My mum is 65, has FTD and lives in a care home. She regularly fluctuates between telling me that she hates it and wants to come home to not knowing who I am and being unable to communicate with me.
I had a meeting with her consultant and social worker today who seemingly couldn't care less about my mum's worsening quality of life. Her anxiety, lack of sleep, stealing from others, wandering the home at night, being made anxious by the home's alarm systems, her weight loss (she has gone from a size 18 to a 10 in a year) and her sadness are all just part of the illness and there is nothing they can do to help her. They have also implied that they think I have unrealistic expectations.
But I really don't have unrealistic expectations. My mum has FTD. She is going to get worse and worse and die. She is going to gradually forget us completely, forget how to care for herself, become unable to go to the toilet and then forget how to swallow or breath. I am all too aware of what this disease still has in store for her and for us. But I feel really unwilling to accept that my mum is a lost cause and we should just rule out helping her. I wanted her doctor to suggest ways to help her sleep, another brain scan to see what progression has occurred and how else the NHS could help a patient. Instead I got disdain, no help and the distinct impression I was wasting her time.
Does anyone else find you get a diagnosis of dementia and then no support or on-going support? Any advice anyone can offer would be greatly received!
Thanks
Jo
I had a meeting with her consultant and social worker today who seemingly couldn't care less about my mum's worsening quality of life. Her anxiety, lack of sleep, stealing from others, wandering the home at night, being made anxious by the home's alarm systems, her weight loss (she has gone from a size 18 to a 10 in a year) and her sadness are all just part of the illness and there is nothing they can do to help her. They have also implied that they think I have unrealistic expectations.
But I really don't have unrealistic expectations. My mum has FTD. She is going to get worse and worse and die. She is going to gradually forget us completely, forget how to care for herself, become unable to go to the toilet and then forget how to swallow or breath. I am all too aware of what this disease still has in store for her and for us. But I feel really unwilling to accept that my mum is a lost cause and we should just rule out helping her. I wanted her doctor to suggest ways to help her sleep, another brain scan to see what progression has occurred and how else the NHS could help a patient. Instead I got disdain, no help and the distinct impression I was wasting her time.
Does anyone else find you get a diagnosis of dementia and then no support or on-going support? Any advice anyone can offer would be greatly received!
Thanks
Jo