Confessions of a 'super sister'

By Helen Ries

For many of us, the sibling relationship is the longest and deepest relationship we experience in a lifetime.

This is certainly true for my brother and me. When he was born in 1972 he didn’t come home from the hospital right away. The doctors told my mother they needed to run some tests.

I can still remember my deep disappointment that the promise of a baby brother was taking so long to materialize. When he did finally come home, there was nothing better than dragging this baby around, dressing him up and pretending to feed him.

As we got older, he was my constant shadow. I made sure he was included as we played games with the other kids on our street. He was always there and under my constantly protective eye. I went away to university and then spent many years living in other cities trying to make my way in the world. Our bond faded, but didn’t weaken.

Recently we’ve become very close again.

Sadly, our parents both passed away unexpectedly within a short period of time. My brother came to live with me and my husband, and we became his primary caregivers. I had always known this day would come, but it was never really discussed as it was a painful and seemingly fictitious conversation that I wanted to avoid.

The change was shocking and difficult for all of us. Unlike me, my husband didn’t have a lifetime to anticipate becoming the primary caregiver of a person with Down syndrome.

Sibling caregiving is complex and very different from the parent-child relationship. My brother is his own decision maker. I am responsible but without authority.

As siblings, you are close because of circumstance, not necessarily choice. You are honouring family values and unspoken parental wishes but you also have your own to consider. You walk the grey line of ethical decision making every day and in everything that you do.

I wonder continually: “Is this decision about him, or about me?” 

These conditions are ripe for the emergence of the ‘super sister.' I am a super sister. I am not the only one. There are lots of us out there. Super brothers, too. As a super sister I have taken on this caregiving role with my whole heart and then some. It comes from a place of deep love.

I have shifted a lot of energy that was focused on my own life to my brother’s life. I organize, plan, arrange, boss and frankly dictate so much of my brother’s life. I feel I have to do it this way because I am new to this job and I don’t know how else to do it. If I throw everything I have into it, everything will be all right, right?

I have been a super sister for one-and-a-half years now and I’m thinking that it’s time to retire my cape. Or at the very least find a spot for it in my closet.

Over the last year I’ve learned that even the mightiest of us super sisters can’t make pain go away, do everything right or be wholly responsible for creating a good life for my brother.

When you love someone deeply and for a lifetime you want them to be happy. I think this is especially true when that person has a disability.

I know that the pain my brother has dealt with in a lifetime has superseded my own. I have not faced discrimination and prejudice daily. I have been able to make my own choices, accumulate assets, enjoy good health, have many friends and do so many other things I take for granted. My brother has watched all of this and wondered why life has been different for him. When our parents died, super sister was all over his pain, trying to scrub it off his life because that is what seemed fair.

I could articulate my pain, rationalize my grief, and express my feelings in a way that brought me relief. But my brother could not.

So instead, I provided an endless roster of tonics: from tubs of ice cream to a new cat, from singing childhood songs to taking him on an exotic trip. On a daily basis he got a speech about what our mother and father would have wanted for him, how he shouldn’t be sad, how he has so many good things in his life. One day he told me: “Leave me alone.” The shine fell off my super sister costume that day. After that, I tried to take a back seat.

One day recently someone was rude to my brother on the city bus. Actually it was beyond rude, it was harassment. I overheard it, because we were on the phone together at the time.

I cried and was lost in despair about it. How can people say those things? Don’t they know what he’s been through?

My brother yelled back at the offending passenger: “You are not very nice and you should watch your mouth.”

Later on, when the drama had subsided, I realized that being super sister had been all about me. He doesn’t need super sister. He just needs me. And only sometimes. This letting go is something I’m trying to figure out, and I don’t think I’ve quite got it yet.

It’s hard to accept as a super sister that you can’t erase pain. It’s hard to accept that you have to back off and let people be, let them travel their own path, and allow them to get there in their own time.

Even the deepest and longest relationship in a lifetime has its limits.

Helen Ries is a writer, community activist, and professional consultant, and is also in the role of primary caregiver of her brother, a person with an intellectual disability. Helen’s work aims to build caring communities, better programs and smarter social policies for a more inclusive society. You can connect with Helen on Twitter @helenries  or through her website greatriverconsulting.ca. Or visit The Sibling Network, a Facebook group Helen created to provide information and support to caregiving brothers and sisters.