Dementia in my family

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Dad is living with dementia

Lucie and Anabel

“At the end of 2005, moments after arriving home from schoolies, mum and dad called us into the lounge room for a 'talk' and then proceeded to tell us that dad had dementia."

Apart from being extremely stunned, our main memory of that day was an overwhelming sense of relief – thank goodness it’s not cancer. Little did we know what a diagnosis of dementia actually meant, what was ahead, or how isolating a diagnosis of an old person’s disease was going to be. Our experience and knowledge of dementia was very limited. We had a grandmother who had Alzheimer’s disease but we were quite young and she was in her early 80s. We thought your memories just slowly faded away and that was it. Boy how wrong were we!
“Dad was an electrician by trade and was one of those men who could build or fix anything. He was extremely intelligent and at the time of his diagnosis was a project manager for an engineering company in charge of projects worth millions of dollars. He was an amazing father and was always very involved in our lives as well as being a very supportive husband to mum.
“Dad was diagnosed with a variation of dementia which affects people under 65. There is no cure, no treatment and dad is very close to becoming mute. It is very different from most people’s experience with dementia, which most associate with memory loss, like not knowing who people are. But after eight years, his memory is only just starting to be affected, with dad’s primary deficits being in language with dramatic changes in personality and behaviour.
“It has greatly affected his ability to understand the meaning of words, for example, he knows what a cup is but he does not know the word for it and does not understand the word if he hears it. He can no longer read or write and can hardly understand a single word we say and himself has an extremely hard time communicating. His vocabulary has basically been reduced to a few key words and phrases that make no sense when used in any context and is left up to us to guess what he’s trying to communicate.
“To us, our dad died years ago and we live with a stranger who looks exactly like our dad but our loss isn’t recognised by society because he is physically still here. It is not a quick death. It is a slow, painful and tortuous way to watch our dad leave this world.
“Our grief is continuous and at times feels never ending with no closure, no chance to move on, just a physical reminder that dad is still with us as he continues to deteriorate. We grieve for what he has lost, for what our mum has lost and what we have lost both present and future.
“Transitioning from having a father who constantly showered us with love and praise and thought we could do no wrong, to a father who is cold, lacking in empathy and love, who tells us we look ugly, stupid, fat and at times has been physically aggressive, has definitely taken its toll. It takes a lot of skill to not take things personally and sometimes it’s easy and we can laugh it off. Other times we end up curled up in the foetal position.
“We cannot describe the relief we felt being able to draw on the strength, knowledge and support from our amazing Alzheimer’s Australia key workers who have helped to guide us through our pain, grief and complex situations throughout our journey. It has been amazing to be able to share stories and not have to explain anything because they just get it. We can share things and make jokes without being judged and to have people to share this hell with has been invaluable.
“The services provided by Alzheimer’s Australia have been a continued source of support and education. When dad was first diagnosed we borrowed books and videos from their library to help educate ourselves about the disease as well as locating valuable information on their website. We have also frequently relied on their counselling service which has been a life saver, helping us to navigate the muddy waters of dementia.
“This amazing organisation has really made a huge difference in our lives and we will be forever grateful for all they have done for us and the thousands of other families just like us”.