My Mum’s Journey with Lewy Body Dementia – Feb 2015

My 86 year old Mum was  diagnosed with Lewy Body dementia just over 12 months ago. I was working as a doctor in Emergency Medicine in Australia at the time and must confess that I knew very little about this condition as is the case with many professionals who work within the health care system. I have since learned more about this often perplexing and debilitating disease and the affect that it has had on my Mum and her ability to cope with every day activities.
My husband and I left the UK 4 years ago to work in Australia. My Mum had good mental health and was living independently in the family home – my father died of prostate cancer some 20 years ago and Mum had been living alone since his death. We came back to visit her after 18 months and although she was deteriorating physically from her arthritis, mentally she was as bright as a button and had made the decision to sell her house and move in with my elder sister for an interim period whilst she was buying a smaller more manageable home. However shortly after moving in with my sister and brother in law she had what was described as a psychotic breakdown – she started hearing music and voices and became extremely paranoid towards my sister whom she accused of hating her and not wanting her to live with her. This  culminated in my other sister stepping in and taking her away to stay in a holiday cottage where she seemed much more settled but was still hearing voices and talking to imaginary people. A psychiatrist diagnosed her with a depressive illness and she was started on anti depressants. Unfortunately she reacted very badly to these and ended up in hospital with hyponatraemia ( low sodium) and had to stop taking them. Eventually Mum managed to buy a flat and was living independently with much support from my sister who did all of her shopping and visited her on a daily basis. During this period her mental state was very up and down with good days and bad. On some days she would not get out of bed and on others she was holding imaginary parties and making sandwiches for people who did not exist. My sister tells me she had an imaginary friend called Harry Hodgekiss who would phone her every morning to tell her the time. Interestingly Harry has remained with her throughout her illness  but now tends to stay in the back ground.
I visited Mum three times last year from Australia, staying with her in her flat. Interestingly her condition changed on a daily and sometimes hourly basis – she would be almost completely normal on some days and on others would be continually asking me to answer the door or the phone as she was sure that someone wanted to contact her and would talk to imaginary people.  On one of my visits home I asked her GP for a home visit as I was becoming increasingly concerned that she might have dementia. The GP walked into her flat, asked her a few questions and got her to do a few memory tasks and announced to her and me that she most ‘definitely did not have dementia.’ I was not convinced and insisted that he sent her to see a specialist who finally made the diagnosis of probable Lewy Body Dementia.
Mum’s mental and physical condition has slowly deteriorated since that time and after she fell over whilst wondering outside in her nightie on a freezing cold night last February whilst looking for my father she was finally hospitalised for a few weeks before being admitted into full residential care.
My husband and I returned to the UK in May and have visited Mum on a weekly basis since our return. She now lives in a home in Worcestershire which is near to both of my other sisters but is unfortunately a 3 hour round trip for us. During this time we have been amazed by the fluctuations in her mental state which can sometimes occur on an hourly basis. On some days she seems almost completely normal and we will be able to take her out for lunch. On others she will still be in bed and refusing to get up. An hour or two later she will be having full blown conversations with 2 or 3 imaginary people – often her mother or my father.
Many of our visits have been happy ones – she often likes to talk about the past and has a good long term memory. Occasionally she keeps us amused by her insistence that she now works for the BBC and reads children’s stories on radio4. This is  a particularly persistent delusion  which comes up at most of our weekly visits . She has now apparently received an award for her efforts! The other week she calmly announced that as she had a cold she would not be singing at The Royal Albert Hall  afterall and asked us to apologise to all her listeners! This week she had a really good day and managed to do the Daily Mail crossword in sparkling form. She did not talk to any imaginary people and asked her carers to provide us with tea and biscuits whilst chatting about our recent trip to Budapest.
I have decided to write this blog to record our weekly visits to Mum. Lewy Body dementia is a very complex condition which is often very difficult to diagnose and difficult to manage. I hope that by sharing some of the experiences I have  with my Mum that this may help other patients , carers  and health professionals learn more about this debilitating condition.

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