18 Sep The long goodbye – a family’s journey with dementia

Glenda Trotter’s eulogy was a tribute to the beautiful and loved mother, wife, daughter, sister, grandmother, aunt, and friend she was before dementia brutally shut the door to memories that couldn’t be unlocked for the last ten years of her life.

“The disease has finally died and given us back our wife and mother. The door to our memories of her have opened and flooded us with the truth of who she was. Memories that are beautiful and painful but have given us hope. We can now remember her.”*

*(Glenda Trotter Eulogy – read by her children Kylie Owen, Simon Trotter, Melissa McKenzie and Leah Champion)

Dementia touches the lives of millions in Australia every day. Despite this, it’s also one of the most misunderstood and challenging conditions.

Dementia is a catch-all term for a large group of cognitive illnesses and conditions. You can have one or more types of dementia.

Often, we hear people using the terms Alzheimer’s and dementia interchangeably. However, they are not the same. Dementia is an umbrella term used to describe a group of symptoms, and Alzheimer’s is one of the many subtypes of dementia. In fact, there are over 400 types of dementia!

Since dementia is not as common in working-age people, it can often go unnoticed.

This was the case with Glenda, who was diagnosed with younger onset Alzheimer’s in 2010 at 59 years of age. Younger onset Alzheimer’s, also known as early onset Alzheimer’s, is any form of dementia in people under the age of 65. Although dementia is much less common in people under 65, it can be diagnosed in people in their fifties, forties and even thirties. As of 2019, approximately 27247 Australians were living with younger onset dementia.

About two years before Glenda’s diagnoses the family started to see some changes in Glenda, but couldn’t put their finger on it. “Mum would do the administration and work at the front of the shop, Timboon Plumbing, and was always a savvy businesswoman,” Simon said. “Suddenly she started telling me over and over again to do a plumbing job that I kept telling her had been done.”

Kylie remembers blank looks and Glenda trying to control her space. “It was like she was aware that there were gaps, but if you would question something, she would get defensive and want to cover it up,” she said.

Glenda started to lose track of the date and time of year and sometimes where she was and how she got there. “One day mum and I visited our regular shopping centre and she didn’t return after going to the toilets,” Melissa remembers. “It took me a long time to finally find her in a completely different area of the shopping centre and she didn’t know how she got there. It was very scary.”

Glenda knew something was wrong and went to her General Practitioner, but as she had been suffering with long-time menopause symptoms, was taking certain medication from other health issues and an initial Alzheimer test came back clear, it was thought the difficulties must be related to the other health issues. As Glenda attended the appointments by herself, the family wasn’t sure what she would remember about the appointments and if she relayed the correct information.

In 2007 Glenda and husband Steve went on an overseas trip. “Normally mum would come back with all these stories to tell, but this time there was nothing.” Kylie said.  This, and Glenda starting to forget kinder concerts and showing changes in mood and personality, made the family really search for some definitive answers of what was happening with their beloved mother. “I was able to book mum in to attend a specialised clinic in Melbourne,” Leah said. “They diagnosed her with early onset Alzheimer’s and we were told that, realistically mum had 7-8 years. We were naturally devastated and the next couple of years were the worst!”

They all agree that was when the grieving started; day in day out; over and over. “That was really when we lost mum, even though she was still with us.” Melissa said. “We got different versions of her, but she was no longer the mum we knew.”

Kylie describes it as a blind blocking out the sun. “With some forms of dementia, memories still come flooding through, like the sun through a sheer curtain, but with mum it was like a block out blind. Nothing was coming through.”

“The blind would continue to go down,” Simon said. “Sometimes it might stop or even go up a little bit, which would give us hope, but then it would go down even further.”

Glenda started to get very needy and dependent on husband Steve. He worked at the shop and at the same time became Glenda’s carer. Kylie, Simon, Melissa, and Leah wanted to take the weight off their dad and help, but as the disease progressed it made their mum very suspicious about family and caregivers, including TDHS District Nurses and Community Care Workers who were her friends. Steve was the only one Glenda totally trusted.

“There was not much information out there and Dad set up google alerts on his phone for constant up to date treatment options and advice,” Simon said. “That is why, the Caring Role Sessions that are going to be held at TDHS in October, are a fantastic opportunity to get some more information and support. Looking back, some extra information for us would have been really helpful.”

Living in a small community meant there was plenty of support for the family as they went through the different stages of Glenda’s disease. “Mum and Dad had been members of the Lions Club for a very long time, and the Club was very happy for Dad to still come with mum,” Melissa said. “It gave Dad some normality and a safe space where there was no judgement.”

Respite at TDHS and attending their Planned Activity Group (now Social Support Group) also provided support for both Glenda and Steve. “Dad received a lot of support from the community. We needed privacy and confidentiality, but also understanding and empathy and that’s what we got,” Simon said. “The healthcare service offered many hours of support in a safe, caring and loving environment.”

All four kids have an immense appreciation for their dad Steve, who demonstrated an incredible loyalty that comes from the deepest commitment and the amazing love their mum and dad had for each other after being married for 49 years (Glenda passed away 2 days after their wedding anniversary). This sentence from their eulogy says it all: “If you can judge the quality of a man by the way he cares for his wife, then by this standard, Dad, you are solid gold!”

“Mum always used to keep track of the family birthdays, write the cards and get the presents, and when she no longer could do that, Dad took over like a pro,” Leah said. “That couldn’t have been easy.”

In September 2015 Glenda’s disease had progressed to needing ongoing and intensive care and she took up permanent residence at Lyndoch. Within a couple of months, she wasn’t able to hold a conversation anymore.

“We would visit Mum and go with company as she couldn’t participate in the conversation,” Leah said. “You could see she would listen to the conversation, feeling the energy and the fun and her eyes would light up occasionally.”

Glenda passed away in December 2018 at the very young age of 68. After a long goodbye, the family knew their mum was finally at peace and released from her suffering. This opened the door that had been locked for all those years and memories of the amazing mother, wife, daughter, sister, grandmother, aunt, and friend she was, came flooding back through.

When asked to describe their mum in one word, there’s no holding back: loving, hard-working, funny, energetic, resilient, fierce (in love and war), businesswoman, supportive of the underdog, fighter for equality, kind and caring.

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As Simon mentioned, Dementia Australia will be facilitating information sessions “Dementia and Your Caring Role” at TDHS in October; see details in flyer included.

For more information on Dementia, please go to https://www.dementia.org.au/ or you can make an appointment with one of our General Practitioners by contacting Timboon Clinic on 5558 6088.