True Story: I’m The Caretaker For My Disabled Sister

What would life be like if you were the primary caregiver for your sibling who had disabilities? How would you juggle those responsibilities along with your career and other relationships? Today, Sebene shares her story.

Tell us a bit about yourself.

My name is Sebene Selassie.  I was born in Ethiopia in 1970 and raised in Washington D.C. from the age of three. I have also lived in Montreal, San Francisco and Guinea but have made my home in Brooklyn, NY for over twenty years.

For many years, I worked with children, youth and families in various not for profit organizations. I am a full-time meditation teacher and transformational coach.

Tell us a bit about your sister.

My older sister, Finot, was born with brain damage that resulted in intellectual and developmental disabilities. She has limited intellectual capacities — she can’t read or write beyond her own name and she doesn’t speak in complete sentences.

In fact, we came to the United States in search of educational opportunities for her, and my parents chose D.C. because of a special school they found there. A year after we arrived, a revolution happened back in Ethiopia that led to many deaths, including of many friends of my parents. Sometimes I wonder if we had not left, what might have happened to my dad or to us. Maybe Finot saved us…

Finot is a very positive, social and loving person. She’s really easy to be around and she loves meeting new people and having new experiences. She loooooves watching action movies, riding her bike, going to the beach and generally hanging out with people.

She is really good at word finds and puzzles. She does not have advanced intellectual capabilities but she is still a 50 year old woman, so she’s this interesting mix of childlike presence and elder wisdom.

Growing up, what was your relationship  with your sister like?

Growing up, I was the youngest of three. We have an older brother who is eight years older than me and he was having his own adolescent life while Finot and I were navigating living in an all white, upper middle class neighborhood (neither of which we were being black and not wealthy).

We shared a room and spent a lot of time together so I found myself being Finot’s main link to the outside world after school, on the weekends, or during the summer. We would ride bikes and play with the other kids and I made sure she got included in games and protected her from teasing.

It wasn’t unknown for our neighborhood “friends” to use the n–word or to call her a retard. I naturally took on the responsibility to care for her and I really did not give it much thought.

We moved when I entered junior high, and I’m sad to say that as I got older my adolescent insecurities made me self conscious about having a sister that was so different. I began to distance myself from her as I gained more autonomy and could go out on my own or with friends. I was never mean to her (I hope) but I spent less time with her and eventually went to college and moved out.

Prior to living with you, where did your sister live?

My sister and mom started spending most of the year in Ethiopia about 20 years ago when my mom retired and they moved back to Addis Ababa  full–time 10 years ago (our parents are divorced).

I saw Finot and my mom every year when they would visit the U.S. for a few months at a time. And I tried to visit Ethiopia every few years. This meant I would spend intense amounts of time with them — usually weeks at a time. We also all three lived together for a year in D.C. in 2004.

Our mother passed away unexpectedly last November and after staying with me for a couple of months, Finot went to live with my dad and his wife in North Carolina for two months. That did not work out and Finot has been living with me and my husband, Frederic, since March.

When/how did you make the decision to take over your sister’s care?

I’ve always known that Finot would eventually become my responsibility and I tried to talk to my mom about preparing for that, but my mom was always trying to delay the conversations. I’m sure she had a lot of fear about that reality.

Your sister has been living with you now for six months. What has this transition been like?

When my dad offered to take care of her, I thought Frederic and I had time to plan for the future of this inevitability but that wasn’t the case.

We’ve had support from some of my mom’s best friends and from some of our friends in Brooklyn who have been super amazing about proactively volunteering themselves to be with Finot so we can go on a date or just get a break.

Sometimes we have hired a sitter for an evening or a day if we are both working or one of us is away.

How do you work caretaking into your life and schedule? 

Luckily, I can mostly work from home and Frederic is also a freelancer (he’s a cinematographer) so we both have flexibility in our work lives. And at the same time, sometimes I think if we had jobby–jobs we could simply find a day program for Finot and have her on a more “normal” schedule where we are all out of the apartment during the day and home in the evenings.

As it is, I often teach at night and my teaching schedule is all over the place, literally. I was gone for one month straight earlier this summer teaching retreats in Massachusetts, California and New Mexico and Finot had to go stay with my mom’s best friend who lives in the Bronx.

I’m scheduled to teach retreats this fall and will again need to find alternate care for her. I also do long silent retreats every year as part of my own ongoing practice; I was scheduled to do a month long silent retreat this October and now will probably need to cancel that.

Have you ever tried or considered a different solution, something other than her living with you full-time?

The last time I saw my mom, last summer, we had a long talk about Finot and once again I talked to her about things we had been discussing for decades.

I’ve always wanted Finot to have a more engaged and meaningful life. She is very loved by family and friends but since she left school and the  job program she was in for a short while after she graduated, she has not had a community of peers or fulfilling work. She has been treated more as a child needing care and educating.

My mom never really had her do very much in terms of adult responsibilities. Since she has been with us she has been vacuuming, doing the dishes, and riding a bike again (after 35 years).

Soon all three of us will begin volunteering at a community upstate for adults like her and we hope that she will eventually live there full–time with visits home to us regularly. When we first told her about this idea, she was very upset about it but I asked her to trust me which she agreed to do.

We went to visit this place together and after her tour, she was super excited about the possibility of having a job, friends like her and living in a beautiful place where everything is structured to that she has the safety to move about on her own and engage with whomever she wants. She has never had that level of autonomy in her life and I want her to have that freedom.

What has this taught you?

At first I had the idea to send Finot to Ethiopia for the fall so I could stick to “my” schedule and then I realized that I was treating her like she was a problem I needed to solve. Caring for Finot is helping me rethink any ideas I had about my life looking or being a certain way. It’s also making me think a lot about what it means to “practice” — I am on retreat right now, this retreat is called “life.”

Thank you so much for sharing your and Finot’s story, Sebene! Do you guys have any questions for her?

P.S. True Story: I’m 26 and I’m raising my two teenage brothers