Friday, June 10, 2016

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.caOr visit The Sibling Network, a Facebook group Helen created to provide information and support to caregiving brothers and sisters.


Thank you for paddling your canoe through this Great River, Helen.

Our boats meet in the day and the night.

And we all need to know when we "are not very nice" and "should watch our mouths".

I hope that person takes responsibility for their good life and those around them.

Your brother's impact would be honoured that much.

Beautifully and carefully written. What a complicated journey for everyone in your family. I'm going to share this with my daughter. I want her to begin thinking what kind of a relationship she would like with her brother and he would like with her before Jim and I die. Of course, dreaming is one thing and reality is another. Thank you for lighting the path.

I am happy for you and Paul and relieved to read this. It is something people here at LiveWorkPlay who care about all of you have been worrying about, and it's not something that is easy to communicate.

You are not alone in this type of journey, even though every journey is unique. But so much energy can go into trying to be everything that someone needs instead of being what they need from you - the you that is not trying to be everything.

It is also confusing because the superdad or supersister identity can not only result in a loss of perspective but also gets reinforced in many ways.

It happens to paid support people too. They can come to believe that they are the one and only person who truly cares enough to do the job right. Whether it is a family member or a paid support who is trying to be everything, the result is similar - the person they care about is not getting what they need most from you and their world is smaller because one person is taking on the roles that many persons should be filling.

This is wonderful writing even with the editing :-)

Hi Donna -- I would love to hear if you do share it with your daughter. To be honest, I would be afraid to share with mine. It is something we have never discussed directly. Her life, at almost 20, is completely her own, and she is happy. We almost never see her because she is so busy.

I remember when I first began work at Holland Bloorview in 1999, that when we had workshops about siblings, the idea was that parents would tell siblings that they would not be responsible for their brother or sister in future, because through creating a support network, it wouldn't be necessary. The idea was that you could plan enough that the sibling participation was a complete "choice."

Over the years, I've come to see that especially for youth/young adults with significant, multiple disabilities, that "the many people" who "should be filling roles" as Keenan advises above, do not materialize. It is hard to get people who are invested at the family level involved, let alone people who have no family connection. So at the back of their minds, parents like me feel like we're caught between a rock and a hard place.

For so many years, whenever we couldn't "afford" some kind of intervention or therapy or camp costing thousands of dollars per week (every summer) plus a private worker, or SNA at a time when the school board allowed parents to pay for one themselves (we did for an entire school year), or whatever, I borrowed against our mortgage. It's finally hit me that I have to pay the mortgage off -- no more "we have to do this. We will do this, no matter what the cost."

We are starting a planning process. But to be honest, I am cynical. I hate the place I've landed in terms of how I feel about the future. I hate feeling like I don't have choices and I don't want to pass along a lack of choices to my other children. Most of all, no one really wants to talk about it. It's like a taboo topic. I don't think the average person wants to hear about your life if your child isn't launching themselves independently into the world.

When I read Helen's piece it resonates so much with me as a parent -- how you want to do everything in your power to make the life of your loved one better. It seems that there are some siblings, like Helen, who can make that incredible commitment and step up to the plate when parents die. But I fear that there are others siblings who for many different reasons can't take on that responsibility.

I hope other parents and siblings and youth and adults with disabilities will chime in here with their experiences.