"There does come a time when only professionals are capable of looking after dementia sufferers..."
NEIL'S STORY is one of the Founding members of WLCG. He continues to work hard in the group, supporting newcomers, raising funds and receiving the much-needed support and love required to go on. Neil and his wife Mary moved from Essendon to Newham in the mid-1970s in order to bring up their two daughters in a country setting. Neil was a panel beater/ mechanic and Mary was a primary school teacher's aide. They both worked at fitting in, Neil joined the local CFA, and they became very active members of the community. Life was good. Around 2006, Neil and his daughters Wendy and Michelle could see something was not quite right with Mary. No one could quite put their fingers on it but Mary was not the same. Her school suggested she have her long service leave as time off. The break did not help. Mary continued forgetting vital things, having fainting episodes, pacing their home, wandering off and just being generally distracted.
Mary was only in her late 50s, so dementia never entered anyone's mind. It took two full years of trapsing from specialist to specialist before Mary was diagnosed with frontal temporal dementia. Neil was forced to give up work. Mary required constant care. Together they embarked on a confusing and frustrating journey to navigate a disjointed and under resourced health and aged-care system. Dementia care falls between many cracks. It is not considered to be a mental health issue, nor is it an acute illness. When Mary stopped sleeping, got up every night and wandered the house switching on lights or managed to negotiate the door locks and wander off, Neil did not know where he could turn for help. It was virtually impossible to find time to look for help as watching Mary took all of his time and left him sleep deprived. Unfortunately, a lot of this kind of carer, who is on duty 24 hours per day, is bleak. Professionals continuously tell you to "take care of yourself" but no one has the recipe for how you can do this. Life as it was disappearing, you have to stop working, social events become difficult, more and more a carer is isolated and under such constant strain that their physical and mental health is compromised. None of this could Neil realise.
There was no time for contemplation when he was up all night and running after Mary all day. Like most carers, Neil had no idea how drastic the situation was and how lost he was. Like most Carers, someone from outside, family or GP has to bring pressure to bear to make you realise you cannot keep doing this. There does come a time when only professionals are capable of looking after dementia sufferers. Mary became a full-time resident at RM Begg in Kyneton Victoria. She soon lost the ability to speak and although she stares hard into Neil's face, it is not clear if she knows who he is. Neil continues caring for Mary, he still goes every day to feed Mary. She has been in the home for six years now. Her dementia continues to advance. Dementia is a terminal illness; you will never get better. Neil is with Mary on this journey. It is an incredibly long and intense journey. Although Mary is cared for, Neil continues to experience every change in her condition. His stress never really abates. Neil is a carer. Who cares for the carers?
The Woodend Lifestyle Carers Group can be contacted by calling 5420 7132. Although located in Woodend, the group is for the whole of the Macedon Ranges and its neighbours