Margaret and Peter have been together for more than 50 years and, like most couples, have faced many challenges. Having survived the ups and downs of raising three children, they were looking forward to retirement in the country town of Drouin close to their family, watching their four grandchildren grow up and doing some travelling.
However, for the past 10 years Margaret had found Peter’s behaviour growing more “odd”.
One day Margaret arrived home from work to find her husband had cut down all of the trees in their garden; not long after this Peter quit work abruptly, with no explanation.
Margaret would look for household items only to find that Peter had sold them without telling her. As Margaret’s frustration grew, she also had to cope with Peter’s cruel and hurtful comments, only to have him apologise later, saying he had no idea why he said such things.
“I noticed it more when I gave up work, things got so bad that we eventually went to the doctor to ask for help,” Margaret said.
“He was diagnosed with depression but his behaviour continued to get worse. Eventually, my daughter took him to a clinic where they diagnose Alzheimer’s and dementia. There were a lot more tests until he was finally diagnosed with frontotemporal dementia (FTD).”
FTD is an umbrella term used to describe a range of neurodegenerative conditions with a typical onset between the ages of 45 to 65 years. Very little is known about the disease, which is often misdiagnosed, and estimates of its prevalence in Australia range from 3500 to 11,500 sufferers.
The impact of FTD is devastating for sufferers and their families. In layman’s terms, the disease attacks the nerve cells in the brain’s frontal and temporal lobes, causing them to degenerate and shrink. This leads to changes in behaviour, personality and cognitive reasoning.
According to the Association for Frontotemporal Degeneration, symptoms can include socially inappropriate behaviour such as lack of empathy; apathy and depression; problems with reasoning and judgment; and impulsive, even illegal behaviour – including stealing and physical assault.
Because it usually affects younger people, FTD can remain undiagnosed for years and is often misdiagnosed as Parkinson’s disease, bipolar disorder, schizophrenia or even addiction.
Although the diagnosis has helped Peter’s family to understand his condition they have been offered very little hope for the future.
“He is trying a pill at the moment to give him more clarity, it might work, it might not,” Margaret said.
“When living with someone with FTD, every day is different – sad, funny and frustrating.
“At first I used to cry and I was angry – not with him, just with the whole situation. Then reality sets in and you pick yourself up and say ‘OK, we will make it the best we can.’
“My daughter lives close and is a brilliant help, and her children bring him to life playing cards and dominoes, although he gets fed up quite quickly.”
Like many families caring for someone with a degenerative brain disease, grieving for the person they know and love often begins while the person is still alive.
“Peter could make anything, from dolls’ furniture to beds and coffee tables,” Margaret said.
“He was known as one of the best chefs around. He loved crosswords and Sudoku, now he struggles to find a word, let alone spell it.
“He has become a man who won’t go out and doesn’t want people in his house. He follows me from room to room, says and does the oddest of things (vacuuming his head because he has dandruff) and often leaves every other word out of sentences, leaving me to try and guess what he is saying.
“He gets annoyed when I come up with the wrong answer, but his annoyance is not really with me, it’s with himself.
“I can understand his frustration. Since his diagnosis, I have begun to realise there are no answers for either of us.”
To learn more about FTD go to: www.theaftd.org.au/
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