Hi all,
I was wondering if I could find an lifeline on here or any feedback about similar stories to stop feeling so isolated and distressed!
My story started 2 years ago when I became the primary carer for my mother at the age of 28 yrs old, who was diagnosed with frontal temporal lobe dementia at the age of 67 years old. Since then she has been sectioned twice totalling approximately 6 months over the last 2 years but remains "cared" for in the community under the local old age community psychiatric team.
She has been unable to drive, cook, wash herself or her clothes/sheets and gets confused about her medications even though she has a dosett box. The house she lives in is in a horrid mess. Not to mention the increasing deterioration in the unpredictable nature of her behaviour and aggressive/agitated outbursts. All our local taxi companies refuse to take her as she assaulted numerous drivers.
Her three times per day package of care was cancelled by social services as she wouldn't let agency carers into the house. Furthermore, given their lack of knowledge about dementia, especially the sub type my mother has, they actually aggregated my mother's difficult behaviour. She has had best interest meetings after best interests meetings where no action points or improvements to her care are ever made, we go round in circles and social services use the same excuse over and over again "she refuses help, we can't force her" even though she has been deemed to have fluctuating capacity, and certainly from the evidence I have collated over the last 2 years, as her only NOK, I feel she does not have capacity to live independently.
She is getting worse and I am horrified to see what an awful quality of life she has, yet I am torn by what seems to be an ongoing excuse by social services that she just has to "be left, as she refuses all help". This is a symptom of her dementia - she doesn't think anything is wrong with her as she lacks insight due to her dementia.
She has simply been put of risperidone and left.
Is this the way it should be? Is this the way we care for all our dementia patients in the community? Does the fact that my mother has no assets or savings play a part in how she is being managed I.e. she could never self fund for her care. I have been asked this question time after time by social services at best interest meetings and always wondered the significance?
I am absolutely heartbroken over loosing my mother to such an evil disease but then to have obstacle after obstacle in your way when trying to ensure their best interests are upheld and that they have the best quality of life, is soul destroying.
I was wondering if I could find an lifeline on here or any feedback about similar stories to stop feeling so isolated and distressed!
My story started 2 years ago when I became the primary carer for my mother at the age of 28 yrs old, who was diagnosed with frontal temporal lobe dementia at the age of 67 years old. Since then she has been sectioned twice totalling approximately 6 months over the last 2 years but remains "cared" for in the community under the local old age community psychiatric team.
She has been unable to drive, cook, wash herself or her clothes/sheets and gets confused about her medications even though she has a dosett box. The house she lives in is in a horrid mess. Not to mention the increasing deterioration in the unpredictable nature of her behaviour and aggressive/agitated outbursts. All our local taxi companies refuse to take her as she assaulted numerous drivers.
Her three times per day package of care was cancelled by social services as she wouldn't let agency carers into the house. Furthermore, given their lack of knowledge about dementia, especially the sub type my mother has, they actually aggregated my mother's difficult behaviour. She has had best interest meetings after best interests meetings where no action points or improvements to her care are ever made, we go round in circles and social services use the same excuse over and over again "she refuses help, we can't force her" even though she has been deemed to have fluctuating capacity, and certainly from the evidence I have collated over the last 2 years, as her only NOK, I feel she does not have capacity to live independently.
She is getting worse and I am horrified to see what an awful quality of life she has, yet I am torn by what seems to be an ongoing excuse by social services that she just has to "be left, as she refuses all help". This is a symptom of her dementia - she doesn't think anything is wrong with her as she lacks insight due to her dementia.
She has simply been put of risperidone and left.
Is this the way it should be? Is this the way we care for all our dementia patients in the community? Does the fact that my mother has no assets or savings play a part in how she is being managed I.e. she could never self fund for her care. I have been asked this question time after time by social services at best interest meetings and always wondered the significance?
I am absolutely heartbroken over loosing my mother to such an evil disease but then to have obstacle after obstacle in your way when trying to ensure their best interests are upheld and that they have the best quality of life, is soul destroying.