us of how she's changed! She's settled in very well to the home and now doesn't want to leave even when she has the opportunity to go out visiting somewhere. She says she has to look after all the 'children' (the other residents).
For me, the worst thing of all is seeing my mother in this home, which is full of (and I apologise so much for this, I hope this does not offend anyone) proper old people with severe dementia, some of whom do nothing but sit and say 'lalalallala' all day; seeing her in this environment and knowing that she actually fits in there, well that's the worst thing. It seems surreal that she should belong there, she's still so young and was such a forceful character. The thought that I haven't yet had children, and that if I do have a family now, she will never know me as a mother, and my children will never know her, is heartbreaking. At least I can take comfort in the knowledge that she seems happy there, with her boyfriend, with lots of clothes to fold (her new favourite thing) and her 'children' to look after and know that if I'm there to visit, fine, and if I'm not, she doesn't even know or care I'm not there.
I'm off travelling again in 6 weeks time; I'll be gone for another year. I'm trying to get on with my life - I shall continue to call her and get regular updates from my sisters and I know that if I need to come back I shall. I feel guilty for leaving again, but I know that my usefulness in terms of her care is extremely limited.
Phew. So that's me and my mother. Hello everyone and thanks for letting me join you.
Mia
I've lurked here for a little while and it's been a bit of a mixed blessing; in some ways nice to know we're not the only ones and in others ways horrible to see how much farther we might have to go.
My sisters & I were told at the beginning of last year that our mum, who was only 66 at the time, had Alzheimer's and vascular dementia - it seems that the doctor had known for around 2 years but hadn't passed the information on to us. Nor to our mother, who has never been told (she is now past the point of understanding anyway). He had even told my sister and my mother, when they went for the results of an MRI scan, that nothing abnormal was seen, though as it turns out this was a lie. Not sure why he did it and don't see the point in getting annoyed about it, it wouldn't have changed anything really.
At that point mum was still self-caring, one of my sisters lived just round the corner from her and went in most days to see how she was doing, and we thought it would continue in this vein for some time. She knew something was wrong, she knew she was confused, depressed and forgetful, just not that it was all being caused by Alzheimer's. We had a big debate because she had said, quite clearly, that if she found out she had Alzheimer's then she would kill herself. She meant it. We collectively decided not to tell her - we still don't know whether this was the right thing to do, but that's what we did.
I went away travelling in September, something I'd been planning since before her diagnosis. I kept in regular touch (thank goodness for Skype) and could hear she was declining with every phone call. To cut a long story short, when my sister went away on holiday, social services did an assessment and judged she was unable to look after herself so she was offered respite care in a home specialising in dementia for the 2 weeks. She was offered a permanent place in the home as soon as she got there, as it was clear she was in need of care 24/7.
I was devastated when she went into the home, but also relieved that the burden was not on my sisters anymore to look after her in her own home. She was stick thin, because she didn't eat unless she was actually presented with something, or she'd eat something inappropriate (like still frozen garlic bread). She thought she had invisible people living in her house, including a woman who looked just like her who lived in her bedroom mirror. She she said hated this woman and wanted to kill her. But knowing she'd deteriorated so fast and far was hard to bear. I'm actually so glad I wasn't there when she went in, because she still had periods where she was relatively compus mentas at the time, and thinking of how scared she must have been to know where she was and why is unbearable. She'd packed a bag initially and tried to abscond over the garden wall. I really don't know how I'd have coped with it. But now she's beyond all that.
I came back from travelling just over a month ago and saw her for the first time in a year. It was beyond awful. My mother is just not there anymore at all - it's just a strange person who speaks total gibberish in my mother's voice, and lives in a much older version of my mother's body.
The main problem is that she is that she is still fairly young - 68 now - and physically fairly fit. She is quite a handful for the staff at the home: she sets off the fire alarms and the fire extinguishers! She shouts, tries to kick in locked doors and hits other people! She has also got herself a boyfriend in the home, another resident, and she will hold hands with him all the time and snog him - tongues and all - in front of us. She has been found in bed with him on several occasions by the staff. As someone who was single for 20 years before this and was very vocal about her dislike of the opposite sex, this is quite a turnabout and a sharp reminder to us of how she's changed! She's settled in very well to the home and now doesn't want to leave even when she has the opportunity to go out visiting somewhere. She says she has to look after all the 'children' (the other residents).
For me, the worst thing of all is seeing my mother in this home, which is full of (and I apologise so much for this, I hope this does not offend anyone) proper old people with severe dementia, some of whom do nothing but sit and say 'lalalallala' all day; seeing her in this environment and knowing that she actually fits in there, well that's the worst thing. It seems surreal that she should belong there, she's still so young and was such a forceful character. The thought that I haven't yet had children, and that if I do have a family now, she will never know me as a mother, and my children will never know her, is heartbreaking. At least I can take comfort in the knowledge that she seems happy there, with her boyfriend, with lots of clothes to fold (her new favourite thing) and her 'children' to look after and know that if I'm there to visit, fine, and if I'm not, she doesn't even know or care I'm not there.
I'm off travelling again in 6 weeks time; I'll be gone for another year. I'm trying to get on with my life - I shall continue to call her and get regular updates from my sisters and I know that if I need to come back I shall. I feel guilty for leaving again, but I know that my usefulness in terms of her care is extremely limited.
Phew. So that's me and my mother. Hello everyone and thanks for letting me join you.
Mia
. If her friendshop with this gentleman helps her, then that is part of her new life.
