Carers WA Ambassador for National Carers Week 2021, Despene Sattler shares her story of caring for her late husband, Howard.
My Life As A Carer … written by Despene Sattler.
“My role as a carer for my husband began long before I realised that I was even a carer.
He had been initially diagnosed with Parkinson’s Disease and in those early years he was still mobile, independent and from my perspective, only showing limited symptoms. What I didn’t notice was the slow and sometimes unnoticed limitations on my spare time or time away from the house. He was a falls risk who stubbornly ignored the safety measures his occupational therapist had put in place. I was beginning to curtail social activities because he would be home alone so I organised my outings to coincide with visits from family and friends.
What I didn’t realise at the time was that I was just one of 2.65 million people across Australia who were by definition looking after a partner, parent, child or friend and were indeed carers.
My husband’s condition and symptoms were confusing and didn’t follow the normal progression of the disease and eventually our neurologist confirmed we were dealing with something far worse than Parkinson’s Disease. Now known as PSP, progressive supranuclear palsy is a very rare neurological disorder that cannot be treated or harnessed. It was essentially, a death sentence that would not be merciful. The disease robbed him of his mobility, his speech and in the end stages, his sight.
I must confess, I had limited knowledge of the world of caring. I didn’t know what or how important an ACAT assessment would be to the journey I was now on. I was told to contact Carers WA and the Carer Gateway.
I am so glad I contacted Carers WA. Their help and advice would become invaluable on my 10- year role as my husband’s primary caregiver.
There was advice via a helpline, I was allocated a support planner who regularly checked and charted my coping levels as they fluctuated from managing to being so overwhelmed that I could barely eat or sleep.
Their help pointed me in directions I would never have thought to source, such as the availability of respite, care providers and to put simply, an understanding and constructive source of the available help I was entitled to access.
I had, in fact, been a carer before. First in 2000 when my mother was diagnosed with stage 4 Melanoma cancer and then again, some years later when my father was battling colon cancer. My sister and I had cared for them both but we didn’t call ourselves carers or seek outside help. Looking back, I wish we had.
By the time, I was caring for my third patient, my energy levels were depleted and I was on duty 24 hours a day. But I wouldn’t have changed a thing.
It was a privilege to care for the man I loved and to know that I had done everything possible to spend quality time with him.
The last two years drained me because my husband required my full attention, constantly testing the boundaries of his physical condition. His behaviour was a symptom of the disease making caring a very challenging and sometimes impossible job. I was dealing with a grown man who would not follow simple instructions to stay seated while I fetched his dinner, medication or to answer the phone. The end result being another fall, or another broken bone. The pressure was relentless however we managed at home until he required the care of a hospice and he eventually passed away long after his initial prognosis.
I truly believe that the help of Carers WA enabled me to keep my husband at home without needing to place him in an aged care facility and I now find myself advising people in the early stages of their illness how vital it is to link to their services.”
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