Gabrielle Fakhri has been caring for her son Simon, for 42 years. She gave this touching account of life as Simon’s carer at the launch of the Carers count special project during World Continence Week.
I care for my son Simon, who is 42 years old. Simon has autism, and 10 years ago he was diagnosed with bipolar disorder.
The bipolar disorder has been the hardest of all his conditions to deal with. Simon doesn’t speak, so is unable to communicate his feelings, making it difficult for me to work out how to adjust his medication to manage his moods.
Simon has 20 days of depression, where he wants to sleep all the time, followed by 20 days of manic behaviour, where he refuses to go to bed, probably getting only three to four hours sleep a night.
“One of my sisters-in-law kept her son away from Simon for many years, thinking his disability might be contagious.”
When Simon was born he was one of the first children in our Lebanese community in Melbourne to have a disability. It was a shock to everyone at the time. In fact, one of my sisters-in-law kept her son away from Simon for many years, thinking his disability might be contagious.
There were a lot of superstitions around disability at that time, but we have moved on now.
We love Simon dearly; he is cared for and loved by his extended family and friends. However, for me, his main carer, it is sometimes a day-to-day struggle.
I had been trying to toilet train Simon since he was three. He was toilet trained at the age of 12. Since his bipolar diagnosis, Simon has reverted to being incontinent at night, and is having accidents during the day. I am resisting putting him in pads during the day because, being autistic, once I do this he will not want to use the toilet again.
I have been very lucky because, until Simon’s bipolar diagnosis, I was able to work full-time as a community development worker with migrants, refugees and asylum seekers. Simon attends day centres and I have also been blessed with a mother who has been able to care for him when I couldn’t - during school holidays, program-free days, Christmas holidays and, of course, on the many occasions when Simon was sick or in hospital and I had exhausted all my sick and holiday leave.
However, my mother is 85 and becoming frail, so I am also caring for her now, with much pleasure, because I can never make up all the help she has given me over the past 42 years.
Being a carer means you can’t just head off with a girlfriend for coffee. Any outing requires careful planning and organising. An in-house carer needs to be booked, and of course you want the same carers who are familiar with Simon and understand his behaviour.
Preparing for an overseas holiday is stressful, and requires major planning, arguing and begging for respite while you’re away. By the time you organise yourself and your son (with medication, clothing, continence products, emergency supplies, money for his day placement, taxis and the respite centre) you are so exhausted that when you head off, you immediately become sick with bronchitis. This has happened to me on each of the five holidays I have ever taken.
“He also likes going for long drives and playing very loud music. I suspect that is the reason I have lost many neighbours over the years.”
Simon, of course, gets bored at home and, despite the many things we have bought to try to interest him in, he is only interested in photos. He has more than 300 photo albums filled with photos I have taken, because I know they give him so much pleasure.
He also likes going for long drives and playing very loud music. I suspect that is the reason I have lost many neighbours over the years. And, of course, being non-verbal means he tends to yell and scream quite a bit.
It is difficult taking Simon on an outing if he is in one of his screaming moods. If I am feeling tired and vulnerable and people start staring, I find it hard to cope and often just return home, usually without doing the shopping.
Simon understands a lot of things; I recently had a knee replacement and when his father brought him to visit me in hospital, he just looked at me without yelling or screaming. When I came home he was on his best behaviour and seemed to know I was unable to care for him, but needed to be cared for myself.
There are so many positives to being Simon’s mother. When he was younger, I was worried I wasn’t spending enough time with his two younger brothers, concerned they might be feeling neglected and resentful. I sent them to a Noah’s Ark siblings group, where siblings of disabled children are counselled and helped to understand their disabled brother or sister.
When I received my sons’ assessment, the coordinator congratulated me for having two such well-adjusted boys who loved their brother and had absolutely no issues with him. To this day they offer to care for him and take him to their homes.
As a result of having Simon, I have developed qualities I might never otherwise have; patience, compassion for others, understanding and the strength to advocate for his needs.
I must admit though, that it is difficult to advocate for my own needs. When it comes to me and Simon, I feel too emotionally involved, and often need help to express my own needs to service providers.
Like all ageing parents, my husband and I face the dilemma of not knowing where Simon will live when we can no longer care for him. He has been on a waiting list for permanent supported accommodation since he was 16 years old, so it is obviously a long waiting list.
My fears for the future are echoed by so many ageing parents, and while many of us are hoping the NDIS will be the answer, we are not entirely confident that it will be.
In the meantime, we do our best, hoping and praying we don’t get sick, and that we continue to get great pleasure from having Simon in our life.
You can watch Gabrielle’s speech at the World Continence Week breakfast launch, June 2015.
To get help for bladder, bowel and pelvic floor health problems, call the free National Continence Helpline on 1800 33 00 66 or talk to a doctor or continence specialist.
For further information visit continence.org.au.