"I don’t know how long the road is or how many hurdles I have to jump over or even how high they are, but I will always be there with my fantastic memories of our life together..."
Our dementia journey started 11 years ago with a diagnosis of Parkinson’s disease, 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 as Bob worked as an aircraft engineer. Of course, we travelled whenever we could. As Bob’s symptoms, some of which were: slowness, tiredness, hand tremor, rigidity, constipation, loss of taste and smell, were manageable, he stayed at work for another five years. The disease was moving slowly during this time. We joined Parkinson’s Victoria and a Parkinson’s support group. We attended lectures and seminars to try to understand what Parkinson’s was. We found that there were many symptoms. It is classed as a ‘designer disease’. Not everyone has the same symptoms. Not long after retirement, small incidents began occurring.
Bob would forget to lock the car or the doors of the house. In our house everything had its place, not anymore! We are constantly looking for the TV control, his phone or his iPad. I am constantly looking for lost cutlery, sometimes thrown out or placed in some other drawer or cupboard. I once found my oven mitts put away in the electric frypan. A photo of Bob and his new car in 1969 took up residence in our scanner. 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 my frustration increased. That was the beginning of Parkinson’s mild cognition impairment. After a medical assessment in 2018 a diagnosis of Parkinson’s dementia was made. From MCI to dementia. I was so pleased! It sounds crazy, but it was a relief to find out that something was truly wrong. I could now start trying to understand the disease.
I attended workshops and seminars offered by Dementia Australia. We joined the Woodend Lifestyle Carers Group. My carer role was to become clearer. Carers Victoria defines carers as: ‘…people who provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged.’ When did I become a carer? I realise that I became a carer from day one, first with support for the chronic condition of Parkinson’s disease, then the added mental illness of Parkinson’s dementia and now the disability associated with both. I am now a full-time carer of a person with Parkinson’s disease with dementia, i.e. 24/7. Yes 24/7, no straight six to eight hours’ sleep for me. Travelling down the dementia road is extremely frustrating, very 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 he would 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. I am talking in the past tense. That has gone now. He has become selfish, uncaring, lacks empathy and is single minded. Now, I am living through a grieving process. The whole family is grieving the loss of a wonderful man. We have all 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 sanity.
The support I have had from the WLCG has helped enormously. Members are available 24/7. They have guided me so that I can be prepared in advance. In the earlier stages of the dementia, they told me to have Bob assessed by My Aged Care, then, to place his name down for respite care, and, if or when required, permanent care. I have ‘time out’ (respite) from caring for Bob. One day a week he attends ‘Treehouse’ at Kyneton. It is a ‘program that supports people who are living at home with any stage of dementia’. He also meets with his Probus group. I play bridge (online bridge during COVID-19) and attend two carers groups when I can. I sometimes have morning tea with a friend on a Sunday morning. I am learning how to accept help, and, more importantly, to ask for help. For now, I wake up each morning, and say: “no expectations” and “acceptance”. I don’t know how long the road is or how many hurdles I have to jump over or even how high they are, but I will always be there with my fantastic memories of our life together.
The Woodend Lifestyle Carers can be contacted by calling 5420 7132. Although located in Woodend, the group is for the whole of the Macedon Ranges and its neighbours.