In her own words: Caring for Susie

Helen Wemyss has shared the story of caring for her daughter Susie with the Advertiser. Here, she writes in her own words of her struggle to improve accommodation options for people living with disabilities.

This is my story, and it is also the story of many other carers.

I am telling it not to complain or for pity, but to make others aware of the realities and the desperate need that we as ageing parents, carers and families have to see our adult children who have an intellectual disability living in a safe, secure and appropriate place before we die or are no longer able to care for them, and while we are still able to oversee their transition from the family home to their new home, so as to make that change the least traumatic for them as we possibly can. 

We love our children unconditionally, but the reality is that there are times when we feel physically  and emotionally drained, unable to cope any more.  

The care that many of them require is constant, twenty four hours per day. We have a child for life. 

They can have more than one disability, can be verbally and physically aggressive (even the sweet, quiet ones) with associated behavioural issues and can require hands on assistance with toileting, hygiene, grooming and dressing.  

We are their organiser, their taxi, their companion and always their teacher.

For all that they require from us they can still be a joy and can still melt your heart. 

They have the same emotions as the rest of us and will go through the same emotional turmoil as  we all do when someone we loved dearly and has cared about us dies. So imagine those emotions and then being moved from the security of your home to a new home not of your choosing, with people you may or may not know, or even with people you may not be compatible with, with staff who may not know your needs or even to another town, away from everything that is familiar to you. 

As a mother my heart breaks at the thought of having any of this happen to my daughter, as it does for most parents, which is why a small group of elderly parents decided to do something about the situation ourselves and got together to form ‘Quality Living Options Bendigo’ with the aim of providing a safe, secure and appropriate place to call home for our adult children. 

We are dedicated to achieving this for our children. Unfortunately for some parents it will probably come too late. Hopefully with support from the public we can and will achieve our goal.