Reuniting With My Big Sister

Ariana is Still Growing

Part 1 - Why I Had To Go

Once in a while a heart warming story about a person who cares for their adult disabled sibling gets printed in a local paper or makes rounds on the internet. These stories tug at heart strings, make you misty, and proud to call yourself part of the human race.  But when I read these stories, instead of feeling inspired I feel guilt, because I'm not one of them. My older sister is mentally retarded, and I haven't been there for her.

Before my youngest brother was born, Dori is the one standing. You wouldn't know by looking at this picture the extent of her problems.

Dori is a few years older than I am, and the 2nd of 5 children. We were born at a time when children with handicaps were frequently institutionalized, but that was not the case with Dori. We grew up together and I loved her, until I was around 6, she was simply my big sister, not retarded, not special needs, just sister. Her developmental milestones were all delayed, but not missed. Her speech was poor, her tongue thick and difficult for her to coordinate. Cognitively and intellectually she never really advanced beyond an early elementary level but she loved to read and always had a Nancy Drew book in her hands She was born before DNA testing, and in fact the condition that it is believed she has was not identified until the late 1950s, just a few years before she was born..

Our family life was relatively normal, Dori had some special needs, but nothing that my mom couldn't handle. Unfortunately that all changed in her teens. Sometime after puberty, she developed an insatiable appetite. My mother found out that Dori was taking food out of the trash at school and eating it. At first she thought that Dori was being bullied, and raised hell at her (very good) special education school. But soon it was apparent that Dori was eating all the time, and as her size grew, so did her stubbornness. For years my mother forced her to take daily walks to help combat the obesity. At 21, she aged out of the public school system, so my mom got her into special programs through the ARC to keep her busy. In this same time period, my parents had divorced, and my mother, who had previously been a full time stay at home mom, became a full time employed mom. As Dori's problems increased, so did the challenge of being her mother.

Dori is in the middle, she would have been around 16. No longer frail, she was beginning the road to obesity here. (Older brother didn't make it for this photo, but younger brother did)

These issues, the insatiable appetite, the retardation, and the progressing psychological issues led to her eventual diagnosis of Prader-Willi syndrome. Once while visiting, I did something that disrupted Dori's routine and she just flipped out. I'd never seen her be so combative and was shocked watching my mom try to calm and reason with her. Dori had also become fearful of walking and going outside. Her behavior was changing and my mom didn't know what to expect next. Clearly Dori needed more supervision, and mom was no longer able to handle her outbursts. A group home provided the solution, but after a few years, her fear of walking, as well as other symptoms increased, and the group home arrangement no longer worked. In addition, my mother was planning on her own big life changes, including moving to Oregon (where I live). I'm sure it was one of the hardest decisions of her life when my mother put her in a nursing home in California, where Dori still resides today.

1996, Dori is standing in the striped shirt.  A few years before going into the nursing home.

Life Keeps Happening

My mother was very severe, but impressively well-functioning alcoholic and her own life had started spinning out of control. She moved to Oregon in the early 2000s, and continued handling care and financial issues for Dori. Mom would go down to visit her periodically, but her own downward trajectory continued. She herself had to be placed in a nursing home when alcoholism finally ravaged her both physically and mentally. And life just continued happening to all of us.  Mom died a few years ago, and those occasional conversations my siblings and I would have about "we really need to see Dori, we need to get involved" took on a little more urgency, but so did the circumstances of all our lives. My husband (at that time) had a stroke, I became a single parent and had to deal with his care. My older brother had his own problems, Hollis, my younger sister, who had been handling all of my mother's financial issues,  moved to Virginia, and Peter became our dad's caretaker.

I hate what finally motivated me to go down and see Dori, but I suppose it is what it is. My father died one year ago, leaving behind a small estate. My younger brother has spent much of the last year sorting and dividing the estate and he made some calls to find out the impact of setting aside a portion for Dori. Our assumptions were confirmed that if she were to receive any money, her State benefits (the state pays for her medical, room, and board) would be jeopardized. And herein lies the push out the door. Discussing the situation with Peter, we decided it was time for us to become legally involved in her care. And he needed her signature on a quit claim deed. I was in the position to take some time off and go down to California to see her, and find out what kind of involvement we can have legally. I had an entire week to devote to this, and last Monday I got in my car and drove 850 miles in 15 hours to go see her.

The woman I met impacted me profoundly.

Next: Reuniting With My Sister

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