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First signs

n 2000 I noticed changes in my husband, Keith’s behaviour when he was in his late 60’s. He had always attended to financial and household needs and was a metal and woodwork hobbyist. Regarding finances, he said “We’ll just leave the papers now” and his workshop was now in chaos. 

Driving became erratic and dangerous; socially he became very difficult which was  completely out of character. It took 2 years and 9 months for a neurologist to confirm my fears and finally diagnose Keith with Fronto-temporal Dementia. Diagnosis brought relief, for now we could begin to help Keith. My lifeline was the education and support groups run by Alzheimer’s Australia. There I learned about legal and medical issues to be planned for.

Through their support groups I was able to meet other carers and realised we all experienced similar emotions - loneliness, exhaustion, irritation, but most of all tremendous grief for the continuing loss of the person that once was. 

Finding care and support

Slowly Keith’s walking began to deteriorate and he started having falls. On admission to hospital for an infection he was diagnosed with Parkinson’s disease in addition to the dementia. In accordance, an Aged Care Assessment Team assessed him, concluding that he now needed a low care package. Carers came for many months during weekdays, giving Keith breakfast, medication, a shower and assistance with dressing. He continued to attend day centres, but after several weeks when he began to have urinary problems, the centres refused to keep him as they said they did not have staff to help him.

However, within 2 months Keith could no longer walk and was wheelchair dependent. He became incontinent and a further assessment revealed Keith needed high care and an EACH-D care package was provided. I continued to work in hospitality weekdays from 4am -8am or a little longer and the EACH-D provider supplied staff well trained in dementia care. They provided an electronic bed, bath, wheelchair, incontinence equipment, an upgraded wheelchair and safety bars around the house.

Later stages

Our service provider had started a long day centre for working carers and suggested Keith attend. After the carer attended to Keith’s needs the Taxi Subsidy Service for Disabled People took Keith to and from the Day Centre. With the help of this service I continued to care for Keith, afternoons, evenings, and weekends. Soon however, I could no longer physically manage to get Keith out of his wheelchair to change his clothing and attend to his needs. Visiting friends and outside activities were no longer possible for me to manage alone, but I continued to have friends visit us on the weekend.

The children and grandchildren came frequently. Keith started having frequent pulmonary and renal infections and became less interested in eating due to difficulty swallowing. Late 2008 Keith developed a severe pulmonary infection and we knew that antibiotics were not effective. The attending doctor respected his Advance Care Directive and kept Keith pain free and comfortable.

I sat beside his bed into the night holding his hand whilst he stroked my arm. His eyes closed, and he slipped away, dying with dignity in our home, together, as he always wanted.

My wish for the others

Without the available community services it would have been impossible to give Keith the best care possible and the ability to remain living at home. It is my deepest wish that people with illnesses who wish to remain at home with community services will be given this support and opportunity. Despite the enormous physical and emotional demands of caring, I draw comfort knowing that I had the support to fulfil my Keith’s wishes.