Hello,
This is the first time I've posted on here, and I would really value some advice from people. My hubby and I are in a horrible position as both of our mums have recently diagnosed dementia. My mother-in-law, who is nearly 70 has moderate Alzheimers, and seems to be getting reasonable support from her doctors, and great support from her hubby who is also retired. My mum's situation, is much worse - she is just 60, and we have been fighting to get her condition diagnosed since 2004, although before then we knew that things were not right. She is now on Consultant Number 8, having seen 2 psychiatrists, 2 psychologists, an endocrinologist and 3 neurologists so far. She has had scans galore, and we are currently waiting for the results of a notch 3 test to (hopefully) rule out cadasil, and she is also supposed to be going for a skin biopsy, although they have cancelled twice so far. Most of these specialists have been seen privately in a bid to speed things up!
The trouble is, 4 years down the line we know she has dementia, but we don't know the cause, and because we don't have a proper 'label' she is not getting any support, and because we are new to all this, we don't know where to go for help. While all this is going on mum is getting worse, and dad feels her deterioration is getting faster.
My dad is still working, he has a high powered full time job, and I live 150 miles away from them and have a 18 month old son to take care of, as well as working and having my own health issues. My dad isn't coping - he gets angry and frustrated because as well as working he has to do everything, and he feels totally let down by the medical and allied professions. Their GP practice has been at best appalling. When my dad first took my mum to see her gp, she was pretty nervous, and my gp diagnosed depression, but as a precaution referred her. Two weeks later I took her to the doctors and she wasn't nervous so was much more chatty and more together. The GP then decided that mum's illness was psychological and due to my dad being a bully, and since then she has been practically hostile to my dad, even going as far as (I suspect) wilfully neglecting his medical care (not following up hospital advice after my dad had a suspected TIA). We are too frightened to complain because we will need them to help us. My poor dad is at the end of his tether - he's getting no help, no support, and I can't offer much than an ear on the end of the phone and a lovely grandson to visit.
Mum's condition is weird, it seems far more generalised than a pure memory loss, and she doesn't really comprehend the implications of her condition, and feels fine in herself. She is quite happy in herself, but is beginning to need more in the way of care. My dad is a lovely man (and not a bully), but he is just not cut out to be a carer - it would destroy him, or drive him to do something silly.
Has anyone got any ideas as to how we can access support while we are waiting? Dad has contacted his local branch, but they just told him to come to a meeting, and he doesn't feel able to do that, and I don't think he wants to until we know exactly what mum has in case it is something reversible (doubtful).
Sorry for the essay, but it has helped to tell someone. I am going nuts up here in Yorks because I can't do anything to help, and my dad's phone calls all the time with doom and gloom are really hard to bear.
Sending best wishes to you and yours, and thanks for reading so far.
Arightcat
PS this is a very abridged version of what has gone on - especially the bit about how rubbish the gp practice has been.
This is the first time I've posted on here, and I would really value some advice from people. My hubby and I are in a horrible position as both of our mums have recently diagnosed dementia. My mother-in-law, who is nearly 70 has moderate Alzheimers, and seems to be getting reasonable support from her doctors, and great support from her hubby who is also retired. My mum's situation, is much worse - she is just 60, and we have been fighting to get her condition diagnosed since 2004, although before then we knew that things were not right. She is now on Consultant Number 8, having seen 2 psychiatrists, 2 psychologists, an endocrinologist and 3 neurologists so far. She has had scans galore, and we are currently waiting for the results of a notch 3 test to (hopefully) rule out cadasil, and she is also supposed to be going for a skin biopsy, although they have cancelled twice so far. Most of these specialists have been seen privately in a bid to speed things up!
The trouble is, 4 years down the line we know she has dementia, but we don't know the cause, and because we don't have a proper 'label' she is not getting any support, and because we are new to all this, we don't know where to go for help. While all this is going on mum is getting worse, and dad feels her deterioration is getting faster.
My dad is still working, he has a high powered full time job, and I live 150 miles away from them and have a 18 month old son to take care of, as well as working and having my own health issues. My dad isn't coping - he gets angry and frustrated because as well as working he has to do everything, and he feels totally let down by the medical and allied professions. Their GP practice has been at best appalling. When my dad first took my mum to see her gp, she was pretty nervous, and my gp diagnosed depression, but as a precaution referred her. Two weeks later I took her to the doctors and she wasn't nervous so was much more chatty and more together. The GP then decided that mum's illness was psychological and due to my dad being a bully, and since then she has been practically hostile to my dad, even going as far as (I suspect) wilfully neglecting his medical care (not following up hospital advice after my dad had a suspected TIA). We are too frightened to complain because we will need them to help us. My poor dad is at the end of his tether - he's getting no help, no support, and I can't offer much than an ear on the end of the phone and a lovely grandson to visit.
Mum's condition is weird, it seems far more generalised than a pure memory loss, and she doesn't really comprehend the implications of her condition, and feels fine in herself. She is quite happy in herself, but is beginning to need more in the way of care. My dad is a lovely man (and not a bully), but he is just not cut out to be a carer - it would destroy him, or drive him to do something silly.
Has anyone got any ideas as to how we can access support while we are waiting? Dad has contacted his local branch, but they just told him to come to a meeting, and he doesn't feel able to do that, and I don't think he wants to until we know exactly what mum has in case it is something reversible (doubtful).
Sorry for the essay, but it has helped to tell someone. I am going nuts up here in Yorks because I can't do anything to help, and my dad's phone calls all the time with doom and gloom are really hard to bear.
Sending best wishes to you and yours, and thanks for reading so far.
Arightcat
PS this is a very abridged version of what has gone on - especially the bit about how rubbish the gp practice has been.
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