I chose to put a happy picture of my son Rob as the heading to this post. It links to a not so happy picture shared by Disability Rights Australia. Click on and it will become obvious why I couldn’t face writing a post whilst reflecting on the story in front of me.

We have a huge dilemma playing out in the world at the moment. People are panicking about being exposed to the Coronavirus, and rightly so. But what hypocrites are the authorities when they state on one hand how they are pulling out all stops to protect people from harm, and on the other hand they ignore a group of people who need their help more than others.

A young boy with Cerebral Palsy was left for a week alone at home, with no one to care for him, after his father was quarantined at another location. The poor father lay there dying himself, probably more from grief at the situation than from the virus itself. He begged for authorities to check on his son. He tried all he could but alas no one listened. Or more to the point. No one cared.

The least the authorities could have done was leave the father quarantined at his home with his son so they could die together, not both alone and afraid.

I read this story and cried for a time, not because I don’t already know these stories are more common than I care to admit. But because I looked at my son this morning, and I knew that I could be in exactly the same position.

We might live in a more affluent society. We might have better services and health care. But do we have any better consideration for others, especially the disabled and elderly in our society. I think not. 

When you read about the thousands of people being restrained, beaten, abused and taken advantage of by those who are paid to care for them, we should all feel sick to our stomachs.

We have protests about Climate change. Protests about minority group rights, animal rights, women’s rights, and on and on. We don’t see protests about disability rights because the family members caring for their disabled loved ones just don’t have the time or energy. 

We rely on the Government to make us safe, provide services, provide funding for our loved ones needs, and provide cheerful words of compassion telling us how they will investigate all the abusive complaints that somehow just got uncovered.

Well the abuse has always been there. The neglect was always there. And the words of we will change laws, regulate the industry, do a better deal for caregivers, have always been there too. And what do we as caregivers do? We continue to hope things improve.

Well the sad facts are that if you care for your loved one the way I care for my son. you have no choice but to be hands on and take positive action. We can all fret over the unfair situations we deal with or we can start expecting the services we use are of a standard we expect. Easier said than done perhaps, or is it?

I spent way too many years waiting for help to come to me. I listened to advice given by those who couldn’t walk in my shoes and never said a word. I failed to complain about carers who didn’t do their job correctly for fear I would have no carer support. And I fretted over the tough times I faced alone.

Then I found myself in the position of needing a carer myself. I was lucky I had people around who could help me and it gave me a serious wake up call. Since then I have had a compulsion to educate other caregivers on the need to take control of everything to do with your caring role.

You have to be the driving force. The one who makes the decisions affecting your life as a caregiver. You have no choice but to search for the service providers who do their job properly, and not settle for less. If we all did that incompetent providers would disappear. You have no choice but to put plans in place should you need care yourself. That isn’t an if, by the way, it is a when. 

There are things you can do to relieve some of the stress, but you have to be the seeker of the strategies that will provide you with support. My son was abused by a carer years ago. He didn’t tell me for a long time because he was afraid he would suffer more for bringing it to light. Now he jokes about his carers being afraid of me. I asked him why when I am always polite. He said they just know when I talk I mean what I say. 

We have two carers who have been with us for several years. We have a good relationship. They know my standards and I know they will carry out their role competently. That is what we all should expect. And if each one of us makes that our goal, we will be helping lift the standards across the board. 

It is easy to think if I don’t read another story like the one I told at the beginning of the post, that perhaps it isn’t happening. Most of our community doesn’t see these stories. They don’t have first hand knowledge about the real fear of wondering what will happen to our loved one if we become incapacitated. Most people go about their lives basically unaware.

It is up to each and every carer to educate others about what we expect. But we have to educate ourselves first and foremost by accepting the fact that we really must be the expert and driving force when it comes to how we do our job as caregiver.