A Little Sister, Older Than Me

I am writing today about a topic that is very hard for me to write about -- my 68-year old sister, Gretta. She was 18 years old when I was born in 1959. She was number 3 out of 5 children, when I became number 6. Gretta is the first person I ever knew with special needs. (Please note that I am writing this based on my personal recollection almost 50 years later. The details are a bit difficult to remember.)


Gretta was born with what was then called mental retardation. To just look at her -- at 20, 30, 40 years of age -- you wouldn't know this about her. I thought she was beautiful. She had flawless skin, a beautiful smile, lovely dark brown hair with hints of auburn, a sweet personality, and the most infectious laugh of anyone I've ever known. Intellectually, Gretta never grew beyond the age of 4 or 5 years old. She attended a special education class at elementary school for a brief period but had to withdraw because she had seizures, which the teacher was not able to handle. Gretta did learn to print the alphabet, her name, and other simple words, as well as simple reading. Her speech was very easy to understand compared to some of her friends.


I was told that when I was just a baby, Gretta started trying to hurt me -- by biting and pinching me, and squeezing me too tight. This was when my parents made the tough decision to place her in a state school for the mentally retarded in Mexia, Texas. Gretta loved living there. She made friends with many others girls who were like her. She helped in the nursery with the "babies" (6-7 year-olds in diapers and cribs) who were placed in the school because their families could not care for them. And once, every couple of months, we would make the drive to Mexia and bring her home for a one or two-week visit.



Gretta suffered from hard seizures, which were preceded by her head drawing down and to the left and her left arm and leg drawing inward. My mom believed that Gretta's mood brought on the seizures (which I've since learned was not possible), because she would sometimes be mean or cry a lot prior to a seizure. I remember trying so hard to cheer her up -- thinking that maybe I could keep it from happening. Watching her seizures was very frightening. My mom and I, as well as my older sister, and family and friends -- whoever happened to be there at the time -- would try our best to help her through them. We would rub her back, legs and arms, talk softly and reassuringly to her, and try to make sure she didn't hurt herself.


Years after I had grown up and my father had passed away, my mother decided to move Gretta to a group home nearer to where she lived. Her seizures were under better control with medication and she seemed ready to participate in a more independent environment. The residents helped to cook and care for the house and five days a week they were taken in a bus to various locations for work. (As I recall, Gretta's work involved putting gaskets together and boxing them.) At work, Gretta met Donald. Donald was also mentally retarded but lived at home with his mother. Donald dressed in cowboy shirts and double-knit slacks and spoke with a very slow southern drawl. He was a true southern gentleman and treated Gretta like she was a queen. He would often visit her at the group home, where they would watch TV together and hold hands.




Then, one day Gretta fell down the stairs and ended up in the hospital. She never fully recovered from the fall, and was never able to walk again. It was believed that the fall was caused by a seizure. Gretta moved back home where Mom took over her care with some help from a nurse who would come by a few hours a week. As time went by, Gretta's seizures got worse and worse. She took many different types of medications to control them but inevitably a dose would be missed or be late and the seizure would come. Our mother was getting older and it became too difficult to lift Gretta out of her wheelchair for bedtime, bathing or using the toilet. So, she was moved into a nursing home (which, in the U.S., is usually only for the elderly). She was moved around to various nursing homes until one was found where she would be treated with respect and loving care.


Gretta has a big fan club of nurse's aids at the nursing home where she now lives. She has a reputation for being very sweet and having the nicest manners. She has very strong arms and will help the aids by holding onto the rails on her bed when they come to change her bedding under her. These strong arms also give wonderful hugs. Just the other day, she told one of the aids, "You make me so happy!" 


About 6 years ago, our mother died in another nursing home, leaving my older sister, Patricia, to take over as guardian of Gretta. Patricia visits Gretta almost daily and checks to make sure her care is the best. Patricia and Gretta often sing together. Gretta's favorite song is You Are My Sunshine. Whenever Gretta sees Patricia, she tells her, "I love you Pwisha," and gives her a great big hug.


With every hard seizure now, Gretta ends up back in the hospital on life support. And with every seizure, she loses more of her ability to remember short-term events, like a visit from a friend or family member. But she is still a happy person, with a quick smile and hug, and is loved by all who know her.


Today, Gretta is once again back in the hospital and, we are told by doctors, she may not make it this time. Patricia has signed a Do Not Resuscitate order so that no life support interventions are used -- one of the hardest decisions she has ever had to make. Gretta is unable to move her once strong arms and is extremely lethargic. Even so, she seems at peace.


Yes, writing this was hard for me, but I feel that sharing stories such as this might help others. If only one person is helped by reading this, then it will all be worth it. Please consider sharing your story on this blog -- you won't regret it, and maybe, you'll help someone.


I love you so much Gretta,
Your baby sister,
Karen
specialneedsabudhabi@gmail.com