I am new here, so please forgive me, it’s not easy to express how I feel. The positivity I see on this forum is impressive and inspiring, because I couldn’t feel more different. My mum has (in my opinion) been ill for at least 5 years, probably more. She had a neurologist who was lovely, but did not take my concerns seriously, as she was fond of mum and focused on a spinal lesion of unknown origin (red herring) as being the cause of all mum’s difficulties (which she minimised, as if to imply I was “over analysing things). We moved a year ago to be by the sea so that mum could realise a life long ambition and have a good quality of life. This area has a significantly higher number of over 65s than the rest of the UK, but we have since found out dementia services are woefully underfunded by the local CCG, and understandably struggle to provide even an adequate service. Mum was finally diagnosed 2 months ago, put on meds with horrible gastric side effects (she is has double incontinence, so this caused much distress for her and us), but no other support, information or advice. We get little support from Social Services (we accept their limited offer of support which is not appropriate for mum we get nothing). We do not have Admiral Nurses in our area.
I want to campaign for better services and more resources. Bombard the CCG with a rational for funding that they can’t refuse. Lobby the local MPs. But I am exhausted. With the physical care, coping with the delusions and suspicion from a mum how used to love and trust us absolutely.
With the pain of seeing her struggle to move, care for herself in the most basic way, to find the right words and fight off the vicious anxiety and depression she feels. I feel guilty that Infought for a diagnosis, and now she has one, she is left feeling alone and terrified.
I will keep posting and reading and hope it gives me the strength to keep fighting for what should be a given, care for the most vulnerable people in our society, people who happen to be per, but also talented and dedicated doctors, teachers, lawyers, nurses, etc.
I want to campaign for better services and more resources. Bombard the CCG with a rational for funding that they can’t refuse. Lobby the local MPs. But I am exhausted. With the physical care, coping with the delusions and suspicion from a mum how used to love and trust us absolutely.
With the pain of seeing her struggle to move, care for herself in the most basic way, to find the right words and fight off the vicious anxiety and depression she feels. I feel guilty that Infought for a diagnosis, and now she has one, she is left feeling alone and terrified.
I will keep posting and reading and hope it gives me the strength to keep fighting for what should be a given, care for the most vulnerable people in our society, people who happen to be per, but also talented and dedicated doctors, teachers, lawyers, nurses, etc.
