During the past 12 months I’ve learnt more about dementia than I ever wanted to. Ma’s deterioration has led me to research and learn as much about this syndrome as possible. After being seen by several Geriatricians, Ma is still undiagnosed. Yet, her doctor and I remain convinced she has dementia, probably Lewy Bodies. When I think back through my childhood I now realise the friends of Dad’s that were ‘acting funny’ had dementia.
As a kid growing up with older parents, Ma was 40 when she had me and Dad was 50, I was always worried my parents would die earlier than other ‘normal’ kids (ie kids with younger parents). My parents like to tell the story of the day they found me crying my heart out in my room. When they asked me why I was crying, I responded, “you’re going to die soon”. Such was my worry of having older parents.
My parents were very active socially, Dad belonging to Rotary and Ma to Innerwheel. They were always entertaining or going out to different functions. In this way my sister and I were exposed to a variety of people from a very early age.
There was a man that was fixated on Dad and would visit him at every opportunity, presenting him with various gifts. Dad’s best friend, who was a very highly strung man, one day visited and was convinced that he’d just disembarked from a warship and that Ma and I were there to greet him.
I will always remember a good friend of Dad and Ma’s visiting after she’d been diagnosed with Alzheimer’s. She was my first real introduction to the disease. She sat in a chair and tried to carry out a conversation. She would become stuck for words and then shake her head and say, ‘no, no’. It broke your heart to realise that she knew what was happening to her. She knew that she would soon forget who she was.
It was about this time that the media reported a connection between Alzheimer’s and aluminium saucepans. Being quite young, I was terrified I was going to catch it, as we had aluminium saucepans! It was probably not long after that that it was reported that white bread caused cancer…
I look back at my Dad in his later years and I know now that he had dementia. Most probably Alzheimer’s (the most common type of dementia). He would ask the same question over and over. He would sit and fiddle and dismantle transistor radios until they wouldn’t work. He could no longer write the newsletter for his Probus Club and he could no longer give an ‘off the cuff’ speech at the drop of a hat (he found this out the hard way when he got up to give a speech and became very muddled). His driving was appalling and he couldn’t pass the test to get his licence renewed. That broke him. They were his legs and they were taken away from him.
I remember being impatient with him for his constant questions. I remember Ma yelling at him for leaving soiled pants in various places in the bedroom as well as other things. I remember helping him clean up after soiling himself as he didn’t want to tell Ma. I only told her after he’d passed away. I showered him in his undies when he was too impatient to wait for the carer to come and shower him. Things that would have appalled him if he was himself. My aunt and uncle wanted Ma to place him into care, Ma refused to do so.
I took him to the ballet as he once took me. He became more affectionate and spoke of how proud he was of me. The last Christmas he had with us he became very upset with the noise and confusion a big family Christmas can bring. Ma promised him that that would be the last Christmas and he was happy. He had bought Ma and I perfume but had addressed both gift tags to Ma. It’s funny that throughout all of these signs, I just remained oblivious in my own little world. He dropped dead suddenly from a heart attack on 5 January. Looking back, I’m glad he went that way. We were spared the agony of losing him twice and of making decisions on his care.
My awareness has only awoken due to Ma’s deteriorating condition. The search for answers to Ma’s behaviours has led me to become more aware. As I’ve learnt more about dementia I’ve wanted to raise awareness. I want more support for sufferers and their carers. I want people to stop turning their back on people who suffer with dementia. And more than anything else, I want a cure for dementia.
People don’t want to talk about dementia. It’s too scary. Fundraising for different cancers achieve more funds than dementia yet dementia numbers will increase as the population ages (the risk of dementia increases over the age of 65). Dementia is the second largest killer of Australians, surely that’s enough reason to find a cure.
I am currently raising funds for Alzheimer’s Australia for the month of April who provide support services, education and information about dementia. If you would like to support me, go to: Memory Walk.
aged carer experience 