In The Beginning

It has been too many years since I’d sat at a desk in a classroom, I thought while looking through the Adult Community Class Winter Schedule. My 2013 goal was to write a memoir about our experience surviving traumatic brain injury (TBI). It had been a story I wanted to write for twenty-two years, but didn’t know how to go about it. I knew I needed knowledge and help with this goal, so I was especially interested by the “Writing Class” listed on the schedule. I didn’t know how I’d make time for this class between my work and caregiving demands, but I signed up for it anyway.

I recognized the familiar echoing taps of my shoes as I rushed down the large empty hallway of Indian Hills Middle School looking for the classroom.  It should have only been a ten minute drive, but it took me longer because I’d never been there before and it was hidden in a subdivision unknown to me. I opened the closed door, late as usual and unsure of what I’d gotten myself into. As I hurried to find the closest chair, the teacher, Brenda Bensch, smiled and welcomed me to the class.

Embarrassed by my tardiness, I apologized as she handed me the outline for the next several weeks. Although I wasn’t getting a grade or any kind of credit for the class, I wanted to do my best. I felt overwhelmed by the schedule. How would I fit writing on top of all my other responsibilities? I stayed focused on my goal and stuck with it.

Not the most flattering picture of me, but the only one I have with my writing teacher, Brenda Bensch (in the red) and my favorite classmate, Susan Knight.

That class and the next one in the spring influenced my life for the better and I have Brenda Bensch to thank for it. Some of her words of encouragement ring in my ears to this day. She taught if you want to be better at writing, you have to practice, just like anything else you do.  “Start a blog; write every day or at least three times a week.”  In my mind, I scoffed at the suggestion. There is no way I could make time to do that. I just want to focus on my book.  The more I wrote and had my chapters critiqued, the more I realized the importance of practice.

That summer Mark was hospitalized three times for blood clots. He got really weak so we spent twenty-one days at Rocky Mountain Care Center. While we were there, Mark’s occupational therapist, Jessica, suggested I start a caregiver’s support group. I thought, Where would I find time to do that? Jessica urged me by expressing the need, which she observed from other personal caregivers. “Your experience could be valuable to them.”

“Maybe I could start an online support group which could encourage and help other caregivers in the comfort of their own home and whenever it’s convenient for them.” Jessica loved the idea and just about every day for the duration of our stay she encouraged me to do it.

I work on a computer daily, but had no experience online. How do I create a website which could encourage caregivers? My talented daughter, Katie, designed Uniting Caregivers and taught me how to use it. I’m so grateful for her skills and patience with me in this endeavor.

My past writing experience has mostly been on a business level of composing demand letters for payments on delinquent accounts. Writing a book or an article is a very different style of writing and much more enjoyable I might add. I appreciate and I’m so grateful for my sister-in-law, Dianne, who proofreads every article and corrects my punctuation. She gives me the confidence I need to publish the article.

Today marks the second anniversary of Uniting Caregivers.  I’ve learned much about caregiving and caregivers through the story’s others have shared. Through my experience the past two years, I realize how therapeutic writing is. It has increased my understanding of others as well as myself. As I search for the right words to express my thoughts and feelings, I come to see things more clearly.

Every caregiver I see, I admire. They’re putting another’s need before their own wants. I feel their exhaustion and worry. I share their overwhelming responsibility and increased love for the person they care for. Without even exchanging words, I feel connected to them. I want to know about their story. How do they manage all they have to do? What keeps the love growing and resentment at bay? When would they have time to share their thoughts and feelings?

I’ve greatly benefited from this experience and appreciate you as a reader or a guest author. If you’d like to share your story, I’d love to publish it on Uniting Caregivers. It may seem like a daunting task, but I’ll help and support you any way needed. Your experience will be valuable to me and to others. We are in this together, encouraging and inspiring one another.

A Village of Support

Written by, Katie Wilson Ferguson

Last Sunday, I shared how I prepared to care for my dad for six weeks so my mom could recover from surgery, but I wasn’t the only one who prepared for the occasion.

My mom arranged for my stay by setting up a bedroom for me on the west side of their house. She cleaned out another room nearby for my home office. I had the closest bathroom all to myself. I liked telling people I occupied the West Wing. My mom wanted me to be comfortable, and I’m most comfortable when I have my own space.

Before the surgery, my mom’s friend and neighbor Michelle offered to bring food and find other neighbors to bring meals while my mom recovered. Not wanting to be a burden, my mom declined. Michelle texted me with the same offer, and I happily accepted. We had dinner brought in by friends and family for eight nights and many of those meals gave us leftovers for the following lunch. This helped alleviate stress as I adjusted to my new responsibilities. Michelle often checked in with me after my mom’s surgery knowing I would be more likely to accept help if we needed it.

My mom’s surgery was scheduled on a Tuesday morning. I moved in the Sunday before so I could set up my office and be ready for work on Monday, plus shadow my mom for a day before caring for my dad without her help. Although I’d seen her care for him since I was seven years old, it was the first time I watched with the intent of doing it myself.

My Aunt Dianne drove my mom to and from the hospital while I stayed home with my dad. The surgery was successful, but she was miserable with nausea for the first 24 hours. My Uncle Steve came to visit and decided to stay overnight so he could take care of her while I took care of my dad. Just as a harness once secured me to a zip line so I couldn’t fall, my uncle was my harness that night.

I woke up the day after my mom’s surgery feeling more overwhelmed than I had expected. My husband wasn’t there hitting his snooze button. My energetic Jack Russell Terrier wasn’t there sniffing my face to make sure I was alive. She wasn’t there for me to take on a morning walk. I knew my dad was down the hall waiting for me to get him dressed, out of bed and fed.

For the first time in my life, I felt the weight of knowing another person was relying on my care. It didn’t feel like a burden. It felt like going into a job interview. I wanted to be there, but I was nervous I might not be good enough to fill the position and do a good job.

2015, Katie transferring Mark

I got my dad dressed, up and fed. My Uncle Steve checked in on us before leaving for the day. “Did your dad get his pills?”

I slapped my forehead. “No! I forgot! I woke up this morning and realized why I’ve been so nervous to take care of my dad. I’ve never had someone depend on me to get them out of bed or to feed them or make sure they’ve had their pills. I’ve been so worried I’d forget about my dad’s pills. I can’t believe I forgot on the first day.”

“Hey, it’s okay. Take it easy on yourself. You don’t have to be perfect.” Uncle Steve always has a knack for knowing how to make me feel at ease.

Because my dad has a poor short-term memory, he is no longer capable of taking his own medicine correctly. Years ago, he got confused on the day of the week, thinking it was Friday when it was actually Thursday. He saw he had pills left in his box so he took a double dose of everything that day. The overdose caused a two-day hospital stay. Overdoses are dangerous, but so are missed doses. One missed dose increases his likelihood of seizures and blood clotting.

My parents and I felt an outpouring of love for the next several weeks. Family and friends checked in with phone calls, text messages and personal visits. Some loved ones sent my mom cards, flowers and gifts. Not only were people asking my mom how she felt, but they were also asking me how they could help. I’ve heard the saying “It takes a village to raise a child.” I think it takes a village to conquer many of life’s challenges – including caregiving. My parents and I are blessed with a strong village of support.

My full-time caregiving adventure didn’t always go smoothly, but we had a lot more successes than failures. My mom understood when I forgot to give my dad his pills. My dad forgave me when I sat him on the armrest of his wheelchair instead of the seat. My dad’s response to every apology was “no prob.” I heard that response a lot.

My dad’s patience amazes me. I almost dropped him several times while transferring him in or out of his wheelchair. I’d stand him up and start to feel his knees bend and his waist drop before I was ready to sit him down. “Stand up! Stand up!” I yelled in frustration. I hurt him a few times (without causing serious injury). He never lost his patience with me.

My dad is a pleasure to serve because he’s one of the most appreciative people I know. There were days I got tired of saying “You’re welcome.” Then I’d remember it was a blessing to help someone who acknowledged every good deed.

2015, Eldin and Lizzy

I’d like to follow my dad’s example of appreciation by thanking my village of support. Without the help I received, taking the plunge of accepting caregiving responsibilities would have been even scarier.

It’s been six weeks since I moved back into my own home. I hear my husband’s alarm clock every morning again. I start each day walking my dog. I went back to my usual routine without missing a beat, but with a deeper understanding.

So, here’s to all you caregivers: You wake each morning knowing someone else depends on you. Who knows how many mornings you’ve had to drag yourself out of bed after a long night of helping your loved one or cleaning up midnight mishaps? Who knows how many times you’ve felt at the end of your rope? Yet you choose to hang on for the person you love.

And here’s to those of you who rely on the care of others. You have to wait for others to assist you day after day. You’ve endured extensive testing and rehabilitation. You’ve been deprived of abilities others take for granted. Perhaps you endure hardships few people understand and maybe it’s difficult to express how those hardships affect you. Perhaps you endure physical and emotional pain no one can heal – yet.

Caregivers and care recipients alike have spent endless hours waiting at doctors’ offices. Together, they’ve experienced unfamiliar territory and anticipated the unknown. Their relationships have been challenged beyond arguments of whose turn it is to wash the dishes and where the toothpaste tube should be squeezed.

You caregivers and care recipients have been given a weight few people have the strength to lift. Thank you for lifting that weight and carrying on. I learn from your examples and admire your strength. I believe you add an exceptional level of beauty to the world. I hope you feel you have a village of support. I appreciate my mom for increasing a village of support through the worldwide endeavors of this blog.

Thank you Katie for your insights and words. I appreciate you sharing your experience and grateful for your help. Thank you Eldin as well. You were a marvelous help when Katie wasn’t able to be here and a great support while she was here. What a wonderful addition you are to our family. We also enjoyed Lizzy and the great cleanup job she did after every meal. I enjoyed watching her wait patiently by Mark’s chair for the food to drop.

My Father Didn’t Tell Me

Our daughter, Katie is a graphic designer and owns Graphic Forte. She designed this saying along with many others shared on Thursday Thoughts. She shared her story last Sunday, Dad Creating Beauty After Tragedy. I appreciated her story and that she realizes not only did the scene of her life drastically change by the car accident, but so had her dad’s. He is a survivor of a traumatic brain injury and she has learned much from him. I’m so grateful she has memories of her dad before the accident. I use to worry the kids would not remember their dad as I did because of their young age.

Katie states, “As a seven-year-old child through adulthood I saw my dad use his tragic and life-changing disturbance to create a new kind of beauty.” She learned important lessons from him, not because he told her, but through his example.

She learned, “the value of perseverance as he pushed through strenuous therapy as he learned to feed himself and speak again.”

He showed her “how burdens can be lightened by having a sense of humor. He often told people the scar on his stomach from the feeding tube he had was really a second bellybutton, which made him ‘twice the man.’”

I now understand the benefits of taking our children daily to the rehab center. Not only did the kids grow from Mark’s example, but the kids encouraged him and gave him reason to work hard at regaining every ability. Mark’s rehabilitation was a family affair and in an unusual way, or at least one we wouldn’t have chosen, it made our family closer than we might have been otherwise.

I know we continue to benefit from Mark’s example—actions do speak louder than words.

We’re looking forward to the next Sunday Story and reading how the transformation affected Katie’s life throughout her teen years and as an adult.

Dad Creating Beauty After Tragedy

1987- Katie wearing her dads coat following him on a log walk

Written by, Katie Wilson Ferguson

When I was a child, I saw a few episodes of “The Joy of Painting,” featuring the famous landscape artist, Bob Ross. I thought the skinny white painter looked funny with his big brown Afro. His thick beard barely moved as he softly spoke about the different techniques and tools he used to paint. His serene ponds and lakes mirrored colorful trees and majestic mountains textured with highlights and shadows.

Just when his paintings seemed perfect, he’d slap dark paint down his canvas. “No!” I’d holler in my head. “What are you thinking?” He disturbed the tranquility he’d just created with what seemed like an ugly mistake. He added highlights to the dark line, creating the texture of bark. He pushed his brush loaded with green paint against his canvas, creating speckles of leaves. He gradually turned the dark line into what he called a “happy little tree.” He transformed his canvas with a new kind of beauty.

I don’t think life is ever picture perfect for anyone, but my early childhood was close. I grew up with two loving parents and a brother 16 months older than me. I was blessed with a healthy body and a comfortable home.

1990- Mark climbing Mt. Aire

1982 – Mark snowmobiling

 

 

 

 

 

 

 

 

The four of us loved dancing, biking, hiking, snowmobiling and three-wheeling. My dad was my favorite person to ride with on the snowmobiles and three-wheelers. He drove fast and took jumps even with his little girl’s arms squeezing his waist as she squealed behind him.

Mark with Christopher and Katie 1991
Just a few days after waking from his coma

The canvas of my childhood was transformed almost two weeks after my seventh birthday. My cousin was babysitting my brother and I while my parents were house hunting. The phone rang. When I got on the phone, I heard my mom’s voice crack. I could envision her chin quivering as it does whenever she starts to cry. “Your daddy’s hurt,” she said.

I learned my parents were in a car accident. I didn’t know the extent of my dad’s Traumatic Brain Injury at that time. But if my mom was scared enough to cry, then so was I. I cried a lot that night.

Days later, my mom sat at the kitchen table with the two of us kids. Her right arm was in a sling. She had my brother make a paper origami-like box, something he’d recently learned in school. She explained how a pickup truck hit our family’s small Hyundai on the passenger’s side where my dad was sitting. She pushed in one side of the paper box as if it were a replica of the damaged car. She explained the impact of the accident pushed the car across the intersection and into a light pole. She pushed in the other side of the paper box, indicating how the pole smashed the driver’s side of the car, just behind the driver’s seat where my mom was sitting. The impact caused my dad’s head to hit the inside frame of the window and then swing to his left and hit my mom’s right shoulder, shattering the right side of her collar bone.

I later asked my mom if the man driving the pickup truck was in jail for hurting my dad. She explained the accident was a mistake. Nobody meant to hurt him. All I knew was my dad was in a hospital instead of home with his family. I thought someone should be punished for that.

I didn’t get to see my dad for the first six weeks he was in the Intensive Care Unit because my mom thought it would be too scary for her little kids. That was a wise decision. He lay comatose in a rotating bed. He was hooked up to tubes and machines, which made unusual noises. One of those tubes was a shunt in his head to relieve fluid on his brain – something no child wants to see.

My mom decided it was time for us to see our dad after his condition became more stable and the shunt in his head was removed. He was still comatose, but I was excited to finally see him. My excitement shattered when I walked into his room. The man I once saw smash his finger with a hammer without shedding a tear lay helplessly unconscious. Tubes connected his lifeless body to machines. He was dependent on technology and the care of others. It was my first time seeing him vulnerable.

I was scared. I recognized his face, but how could he be my dad? My dad was strong enough to lift me onto his shoulders so I could see parades over large crowds. My dad did sit-ups every night with his toes tucked under the couch as I sat on it and counted his sit-ups aloud. My dad killed spiders for me and read bedtime stories to me. I didn’t want to go near the lifeless body in the hospital bed.

1987- Mark and Katie rafting on Mirror Lake

1986 – Mark carrying Katie in his usual way

 

 

 

 

 

 

 

1987- Katie and Mark having fun in the pool

1986 – Katie teaching her dad how to walk on the beam

 

 

 

 

 

 

 

That night, my brother and I slept at my grandparents’ house like we often did after my parents’ car accident because Mom stayed at the hospital. My grandma prepared the sofa pullout bed and tucked us in under the covers. Instead of singing us lullabies, she quietly played the piano on the other side of the room. I slipped into         dreamland.

I dreamt I was sitting in the same bed I had fallen asleep in while wearing the same pajamas. My brother was sleeping to my right. When I looked to my left, I saw my dad standing – yes, standing – at my bedside! He looked tall and handsome in his Sunday suit. He didn’t say a word to me, but his warm smile soothed my fears and I was no longer afraid of him.

My dad was in a coma for three months and hospitalized for eight. He came home just in time for our family to spend Christmas together. He was in a wheelchair and dependent on my mom’s care.

1992 – Chris, Mark, Katie

While growing up, some friends asked me what it was like having a dad in a wheelchair. My brother and I helped my mom dress and care for my dad, especially when he first came home from the hospital. I learned how to help around the house and be more independent at a younger age compared to most of my friends. Our family could no longer dance, bike, hike and snowmobile together like we once could.

The scene of my life drastically changed, and so had my dad’s. But like Bob Ross transforming a dark and ugly line of paint into a “happy little tree,” I saw my dad use his tragic and life-changing disturbance to create a new kind of beauty.

He taught me the value of perseverance as he pushed through strenuous therapy. He learned to feed himself and speak again. He liked to say P.T. (physical therapy) really stood for “pain and torture.”

1992 – Mark kissing his little Princess

He showed me how burdens can be lightened by having a sense of humor. He often told people the scar on his stomach from the feeding tube he had was really a second bellybutton, which made him “twice the man.”

My dad (who wasn’t expected to live) not only survived, but thrives with a positive attitude. I’m blessed to call him Dad.

Next week, I’ll share how this transformation affected my life throughout my teen years and as an adult.

 

Thank you Katie for sharing your story. You and Christopher have been our inspiration. Your encouragement and love kept us striving to do better and to never give up. While searching for the pictures to use, my “chin was quivering, just as it does whenever I start to cry.” My heart truly broke the day the accident happened. Not only for your dad but for you and Christopher too, but as you so elegantly reminded me—it’s a beautiful heartbreak. I’m so blessed and proud to be your mother!

HAPPY FATHER’S DAY TO ALL THE GREAT DADS! I’m lucky to have one and to be married to another. I’m grateful for all the men in my life.