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In 2009 it became apparent that my husband Merv was not coping as well as usual.
Initially, his problems were most apparent at work, where he found himself unable to collate monetary figures – a crucial part of his role as a real estate auctioneer and valuer. On long journeys, he would stare blankly at the map, unable to give directions, which was bewildering when you consider Merv had always been a consummate navigator. During trips to Canberra, he would look in wonder at ‘new’ buildings, even though he had seen them countless times before.
It wasn’t until 2011 that his symptoms were properly investigated. That year, Merv had a procedure that involved anesthetic and, once back on the ward, became very disorientated, unable to comprehend where he was. One of the doctors noticed and recommended a CT scan. The results were not good. We were immediately referred to a gerontologist, who diagnosed dementia. Never having known anyone with the disease, we were in no way prepared for what was to come.
Fortunately, a hospital counsellor referred us to a local carer support group. Joining was the best thing we could have done, I can’t stress that strongly enough. I learned so much about Merv’s illness, and got to mix with other people on the same journey. We would share feelings, thoughts, advice and coping strategies, and it was a huge comfort to know that I wasn’t alone.
After diagnosis, life changed frequently and dramatically, often on a daily basis. Merv gave up work and, with the extra time, revisited his original trade as a restorer of antique furniture. He was able to produce some incredible pieces, even despite the fact he hadn’t been in that line of work for so many years. He seemed to find great calmness, tinkering away in his shed.
As time went on, Merv became increasingly dependent on me. He needed to know I was with him every minute of every day. In some ways this was a blessing, because it was wonderful for us to spend so much time together.
Taking on the role of carer was, however, exhausting. Day and night, Merv constantly had questions. He wanted to know where we were, what time it was or whether we had eaten breakfast. Merv’s love of getting out for a drive became an important part of our coping strategy because, whenever things became difficult at home, we would go out for coffee or lunch to break up the day.
One of the hardest things was the gradual loss of the man I knew and loved. Gone were the great conversations we used to have. Even watching the television together became impossible, because Merv struggled to understand what was going on.
I found that some people who we had previously seen on a regular basis stopped visiting us altogether. They just didn’t know what to say and, even on the occasions when visitors did come, Merv would hide away in the shed until they left, having lost the art of conversation.
Merv passed away on 18 September 2014. Although I am no longer a carer, I still go to my regular carer support group meetings, as a volunteer. It is there that I continue to gain strength and insight into this most horrendous disease of mind and body.