"Becoming a Dementia Carer"

About: Guy's and St Thomas' NHS Foundation Trust South London And Maudsley NHS Foundation Trust Southwark / Southwark Social Services

(as a carer),

My mother's GP and Guy's hospital were very quick to refer Mum to SLaM due to hallucinations and delusions which seemed to come out of nowhere. A SLaM registrar then visited Mum at home and gave us an initial diagnosis of dementia with Lewy Bodies and prescribed medication which was a massive help to my father and myself as she had far fewer hallucinations. The doctor also said Mum should have an MRI scan (among other tests) to confirm the diagnosis and went out of his way to persuade her to have it by asking a radiographer to call her to reassure her that it would be painless and they could help ease her claustrophobia by playing music to her.

We were also visited by the OTs and clinical psychologist from SLAM. My mother enjoyed the lengthy visit from the psychologist to assess her memory etc.

However my Mum was already frail partly as a result of the dementia and because she had just overcome successful treatment for breast cancer. As she usually uses patient transport to get to and from Guy's (for her follow-up post-cancer appointments) we expected there would be patient transport to the Maudesley for the MRI. However there isn't (and the doctor himself felt it was "discriminatory" and was unable to help). Eventually my father and I were able to persuade her to be driven by us to the Maudesley for the MRI (and to be helped up to our first floor flat) but we still don't understand how someone with dementia should be expected to make their own way to a hospital, especially if they are already frail - she couldn't have done it if she had been on her own.

After the MRI scan and a psychological test the doctor confirmed the diagnosis - which my mother is still in denial about - but is now relatively stable thanks to her medication. After the verbal diagnosis, this was confirmed in writing.

The denial of course makes my job like those of other carers very difficult. I have kept a diary detailing the challenges of looking after my mother, which has helped me to recap how things have progressed.

Of course there are other aspects to treating and managing any form of dementia, clinical diagnosis and subsequent treatment is part of a package. Southwark Council have been supportive in some ways, they gave me information and referred me for benefits advice, carers support and home adaptations via their OT. However just as we were frustrated by the lack of patient transport to the Maudsley Hospital we were also frustrated by inexplicable red tape.

Social Services advised us to apply for blue badge from the Southwark Council website when I spoke to them following my mother’s diagnosis. The form was duly completed, a month later I was contacted by the Council stating that my mother needed to be assessed by someone independent from the council but neither the information from the Occupational Therapist from SLAM nor the consultant at Guy’s Hospital Old Age Assessment unit would be acceptable. We therefore had to go to a third party for the independent assessment – this all takes time and adds stress for people less able to deal with it.

Another example of the frustration was when my case was “deallocated” after the care worker could not raise me on the phone as I was away for a short period.

If anything I wish it was all more integrated - as I was able to give up work and live off Carer's allowance because I have another income I could spend the time doing all the chasing. I wonder how do people who are still working or the elderly manage? Carers shouldn't have to keep notes and keep chasing for services to which their relatives are entitled.

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