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Unspoken Realities

All my life I have known that one day, I would be responsible for my brother’s care. My younger brother is a person with a developmental disability

When that day arrived, it was early, unexpected and fast. The shock of suddenly becoming a caregiver still runs through me. There are moments when I remember a time that I could go away for the weekend without planning it or when I didn’t have the nag of constant worry. These incredible freedoms are lost to me now.

This time three years ago my life dissolved into chaos. All the neatly laid out puzzle pieces of my life had been thrown all over the place. I have slowly and tediously retrieved some of those pieces and a few are back in place. I often think about my experience and how there was no one able to empathize and advise through my journey. This is a piece of the puzzle that was always missing and has never been found.

Every sibling who will ultimately care for their brother or sister with a developmental disability will have their own journey. I want to share some unspoken realities from my experience.

1. You will need a lot of money.

Our public social support system does not differentiate between parental and sibling care-giving. They don’t understand that you can not just step into your parents’ shoes once they are gone. I think historically our public social support system has relied heavily on at least one parent totally committing their lives to their child with a developmental disability. It is not understood that as sibling, this is not part of how your world has been constructed. You already have a life, a career and a family that will disolve without the right support.

Because our social support system has a scatter gun approach to funding (especially Ontario’s Passport Funding), your sibling might have more than enough support or more likely they have very little, if any. As a consequence, you need to pay out of pocket for the support you and your sibling need. And you can not, not have that support. You need it to remain stable and just get through the week.

You will need these funds immediately from the day your parents die and you need them to flow on an ongoing basis. That amounts to a lot of money.

2. You will lose all your privacy

After our parents died, I lost all my privacy. I had to repeat our deeply personal and private story to everyone I met, social workers, doctors, case workers, support workers, colleagues, friends and more. You have to tell them everything to get the right services, solutions or understanding for what you are facing.

Along with this lack of privacy comes a constant feeling of being judged. As you peel away explanations and descriptions of how you live, you are met with judgement, expressed or not. I will never forget or forgive a case manager who, in a time of great crisis, giggled as I described our distress. The story of our crisis exposed to an authority was judged as irrelevant with a giggle.

After three years of hard advocacy and difficult circumstances, we do have some great support and now my privacy is lost in a different way. Our house is like Terminal 3 at Pearson Airport, a revolving door of people. We have truly wonderful people supporting my brother,  I am sure they don’t care if my hair is a mess, if there are dishes piled everywhere or if I am upset and I can’t hide it, but I care. Even at home, there is nowhere for me to hide if I need to.

3. You will become a systems expert  

Although it is not always the case, when our parents check out, we and our siblings are going to be older. 

Being older means health challenges for many of our siblings with developmental disabilities. The research shows, health challenges for people with developmental disabilities are more frequent, chronic and complex. The health challenges are not likely to be only physical, but mental too. A trigger like the trauma of losing a parent can lead to many years of mental health challenges.

The health care system is different than the developmental system. So you will have to learn how to navigate that system as well. The good news is once you have been through the developmental system fighting for support and recognition, the health care system will seem easier. In my experience the knowledge, capacity and compassion inside the healthcare system supersedes by light years what is available in the developmental system.

These few realities are difficult and the intention of airing them is to bring them forward and build understanding around the sibling journey. There are many other realities, still unknown, still hidden.

The sibling journey is in the shadows but the inclusion movement has been built on our backs. From the day our brothers and sisters show up in our lives we fight for them, we love them, we suffer their injustices and the pain they experience is carried as our own throughout our whole lives. We are unrecognized for picking up all the pieces of a failed system.

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If you are a sibling of a person with a developmental disability join our Facebook Group https://www.facebook.com/groups/siblingnetwork

For great information about developmental disability and health (both physical and mental) visit H-CARDD