Michael and Joan

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Michael grew up in the South-West of England, living in the fishing villages of Cornwall and Devon. 

He enjoyed an active outdoor life.

A natural ability in art took him to art college, which was then interrupted by his conscription to the British Air-Force, where he was chosen to be a Fitness Instructor. From there he was recruited to be trained in the newly developed Diploma in Remedial Gymnastics, to help rehabilitate severely disabled ex-servicemen.

He eventually took this training on invitation, to a new rehabilitation unit at the Prince Henry Hospital at Little Bay, Sydney, where he became the first Remedial Gymnast in Australia.

Michael married Joan in 1975 and in 1983, their daughter Kim was born, followed by Andrew in 1986. Family life in the following years was filled with outdoor activities including camping, bushing walking and skiing. Michael then decided to rebuild an old wooden catamaran.

First signs:

Somehow, the work on the catamaran never quite finished.There were lots of start/stop times, with the gaps between working on the boat becoming longer. Michael seemed to slowly lose interest and became less focused and organised. He no longer went out at 5.30 a.m. on the weekend to play golf.  His memory was less reliable. He became frustrated and then concerned!   

We sought medical guidance and after a couple of misdiagnoses, including depression, Michael was given a 'provisional diagnosis' (as you can only get a definitive diagnosis of dementia through an autopsy) of Fronto-temporal dementia in 2001 through a PET Scan.

We were stunned! Shocked! Devastated!

Kim and Andrew were in their teens and still at school. Michael could no longer work. I was working full-time supporting the family, including paying the mortgage.

Receiving services: 

We supported Michael at home through the early stages of the condition, but by the end of 2005, we had to enlist the support of an increasing number of dementia respite services, to take him on outings during the day, while we were at work and school/university. 

By the end of 2008, we had five different services coming in to help look after him during the working week. Each service operating with a small ratio of hours.

By mid 2009, Michael had developed Behavioural and Psychological Symptoms of Dementia (BPSD). He was hallucinating, delusional and had reversal of sleep-wake patterns. He had begun ‘wandering’ and on one occasion, went missing overnight for 14 hours. With police assistance, he was eventually found 8 kilometres away.

Personal care was becoming problematic and aggression an increasing challenge. When we lost 3 days of services, due to funding restructures, we had to make the monumentally difficult decision of placing Michael in residential care.

Residential care:

We visited each night and brought Michael home on Sundays. But his behaviour became more challenging in residential care and he was given antipsychotics.

He deteriorated; was hospitalised three times with acute medical conditions; and after the third admission he was declared palliative. I left my employment and accessed my superannuation. I then brought Michael home and we looked after him 24/7 until he died on 5 December 2010.  

It was profoundly sad, but we were very grateful we had brought him home to be with us for his last five months, and to die at home with us.

Michael was a beautiful man with a love of life, a versatile intelligence and a great generosity of spirit. He was a warm, devoted family man. Michael did not fit any of the risk criteria for developing dementia.

He coped with a savage condition with great courage and personal dignity. We learned a great deal about the condition and about ourselves through Michael’s experience of his neurodegeneration. Kim, Andrew and I support any efforts to help make the experience of living with the impact of this condition better.

Families need and deserve all the support the community can give.

But, most of all, the person with dementia deserves to live a life of happiness and personal security whilst living with what this disease will bring.