Hello,
I am new to this forum but have been following threads for sometime now. I don't know if I really qualify as a carer as I feel so inadequate compared to all the regulars on the forum, who have devoted themselves to caring for loved ones with AD.
It all started for me last year. My Mum, who has always been very independent (and I guess brought up me and my brother and sister to be the same) had begun to be a bit forgetful (missed my birthday that sort of thing) and some of her friends contacted me saying they were a little concerned about her.
For the past twenty plus years Mum has lived on her own, had a full life of activity with friends, charities and church. Both my brother and sister are abroad and I live a couple of hours away. I used to see her maybe three or four times a year - she would come to stay with us for a weekend (I have a wife and young family).
I went to visit Mum and met with some of her friends who with genuine concern felt that Mum perhaps wasn't really up to living in a such big house (our family home since I was a child) on her own. She was still driving and quite active, but sure seemed to be not as 'with it' as usual.
We all sat down with Mum and talked about what to do. Mum thought it might be a good idea (as did her friends) to move into sheltered housing - having a flat, other flats and other retired people around. We found somewhere, I arranged the move, the sale of her house. In the couple of weeks before the move there had been some warning signs - being a bit muddled about the move - forgetting about where she was moving to etc. She had seen her GP, he had ruled out most medical causes and had referred her to a local specialist. The diagnosis was 'mild memory impairment'. We went ahead with the move.
Within days it became clear that all was not going well - Mum seemed disorientated, more than we had expected.
Two weeks later I had the call from her local hospital - Mum had been found distressed walking in streets near her new home and had been taken by a kind stranger to the local police. She had also 'lost' her car it was not at the flat.
Much happened so quickly - her GP decided it was time to stop driving - this had a devastating impact on Mum's life. I was put in touch with the Intermediate care team from the local social services who were just great. Support from carers was put in place - initially for a few weeks from social services and then I employed a local care provider. It was just half an hour a day to start with, but that seemed to be enough to sort things out.
Mum still went out to many of her activities and her friends have been great visiting her and taking her out. That was last summer.
But that was just the beginning. Mum's condition has deteriated at a frightening rate - ( I have read many of the posts in on the forum written in terms of years what has seemed to happen to Mum in a matter of weeks / months).
Very quickly Mum became anxious and distressed - she could not understand why she couldn't remember things. Tearful outbusts followed, she was so muddled, just inconsolable. Soon she was not coping with some of her day to day needs, so I increased the support she was getting from the care team - first she couldn't cope with shopping on her own, then not eating properly (forgetting to eat/cook), but all the time the distress increased and she has become more muddled.
I have been very lucky with a great care team and lots of support from the local CPNs and specialist consultants.
The time has come however that all this support is not enough, Mum needs and wants the reassurance of someone there to support her all the time. She find it hard to be on her own, and the distress and anxiety has continued to grow so that today it is nearly always just below the surface. Other care issues are beginning to surface too with minor incontinence starting to be a problem.
I have discussed all this with Mum, her care team and the medical team and we are all agreed (inc Mum) that it is best for Mum to look for a residential care home that can provide the support she now needs.
Mum now has a diagnosis of Moderate Alzheimers dementia, and is being treated with Aricept (but with no discernable effect) and a cocktail of other drugs to try and help with her distress at her condition. This week she has been assessed by social services and they have recommended the need for a home registered for dementia care.
Now comes my dilema, do I look for a home near her home town where her friends will still be able to visit and support her, or do I move her to a home near me where I could at least be more in touch with her and her care.
I have tried to help Mum as much as I can over the last year, but I have failed to do much. I have been in constant touch with the carers and handle all her 'business' affairs (I have an EPA) but only manage to visit about once a month (and honestly even that has been difficult). I have a stretching job and family commitments - luckly a very supportive wife - but time is at such a premium I feel ashamed that I have let Mum down.
Mum has many good friends who will visit her and support her if she remains near home; they want her to stay. If I move her to be near me she will lose that friendship and support - but I would be able to see her more regularly than I do now and build a proper relationship with the care home. I have to be realistic though, I would probably not be able to give anything like the time her friends do now.
I just don't know if there is anyone on the forum who has been faced with a decision like this - The outcome has to be right for Mum - I just don't know what the future holds. I just don't know how long Mum will go on being able to recognise her family and friends; so much has already gone - she no longer remembers my father (they were married 35 years before he died in 1984) - her house, her career as a teacher, many of her friends.....
Thanks for listening, it has taken me nearly three weeks to write this, I am thinking about what to do constantly, I just don't want to let Mum down....
Adrian.
I am new to this forum but have been following threads for sometime now. I don't know if I really qualify as a carer as I feel so inadequate compared to all the regulars on the forum, who have devoted themselves to caring for loved ones with AD.
It all started for me last year. My Mum, who has always been very independent (and I guess brought up me and my brother and sister to be the same) had begun to be a bit forgetful (missed my birthday that sort of thing) and some of her friends contacted me saying they were a little concerned about her.
For the past twenty plus years Mum has lived on her own, had a full life of activity with friends, charities and church. Both my brother and sister are abroad and I live a couple of hours away. I used to see her maybe three or four times a year - she would come to stay with us for a weekend (I have a wife and young family).
I went to visit Mum and met with some of her friends who with genuine concern felt that Mum perhaps wasn't really up to living in a such big house (our family home since I was a child) on her own. She was still driving and quite active, but sure seemed to be not as 'with it' as usual.
We all sat down with Mum and talked about what to do. Mum thought it might be a good idea (as did her friends) to move into sheltered housing - having a flat, other flats and other retired people around. We found somewhere, I arranged the move, the sale of her house. In the couple of weeks before the move there had been some warning signs - being a bit muddled about the move - forgetting about where she was moving to etc. She had seen her GP, he had ruled out most medical causes and had referred her to a local specialist. The diagnosis was 'mild memory impairment'. We went ahead with the move.
Within days it became clear that all was not going well - Mum seemed disorientated, more than we had expected.
Two weeks later I had the call from her local hospital - Mum had been found distressed walking in streets near her new home and had been taken by a kind stranger to the local police. She had also 'lost' her car it was not at the flat.
Much happened so quickly - her GP decided it was time to stop driving - this had a devastating impact on Mum's life. I was put in touch with the Intermediate care team from the local social services who were just great. Support from carers was put in place - initially for a few weeks from social services and then I employed a local care provider. It was just half an hour a day to start with, but that seemed to be enough to sort things out.
Mum still went out to many of her activities and her friends have been great visiting her and taking her out. That was last summer.
But that was just the beginning. Mum's condition has deteriated at a frightening rate - ( I have read many of the posts in on the forum written in terms of years what has seemed to happen to Mum in a matter of weeks / months).
Very quickly Mum became anxious and distressed - she could not understand why she couldn't remember things. Tearful outbusts followed, she was so muddled, just inconsolable. Soon she was not coping with some of her day to day needs, so I increased the support she was getting from the care team - first she couldn't cope with shopping on her own, then not eating properly (forgetting to eat/cook), but all the time the distress increased and she has become more muddled.
I have been very lucky with a great care team and lots of support from the local CPNs and specialist consultants.
The time has come however that all this support is not enough, Mum needs and wants the reassurance of someone there to support her all the time. She find it hard to be on her own, and the distress and anxiety has continued to grow so that today it is nearly always just below the surface. Other care issues are beginning to surface too with minor incontinence starting to be a problem.
I have discussed all this with Mum, her care team and the medical team and we are all agreed (inc Mum) that it is best for Mum to look for a residential care home that can provide the support she now needs.
Mum now has a diagnosis of Moderate Alzheimers dementia, and is being treated with Aricept (but with no discernable effect) and a cocktail of other drugs to try and help with her distress at her condition. This week she has been assessed by social services and they have recommended the need for a home registered for dementia care.
Now comes my dilema, do I look for a home near her home town where her friends will still be able to visit and support her, or do I move her to a home near me where I could at least be more in touch with her and her care.
I have tried to help Mum as much as I can over the last year, but I have failed to do much. I have been in constant touch with the carers and handle all her 'business' affairs (I have an EPA) but only manage to visit about once a month (and honestly even that has been difficult). I have a stretching job and family commitments - luckly a very supportive wife - but time is at such a premium I feel ashamed that I have let Mum down.
Mum has many good friends who will visit her and support her if she remains near home; they want her to stay. If I move her to be near me she will lose that friendship and support - but I would be able to see her more regularly than I do now and build a proper relationship with the care home. I have to be realistic though, I would probably not be able to give anything like the time her friends do now.
I just don't know if there is anyone on the forum who has been faced with a decision like this - The outcome has to be right for Mum - I just don't know what the future holds. I just don't know how long Mum will go on being able to recognise her family and friends; so much has already gone - she no longer remembers my father (they were married 35 years before he died in 1984) - her house, her career as a teacher, many of her friends.....
Thanks for listening, it has taken me nearly three weeks to write this, I am thinking about what to do constantly, I just don't want to let Mum down....
Adrian.