Mom died on a cold January morning in 2015. On that stark winter’s day my life changed forever. I know, I know right now you may be thinking, “that seems a bit cliché, Kelly” or “uhm, a little melodramatic there Kell,” but it’s the catalyst that plunged me headlong to where I am today. Let’s rewind my life’s timeline a little more. Okay, stop there. Yep, right there in 2003. Oh, I should tell you while we are paused for a moment that I have a sister with special needs.
Mom had a very difficult time giving birth to my sister. She would say, “When the nurse handed Nancy to me she looked like she had been in a war zone.” Mom told us that she was never a cuddly or touchy-feely baby, either. When Nancy started first grade she attended the regular classroom, but very soon after my parents got a call from her teacher and she said that there may be something wrong. She believed that Nancy needed to be in Special Ed. When she started special ed in the 60’s there was only one classroom for all the special needs’ kids. In 1983, when Nancy was about 21 years old, she was diagnosed with paranoia schizophrenia. She was in the mental health ward for a few days. The doctor prescribed medicine that started helping her. She began working at the sheltered workshop in 1985. I was only 4 or 5 years old when this happened, but I remember it all vividly.
Okay, let’s get back to 2003. Nancy lost a bunch of weight and physically started feeling very ill. We took her to the doctor for blood tests. Finally, we got the dreaded call. They said that it’s cancer, specifically, they think it is Leukemia. The doctor’s office set up an appointment with an oncologist thinking the worst. Before we could get to this appointment, she got even sicker, and we rushed her to the hospital. They did a bone marrow biopsy, a couple CT scans and many other tests. Shockingly, the results came back that she had Systemic Lupus Erythematosus. This is the worst form of Arthritis. It is a horrible autoimmune disease that makes one’s body believe that their healthy organs are the enemy. The body begins to attack its own organs. It started in Nancy’s spleen and bone marrow, so this is why the doctors thought for sure she had Leukemia.
I was just 25 years old back in 2003. Mom’s health wasn’t very stellar either (Click to read more about caring for an aging parent), so I chose to live with her and help with Nancy’s care. Over the next couple of years, Nancy’s health continued to deteriorate as the doctors tried varied treatments to help her. In December of 2004 her body started to attack her lungs. She was put on oxygen 24/7. Then in March of 2005, she started chemotherapy treatments and slowly, over the years, the treatments worked!
Her list of doctors, that we had to take her to weekly, was super long. To be near and for flexible hours, I was working part time at the public library in our small town. Between Nancy and mom, it felt as if we were always running to someone’s appointment. I guess we were. I got used to taxiing them around and sitting in hospitals and doctors’ offices. I could pack a backpack full of books, snacks, chargers, etc., on a moments notice. It was a perfect time to get caught up on my reading and later, when Pinterest was created, pin like crazy to all my boards.
In 2007, I started an honest diary blog about being a caregiver. Here’s a particularly touching journal entry from way back when, “Have you ever said something you wish you could take back? But you can’t. It’s been said and has tarnished the ears of the listener. I have. I still remember standing in the kitchen. I can almost taste the rage on my lips, but I cannot remember the cause of it. Now, I remember the who, but not the cause. I turned my head towards Nancy and said, “I hate you.”
The thing is, I don’t. I do not hate Nancy. I love her. She is my big sister. She was sixteen years old when I was born. We have so much history together. I shared a room with her until I was eleven years old. Because of her I love Elvis, purple, and the holidays. We are friends. It’s really cool when she has her lucid moments.
She’s not together enough to understand. That’s it right there! She doesn’t understand. Everything is all muddled up in her brain. She cannot convey things with the ease I take for granted.” Looking back today, honestly, I don’t remember the inciting incident that caused me to react in such a negative way.
Here’s the thing, it could be one of many examples. It could have been that time she pooped in the hallway and I didn’t know and went stomping through it barefooted or one of the many of times she had demanded the bathroom just as soon as I decided to go. Perhaps it was because I was fed up with the fact that she is never satisfied and always wants the next thing, “but I just bought you this bright shiny object, dang it, be happy and thankful, already!” Who knows, maybe that day I was annoyed with her for repeating herself every five minutes. So, I’m telling you all about these little quirks, not to complain, but to reveal that she takes a lot of grace and patience and sometimes you run out of both.
Isn’t interesting how the people in your life help shape it? We’ll get back to 2015 and the present very soon. Let’s rewind and reminisce a little bit longer. Back in 2001, I graduated from Oral Roberts University with a degree in Psychology and a minor in art with the intention of becoming an art therapist for children. I became interested in psychology because of Nancy. I wanted to understand all the labels she’d been given: slow, low IQ, mentally retarded, dyslexic, on the spectrum, schizophrenic. After all my classes I concluded, oh, uhm, clears throat awkwardly: Dr. Mickey Mouse here, for what it’s worth, I think that Nancy’s low IQ is stemmed from her dyslexia and autism.
Hmm, I guess, while we are discussing my education, I should add that twelve years after I graduated from college I went back to school and earned a master’s degree in teaching middle school. I student taught 7th grade social studies and substitute taught in a special ed classroom in the same building for a nearly a semester while the regular teacher was out on maternity leave. That summer, before school started for the 2014 year, I was asked if I was interested in becoming a SPED teacher for them. Call me crazy but, I did not think I would be able to handle working with special needs kids all day and then coming home to Nancy and all her special needs. Also, I didn’t have the needed credentials. I was certified to teach History/Social Studies 5th– 12th grade and English 5th – 9th grade, but not SPED.
In those twelve years between 2001 and 2013, my sister, Karen and I owned a photography studio (technically it was her photo studio, but she spoils her baby sister), then I started at the library. Soon thereafter I started working weekly with the teens in the community doing library programs and photography/art clubs. Funnily, it’s like I got to do art therapy with kids after all.
Okay prepare yourself, go ahead and fast forward to 2015, I’m in the sterile hospital room. Loud rhythmic beeping and mechanical whirling surround me. There is hustle and bustle by doctors, nurses, my siblings, and friends all around me. I still believe that mom is going to get better, but then grief slowly wraps itself around me. It begins to squeeze the breath out of me. I realize that I have forgotten to breathe. A couple days later mom goes to be with Jesus.
Honestly, I can’t remember if it was the afternoon of her death or later in the week that my sisters and I had the discussion about what we were going to with Nancy. However, I do remember that I was sitting on the couch when we discussed it. Also, Carrie, Karen, and I had already talked it over with our brother, Bill. I volunteered. They were willing to take her, but this is what I had been training for the last fourteen years of my life, well, training for my whole life, really. I became the primary caregiver for my sister with special needs.
The training helped, but nothing prepared me for the shock of actually being the parent of an 8-year old trapped in an adult’s body. You see, before I was the official guardian, I could just let mom deal with her. Mom was the one to fill her pills and to make sure she took them on time. She was the one scheduling the doctor’s appointments. She was the one who really took the brunt of any of Nancy’s behavioral quirks or bad behavior. She was mom after all. If Nancy had mom near, her bedroom, and her stuff then she was fine.
Grief is a difficult emotion even for fully functioning adults. Nancy doesn’t understand how to process emotion. If you walked into our house at that time, you would have seen it written all over our tear stained faces, but Nancy’s face betrayed her emotions. I know that she felt mom’s death just as deeply as the rest of us. She tried to cry but it was that irritating fake cry that she does sometimes. Her reaction was delayed. She acted out more for attention and; for someone who isn’t very touchy-feely, she was clingy.
We moved my stuff upstairs and into mom’s old room. My sister Karen paid to have mom’s room remodeled so it didn’t feel like I was sleeping in mom’s old room. We made sure Nancy got to stay in this house and in her comforting room. Side note, it got a cute update, too. We got a lawyer, went to court, and I got guardianship of Nancy. She’s on disability, so I worked with Social Security figuring everything out. I was able to get her a state ID. She still thinks that she is hot stuff, “Hey Kelly, I’m like you! Can I look at my ID?”
It took time for us to adjust. I’m the youngest sibling. It took some creative thinking to get her to mind. I’m sure she was thinking, “You’re the baby, I don’t have to do what you say! You’re not the boss of me.” Karen and I would tell her, “Kelly’s (I’m) the boss, the judge said so.” This still works if she really starts acting up. Also, all the siblings helped reinforce that she needs to do what I say. I created a behavior chart that she moves up and down on throughout the day. At the end of the day she gets the appropriate amount of tickets based on where she is on the chart. On Friday she gets to “buy” stuff out of the basket with her tickets. This has been a life saver! She loves it and wants me to ‘splain the game to everyone we meet. (“Kelly, you ‘splain it.”)
Karen lives near and has been here almost on a daily basis. Our oldest sister, Carrie, comes up from Guadalajara once or twice a year so we can have a break. Honestly, these last few years have been tough. I’ve learned so much about being a caregiver to my sister with special needs. It has taken lots of love and grace as we’ve all tried to figure this out. Karen and I have not only grieved for our mom but for the loss of our old lives and the three of us have grown and changed so much. Nancy’s health has improved, and we don’t have to go to so many doctor’s appointments anymore. And now here we are looking back at the last four years; throughout that time, I feel like my life has been paused and I’m ready to press play on life. Are you ready? Come on. Let’s go!
