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In 2002 my wife Maree began to experience memory lapses. When driving familiar streets, she would get lost. When cooking, she would forget to add ingredients to dishes she had been preparing all her life.
In isolation, these incidents might have seemed small or insignificant. But when I took a step back and saw the bigger picture, I began to worry.
During this time, Maree’s mood also changed. She became flat and, in 2005, was prescribed an anti-depressant. It was a further two years before a diagnosis of Alzheimer’s disease was eventually given. She was just 58.
With a sharp mind for figures, Maree had been working as Head of Finance at a local high school. By 2006 – a year before her diagnosis – she had post-it notes plastered across her desk, reminding her to do certain things. Clearly, she was not coping and, as her condition deteriorated, she began to work part-time. Extended sick leave followed, and she never returned to work.
Immediately after diagnosis, life at home didn’t change too much. We have no family locally, but a close network of friends, most of whom have been a wonderful support. Some friends, however, seemed to disappear. I can only assume they felt uncomfortable. Perhaps they felt they wouldn’t know what to say.
About five years ago, I returned home from work to discover Maree wasn’t there. I panicked, rang friends and even called the police, who were reluctant to help as Maree hadn’t been gone long enough to be considered a missing person.
I rallied a search party and eventually we found her – at 10:30pm, 5kms away from home. This prompted a friend to suggest a community-based day care facility run by Cooma Challenge, where Maree could be supervised during the day as I continued to work part-time.
In March 2012, an Aged Care Assessment Team (ACAT) deemed Maree eligible for low-care support, meaning I received a small amount of assistance in the home. A year later, Maree was reassessed. High care was recommended, and Maree’s eligibility for a nursing home placement was confirmed.
Despite this, I chose instead to accept assistance from the Federal Government, which provided additional in-home support through Cooma Monaro Nursing Service. I cannot express how grateful I was for the existence of such community services, designed to help people with dementia stay at home for as long as possible. Despite my ongoing grief, being able to care for Maree in our own home brought me great joy.
As Maree’s mobility problems increased, myself and her carers began having to use a lifter to transfer her from wheel chair to reclining chair and into bed. That was one of the major factors in my decision three months ago that Maree should move permanently into a residential facility. It was one of the hardest decisions I have ever had to make. But, as a friend pointed out, I need to focus on being the best husband I can be, and leave the caring to the professionals.
The loneliness and grief I’ve experiences since Maree’s move have been challenging, but luckily I live only five minutes from the facility and so can visit for up to three hours each day.
As a male carer, I have had to adapt. Blokes tend to talk about darts or football, but not emotions. I have learned not to hide my feelings. I let myself cry, which a lot of men would never admit to. But crying relieves a lot of emotion, and you feel much better afterwards.
Carers should not to be afraid to ask for help. For me, using the services available – for instance, my carer support group and Alzheimer’s Australia Vic’s free counselling service – have provided a lifeline.