Canberra's Jane Thompson to discuss dementia, marriage on SBS Insight

Jane was married to her husband Alan Newsome from 1979 to 2007 when he died of Alzheimer's disease aged 72.

Alan, a respected environmental scientist and conservation biologist who had worked with the CSIRO, had been diagnosed with dementia in early 2004 and his decline was rapid - "like he fell off a cliff", Jane says.

"He just stopped doing everything. He just became very dependent on me," she said.

"He became highly anxious very quickly and transformed from someone who was extremely confident, well-travelled, multiple-published researcher to someone who could barely string a sentence together.

"He wouldn't let me out of his sight and he was very confused about who he was. He would often say to me, 'I don't know who I am anymore'."

The couple met originally at the University of Adelaide where Jane was a science student majoring in zoology and Alan, 14 years older, had done his PhD through the same department.

"I guess I always felt a connection, an attraction to him but he was actually married and I was soon to become married to somebody else," she said.

"And then about 10 years later, both of our marriages had broken up and re-met at the University of Sydney where I had gone to do a PhD and he was a senior researcher who had gone back to do a seminar there.

"It's a bit of a funny story because I was sitting in the front row and afterwards somebody said to me, 'You couldn't take your eyes off him, could you?'."

They married, settled in Canberra and had three boys.

Even speaking to Jane briefly, a certain wistfulness is evident in her voice. She still very much loves her husband and desires him. But he is gone. And he was gone in the last years of his life as well.

She says she penned one of her most honest pieces of writing, for Dementia Carers Australia, detailing how she missed the intimacy of their marriage as the dementia took hold.

"Intimacy is the giving and receiving of love and affection but now it feels like a one-way street to me," she wrote at the time.

"I read all the stuff about the importance of touch and retaining intimacy - but it isn't ringing true to me. My feelings are gone. I find it really difficult to retain 'intimacy'. I've transitioned from wife/friend/lover to carer. I wonder whether a carer can also be a lover?"

Jane says she knew nothing about dementia when her husband was diagnosed.

"I thought it was something old people got and they got a bit a forgetful and I didn't know it was a terminal illness and I didn't know what goes on in the brain," she said.

"I felt like I'd been catapulted into a foreign country where I didn't know the language and I didn't have a road map."

She has since learned so much and is now an advocate for public involvement in dementia research. Insight found her through a researcher at Sydney University with whom she had been collaborating.

Alan lived at home with Jane until the last months of life when he moved to residential care.

How did their marriage last even when it was stripped down in the final years to carer and patient?

"It was love," she said.

"And just an enormous sense of responsibility I had to care for him. You actually need to have a really strong foundation to be able to survive that sort of change in a marriage. We had a very strong relationship. He was my best friend and I felt an enormous responsibility to help him.

"I kept thinking, 'I don''t have the skills to cope with this' but you do find you are capable of more.

"One of the most helpful things a friend who had a parent with dementia said to me early on was, 'Just access all the help you possibly can, because you're going to need it'. And I thought, 'That's a funny thing to say'. But she was right.

"And that's the message: You can't do it on your own. You need a lot of help and support. And just understand the disease, why the person is acting a certain way. It's not their fault. Find new ways of communicating and adjust to a completely new relationship with that person."

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