Jamie Sohtz is a writer, student, photographer, and homemaker. She currently lives in Tennessee with her family and pets. You can contact Jamie and learn about her experiences at: firstname.lastname@example.org.
Being a young caregiver is not an easy task. Nothing can really prepare you for the news that a loved one has Parkinson’s. And you might just have a short amount of time to decide if you are going to help or not. And sometimes there are those who you expect to help, but don’t. In most cases, you just help. With Parkinson’s, your body is taken control of, and there are additional elements in your life that you lose control of. One thing as a caregiver is to know that you alone, are in control of making your loved one with Parkinson’s as comfortable as possible.
He had little patience, and it got worse as his disease progressed. HIS disease. He owned it, it was all his, it robbed him, it became him.
Dad told me he had Parkinson’s when I was 16 and showed me how his hand had a slight tremor. I really didn’t know or understood what Parkinson’s was. I just knew from helping my mom in nursing homes, that Parkinson’s didn’t end well. I feared the end result. And for years after, I feared losing him. At the time of the news, I was so focused on my own little dramas, school, and boyfriends. What I didn’t realize was that Dad would be ready for my help right after the birth of my first daughter, 5 years later. I shopped for him. Sometimes he would want to come in and shop, holding his arm so he wouldn’t fall. As time progressed, he would try the electronic shopping cart, and sometimes I’d push him in his wheelchair, stacking grocery items in the basket. Sometimes he would wait in the car, instead of me helping him get in and out of the car, while balancing a car seat for the baby. He grew more impatient as he saw me juggle the baby and him.
I noticed his hands shaking even more. At one point, he was taking 20 pills a day. His walking slowed, and by the time my daughter was of speaking age, Dad would freeze when walking. He would get to a gate, or a puddle, and psychologically could not get past it. I remember my daughter saying, “Look Mommy, Papa’s feet are stuck”. His frozen moments turned into him falling. A 6 foot 2, 215 lb man falling like a tree, making sure I caught him. Catching him got harder to do through the years. More big decisions had to be made, and with it, more of his dignity robbed. His reaction time had drastically slowed, which meant, no more driving, so we had to sell his car. Dad never rode in an ambulette unless it was an emergency. So I had to make sure I allotted enough time to pick him up, walk at his pace to get him in the car, pack up the wheelchair he was now using, and make sure the baby was in safe. There were many decisions that we needed to make in order to make his life more comfortable. He couldn’t live alone in his apartment he had for years, his landlord couldn’t risk another fall. Dad didn’t want an aide, so I convinced him assisted living would be the safest for his living. I truly felt they were important decisions. I was his voice, but at many times, had to voice what I thought he needed. We had many talks, with much rationalization. At times I felt like a liar, as I tried to convince him of ways that would make his life more comfortable. I saw the pain in his eyes, the embarrassment of giving up one more thing. But I had to keep a straight business like face. I had to let him know it would be alright.
Years passed, and after much deliberation, Dad decided to get the DBS surgery. This entailed many trips to the city (which was about 2 hours away) for doctor appointments, follow up appointments. Packing up his wheelchair in the car, or on the train, holding onto his arm, while holding onto my little girl. With the surgery, doctors placed probes inside the brain, connecting wires down his neck to electrodes planted in the chest area to stimulate/control activity. The remote could
start or stop the nervous system. Dad chose this surgery, as it was completely reversible, if there was a negative outcome or infection, the probes could be removed. Every five years after, he needed to recharge his batteries. We jokingly called him the robot. With his surgery he was able to walk again. But with the surgery, came depression and a loss of memory. Dad felt it was all worth the risk to be able to walk again. Right before the surgery, he was like stone. He was “frozen” more of the day than he was able to walk. I’ll never forget the follow up appointment. He walked up and down the hallway with the biggest smile on his face. It felt miraculous. Before the surgery, Dad was taking 600 pills per month, after the surgery, he was taking 4 per day. So now he could walk, but he could no longer talk. His vocal chords bowed, and his voice became a whisper. He grew more and more frustrated. When people couldn’t hear what he was trying to say, he would throw his hands up and stop trying. I learned to read his voice. It was difficult at first because he had a stutter before Parkinson’s. It became second nature to me, or maybe I just prepared for each step and knew what he was trying to say. This skill led to me being his voice, at doctor’s appointments, during conversations, anything to express his needs to people around him. He grew tired of writing his wishes on notes and grew more frustrated as people couldn’t understand what he was saying. He would often say, “I can’t walk, I can’t talk, I can’t drive, I can’t write”. He went through 2 vocal cord surgeries followed by vocal therapy (LSVT). Every visit to the neurologist was a “tweak” of medication here, a “tweak” of his battery there. I watched him go through the same follow up motions the doctor had him do. “Wiggle your fingers, wiggle your feet, clap your hands on your lap, and follow my eyes”. I was filled with sadness one moment, and laughed the next, as visiting his neurologist seemed like fun for my Dad. He would crack the same smile at me as I watched.
His embarrassment grew, as his sphincter muscle began to deteriorate. He had bowel accidents in restaurants, in the car, in the plane, in lobbies. It got so bad that he couldn’t go out as often as he wanted. He wore diapers, but it wasn’t enough. As he got weaker, he continued to fall. More falls led to more hospital stays. His disease was progressing. HIS disease. He owned it, it was all his, it robbed him, it became him.
One of the hardest parts of being a caregiver was thinking I could “fix” Dad. I pushed so hard for him to have a better life. On days he felt depressed, I pushed even harder. At the time, I didn’t realize that these were all milestones. Whether bad or good, they were milestones to be appreciated and understand that it all comes with the territory of this disease. I thought he would survive it all. And he did, he lived with Parkinson’s for 28 years. Dad passed away February 18, 2012. I’m not going to sugar coat it, there were many times though the years, I too was frustrated, many times that I sobbed, many times I was scared about the decisions I was making, but it was the biggest lesson I ever had to learn. He was the strongest man I have ever known. And I wouldn’t have traded that experience for anything in the world.
Be patient, understand, and accept that your loved one may not be able to do the things they used to do. Just show your support by listening and encouraging. And sometimes you just need to be there, when no one else is. Sometimes the smallest acts of kindness will bring the biggest smile; a silly joke, a hug, their favorite snack, watching a ball game on television, or even just sitting in silence together. After all, no one will understand you as much as you understand each other.
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