The support I have had from my daughter, grandson, and the rest of the family has been amazing and essential for my wellbeing. I am learning how to accept help, and, more importantly, to ask for help. For now, I wake up each morning, and repeat to myself, “No expectations…acceptance”.
Our dementia journey started 11 years ago with a diagnosis of young onset Parkinson’s disease.
When we received this diagnosis, my husband Bob and I had been married for almost 40 years. We had been living an enviable life with Bob working as an aircraft engineer. We travelled whenever we could.
Bob’s symptoms included slowness, tiredness, hand tremors, rigidity, constipation, and loss of taste and smell. The symptoms were manageable and he stayed at work for another five years. The disease moved slowly during this time.
We joined Parkinson’s Victoria, a Parkinson’s support group, and attended lectures and seminars to try to understand more. We found out it is classed as a ‘designer disease’ and not everyone has the same symptoms.
Not long after retirement, small incidents started occurring. Bob would forget to lock the car or doors of the house. In the past, everything in our house had its place, but not anymore. We are constantly looking for the TV remote, his phone or iPad. I once found my oven mitts put away in the electric frypan.
I would become extremely frustrated, often angry, with Bob over continuous incidents like this. He would make statements that weren’t true. I would become angry and frustrated and try to logically prove he was incorrect. Nothing worked and so my frustration increased. That was the beginning of Parkinson’s mild cognition impairment (MCI).
After a medical assessment in 2018 a diagnosis of Parkinson’s dementia was made. His diagnosis went from MCI to dementia - I was so pleased! It was a relief to find that something was truly wrong.
I could now start trying to understand the disease. I attended workshops and seminars offered by Dementia Australia and we joined a local carers’ group.
I am now a full time carer. This is a 24/7 role - no straight six to eight hours of sleep for me!
Travelling down the dementia road is extremely frustrating, painful and sad. It is a slow process and with each step and hurdle I am losing the man I loved. He was the most caring and devoted husband who treated me like a princess. I would find love notes under my pillow, he would open the car door for me and buy me gifts. He hugged me when I cried and helped me deal with my problems. He was my rock. His love was unconditional. He was a wonderful husband and caring father. That has gone now. He has become selfish, uncaring, lacks empathy and is single-minded.
Now, I am grieving. The whole family is grieving the loss of a wonderful man. Together we have watched the change in his personality over time.
The support I have had from my daughter, grandson, and the rest of the family has been amazing and essential for my wellbeing. I’ve also had wonderful support from my carer support groups. Members have guided and prepared me in advance to navigate the aged care system.
I am learning how to accept help, and, more importantly, to ask for help. For now, I wake up each morning, and repeat to myself, “No expectations…acceptance”.
I don’t know how long this road is or how many hurdles I will have to jump or even how high they are, but I will always be there with my fantastic memories of our life together.