Carry On

July is full of outdoor activities and celebrations that last all month long in Utah. It’s my favorite time of year with family reunions, outdoor plays, concerts, parades and many festivities to look forward to. The sun rises early, which makes it easier for me to do also. The weather is usually sunny and the daylight lasts until 9 pm, making this month the one to accomplish the most outside. I always have great aspirations for this month.

This year we started the month out by driving to Vancouver, Washington with our daughter, Katie. We enjoyed visiting with Mom Wilson, Karen and Mark Ray. Lucky for us our son, Christopher, lives just across the Columbia River in Portland, Oregon making our visit quadrupled the fun. We enjoyed an Independence Day celebration at the park with energetic music, food trailers, beautiful fireworks and the great company of family. It’s always hard to say good-bye to loved ones especially without knowing when we’ll see them again. We made the long trek home in about fourteen hours, which includes our fuel and rest stops.

My asthma flared up during our trip and I struggled more than usual to get it under control. When we returned home I went to the doctor for what I thought would be just a medication change. I left Mark home alone, expecting it to be a short doctor’s visit since I was her second appointment of the day. My oxygen level was low so they gave me a breathing treatment and oxygen, which confined me to the room until my oxygen level reached normal.

Two hours later, I left the room anxious to get back to work and to Mark. Remodeling construction had started near the large entrance/exit sliding glass door of the building. With no cone or sign before it, I didn’t see the piece of metal track that had been attached to the tile floor during my doctor’s appointment. I tripped and fell on it, landing hard on the tile, dislocating my right shoulder.

Dislocated Shoulder 07/08/16

My body wrenched in pain like I’d never felt before. I tried to get up, but couldn’t. A man came to my aide and before I knew it, I was sitting in a wheelchair and whisked to the Urgent Care Clinic in the building.

I heard someone report I was in and out of consciousness and my vitals dropped. “Call an ambulance; she needs to go to the hospital.”

“Please put my shoulder back in place,” I pleaded. “I need to get back home to my husband.”

The look on the doctor’s face helped me realized how silly the statement sounded, so I explained. “My husband has a traumatic brain injury and is confined to a wheelchair. He depends on me to get him in and out of the chair.”

“I don’t believe you’re going to be able to lift him for six to eight weeks,” he said while placing an IV for fluids and another one for morphine.

The first stranger who rushed to my aide looked at me drenched in perspiration from the pain and in sympathy said, “I’m sorry. Don’t worry about the medical cost. We’ll take care of you.” I assume he was the job foreman.

Submissive to all the medical team requests, I moved every which way they asked as they transferred me to the stretcher and rushed me to the hospital. For the next three hours the only thing on my mind was getting my shoulder back in place. My right arm went from feeling like it weighed 100 pounds, to numbness, to sharp, shooting pains running down it. I was sure my arm was dying and at times I thought death would be my only relief. No matter how many times I begged them to fix my shoulder there were tests that needed to be done to make sure I didn’t need surgery or an x-ray that had to be taken to show the best way to maneuver it back in place. Finally I was given a conscious sedation and like Humpty Dumpty who fell off the wall, I was put back together again. Instant relief followed, but then came the body shakes, which I will take anytime over the pain of a totally dislocated joint.

Healing shoulder, 07/19/16. The bump on my clavicle is from the break 25 years ago. I’m glad it didn’t break again!

I’m an aging caregiver who is dedicated to the love of my life. My worst fear is not being physically capable of caring for him. I’ve always known it’s a possibility, but I don’t know how to prepare for it. I know the options and none of them feel right. Even the option of relying on family and friends for help ties my stomach up in knots.

This year the sunny month of July has been the darkest I have felt in a long time. Depressing thoughts linger because my body can’t do what it wants to do. With my arm splinted in a sling and strapped to my side to allow torn tendons and ligaments to heal, my mind keeps focusing on the negative aspects of my life. Having to depend on others to help with Mark’s care for several weeks makes it hard for my heart to find hope in a brighter future. How do I dig out of this gloomy place and feel the sunshine in my life again?

Annually on July 24^th, our state honors the Mormon pioneers who arrived in the Salt Lake Valley in 1847. I imagine after pulling handcarts or driving wagons with oxen or horses across the plains more than a thousand miles, the pioneers were happy to settle the desert landscape now known as Utah. Last week our celebration reminded me their trek exemplifies courage and faith. Their stories inspire me. They endured harsh weather, death of loved ones and starvation as their food and water supplies diminished.  Nothing had prepared the majority of these travelers for the exhaustion, illnesses and injuries they would suffer. They were beginners in a new territory, learning a new way of life.

I see similarities between my caregiving trek and my pioneer ancestors who walked approximately 1,248 miles from Nauvoo, Illinois. Although we thankfully have the comfort of a home with plenty of food and water, nothing had prepared me for the anxiety and exhaustion of caring for another, or the illnesses and injuries which keep arising. As we make it through one challenge only to receive another, I continue to be a beginner in a new territory, learning a new way of life that most people can’t fully understand. I am a modern-day pioneer and so are you as we struggle through our own personal trek. This connection gives me courage and faith to carry on.

The pioneers didn’t know how or when their journey would end. Similarly, I don’t know how or when ours will end. Like my ancestors’ examples, I’m committing to carry on with faith in every footstep for a brighter future. Even if we don’t reach our desired destination in this life, I believe we’ll be blessed beyond the grave, free from the harsh physical ailments which we have endured. With confidence, I picture this celebration far grander than I’ve ever witnessed and possibly can even imagine.

Just as I started the month of July with great aspirations, I end it with the same for the future and will carry on as best I can.

 

Our Ultimate Goal

By sharing our stories, tips and/or thoughts  we get a look into each other’s hearts which helps us appreciate the unique challenges each one of us face. It also helps us realize we’re not alone and points out what we have in common.

I’m grateful for all the past and present guest authors on Uniting Caregivers who have helped me reach my ultimate goal of increasing love, patience, tolerance, care and understanding. If you’d like to  be a future guest author, that would be wonderful! I believe you have something we can benefit from. If you have a thought, tip or story you’re willing to share, I’d be happy to help you publish it. If it seems overwhelming and you don’t feel like you can do it, please know I’ll be there every step of the way. Let me know if you’re interested by leaving a comment in the box at the bottom of this page or by sending an email to Barbara@UnitingCaregivers.com.

Thank you, Cally Johnson, Pamela Clark, Judy Coon, Silvia Caswell, Jamie Sorensen, Glenn Oliver, Cindy Oliver, Dianne Breitling, Julie Brown, Barbara Larsen, Deidre Pickering, Katie Ferguson, Ann McDougall, Eric Reynolds, Tim Gray, Laura Norfelt, Greg Norfelt, Rosanne Day, Chuck Ferguson, Neils Knudsen, Mark Wilson and our current guest author, Christine Scott. To revisit any one of their stories, type their name in the search bar on the home page and it will take you to that individual’s article or list of articles in some cases. I appreciate each of you sharing your unique challenges and wonderful tips which help us reach our goal of better understanding one another.

True Colors

As a parent or any other caring person, it’s heartbreaking to see children or people with handicaps struggle to be accepted. I have always loved the song True Colors, but when I saw this video I fell more in love with the message. Life has enough challenges without the sadness of rejection. Treating everyone with love and respect is the answer. I hope you’ll share the video with your kids.

MattyBRaps ft Olivia Kay

By Cyndi Lauper

You with the sad eyes
Don’t be discouraged
Oh I realize
Its hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colors
Shining through
I see your true colors
And that’s why I love you
So don’t be afraid to let them show
Your true colors
True colors are beautiful
Like a rainbow

Show me a smile then
Don’t be unhappy, can’t remember
When I last saw you laughing
If this world makes you crazy
And you’ve taken all you can bear
You call me up
Because you know I’ll be there

And I’ll see your true colors
Shining through
I see your true colors
And that’s why I love you
So don’t be afraid to let them show
Your true colors
True colors are beautiful
Like a rainbow

Giving Thanks

It’s that time of year when we are focused on giving thanks, yet every day should be a day of thanksgiving. But it’s hard to give thanks in all things. I haven’t thought of giving thanks for a car accident which caused my husband to be comatose for three months and hospitalized for rehabilitation for another six months. I’ve not said I was grateful for thirteen surgeries and years of therapy he’s had to have due to his traumatic brain injury. I’ve never thought I was thankful for an accident that caused him to lose his ability to work as a master electrician, seemingly wasting four years of apprenticeship schooling plus two years of journeyman experience and testing before earning his master’s license. It’s difficult not to envy people who can travel and do other fun activities as they please, while it’s problematic for us to visit the neighbor next door or a friend’s home due to stairs and a wheelchair that doesn’t climb them on its own. Life is complicated and unsettling when you live with seizures and have the worry of blood clots due to the inability to move freely. The list of concerns and complaints could go on, but I’ll spare you more grief.

When I think about what we have missed out on and the unfulfilled expectations of life, I’m unhappy. I realize I need to change my focus and count my blessings. I should not compare my life to another—just my own. How far we have come and what blessings we have gained while overcoming our struggles. I am happiest when I recognize and appreciate what I have.

I am thankful for life and realize every day is a bonus day and must not be taken for granted. I appreciate the education of doctors, nurses and therapists who have developed the skills to help heal and improve our health issues. I’m grateful for the hard work and progress Mark has made through surgeries and years of therapy, which has enhanced our quality of life.

Because it’s challenging to travel, we find fulfillment in simple things such as gardening, canning, reading, writing, playing games, listening to music, putting together puzzles and other activities at home. I’m grateful for our comfortable, wheelchair accessible home, which always gives me something to fix up or improve and the space I need to be able to work at home. I appreciate my employment in property management which enables me to pay for all the necessary things in life. I am fortunate to have wonderful bosses and friends such as Steve and Rick. I appreciate all they do for me on in our business as well as my personal life. I am also blessed to live with Mom and Dad. I am grateful for their continued love and support and I’m thankful we can help each other in all things by living together.

I appreciate my children, siblings, nieces, nephews, cousins, aunts and uncles, who I know I can count on for help at anytime or in any situation. They are the foundation for everything we accomplish along with the love and support of neighbors and friends. Many people volunteer their precious time to help us.

With the loss of some abilities we have gained others. I am grateful for every course in life, good or bad, which gives us knowledge that can never be taken away or become useless. Our self-confidence improves as we realize we can overcome grueling circumstances. Our compassion towards others has grown, along with the ability to understand their needs and our desire to help has intensified. We no longer take for granted the human adaptability and the drive to conquer challenges. We are inspired by people’s good will and how they strive to do their best. It gives us hope and the desire to do likewise.

We are blessed by many people—family, friends and neighbors who give service, love and support to us. Our need to give back is the driving force for writing our story and developing Uniting Caregivers. This recent passion has brought new friendships through writing and caregiver’s support groups, along with readers and participators of this blog. I have learned so much and have gained from their experiences. I am grateful for the influence of other writers and their encouragement in my own writing endeavors. I appreciate my sister-in-law, Dianne, who edits nearly every article before I publish it to make sure I’ve punctuated correctly and that my writing makes sense.

If you are reading this, I am grateful for you! I appreciate your feedback, whether it’s done with words or the click on the Like button. In just over a year, Uniting Caregivers has had several exceptional guest authors participate and nearly 16,000 views. I hope what is written has helped you find hope and encouragement in your trials. I have truly been blessed in my life’s journey and writing about our experiences manifests those blessings to me. So I must say—if I’m grateful for everything I’ve listed above, I need to be grateful for a terrifying car accident which switched our life’s track dramatically and helped me understand all that I’ve written and hopefully has changed me for the better!

Every day should be a day of thanksgiving. When I focus on my blessings I am happier and life is easier. Being grateful makes what I have more than enough.

Evey’s Story Update

Nate and Cally Johnson were my first guest authors on October 27, 2013.  Over the past nine months, their daughter, Evey, has made some remarkable improvements, along with some setbacks. I invited them to give us an update, which they so graciously accepted. The first two paragraphs are from their first article, Evey’s Story.

Written by, Cally Johnson

On May 31, 2012 our lives dramatically changed for the better. Our daughter Evey, our fourth child, was born that day with an extremely rare genetic disorder called 17q21.31 micro-deletion syndrome. It is also known as Koolen-de Vries Syndrome.

There are only 200 reported cases throughout the world of this syndrome. Essentially, Evey is missing hundreds of genes throughout her 17th chromosome, which, in turn, affects every cell in her body, and how she develops both physically and mentally.

If there’s one lesson I have learned as a caregiver it is to expect the unexpected. There’s a fine line of balancing expectations with optimism and being realistic without being pessimistic. As I watch other caregivers who are further along in their journey, I always admire the grace they exude when navigating their own specific journey.

Evey has had setbacks and major triumphs over these last twelve months. One of Evey’s major challenges is severe scoliosis.  Because of this, she has two titanium rods placed on both sides of her spine. It required extensive surgery to put them in, and she needs them surgically adjusted and expanded every 6 months as she grows until she stops growing at the age of fourteen. At that time they fuse her spine and by then she will have had more than thirty spine surgeries, not including several other surgeries she will need along the way.  Most people see this as such a daunting undertaking for a caregiver, but I’ve learned to appreciate the consistency and schedule. If only all of Evey’s life could be so well scheduled, without unexpected surprises.

Because of Evey’s scoliosis, the doctors and therapists were not sure if she would ever crawl or walk.  They’d never seen such a young patient with her complications walk or eat on their own.  I’m happy to report that over the last 3 months, Evey has learned to eat by mouth, and is no longer dependent on her feeding tube.  A few weeks after learning to eat, Evey started to bear weight and can now get herself into a standing position and she can take steps in her walker.  She has completely shocked her team of doctors and therapists.  She also completely shocked us, her parents, since we just hoped Evey would stay the happy little girl she is regardless of whether she could ever eat or walk on her own.  We were so excited that she had a spurt of development and is turning into quite the independent two-year-old.

Between these new developments, we have also had some surprising setbacks.  We learned she is losing her hearing from some growths in her ears from repeated infections.  Evey had to have ear surgeries in between spine surgeries, but we are no longer surprised by the unexpected and we had so much positive going on, we didn’t really have time to dwell on this new-found, disappointing discovery. Thankfully, with hearing aids, she’ll be able to obtain some hearing and we are now immersing the whole family in Sign Language to help Evey throughout her life.

It has been such a growing period over these last few months adjusting to Evey’s triumphs and challenges.  We are slowly learning, as caregivers, how to manage expectations and how to continue to be Evey’s biggest cheerleaders for her triumphs.  We hope as time goes on we will continue to learn how to keep disappointment at bay and to always keep the expectations optimistic.  Thankfully, we have met so many people along our journey with Evey who have shown us how to be as graceful as humanly possible in this adventure which is always unpredictable.

Thank you, Cally, for sharing your story. You are a wonderful mom and caregiver to a very special daughter!

 

 

Caregiving Reflections

Written by, Dianne Breitling

Mother’s Day has become a time of reflection for me as I remember the final years my mother and I spent together. The hours we shared as well as those spent doing things for her are precious to me now, filling my heart with gratitude for circumstances which allowed me this privilege.

My mother had spinal disc problems which resulted in several surgeries and constant pain. She also had to have both hips replaced. Because of her physical limitations, my father became her caregiver doing all of the cooking and housekeeping for about fifteen years. Late in life my mother developed severe arthritis, which greatly limited the use of her amazingly creative hands. Through it all, my mother could always be seen with the most wonderful smile on her face. She loved people more than anyone I have ever known. For the final eighteen months she was in her scooter most of the time because the pain had become more than she could bear when walking.

At age 85, my father had a minor car accident, making him feel unsafe on the road. His wise decision to stop driving was the start of my journey as a caregiver for both of them. Since I lived close by, I gladly took on the responsibility to drive them wherever they needed to go such as doctor and dentist appointments, getting haircuts, and shopping as well as picking up prescriptions or any other household or personal items they needed. This was a difficult transition for my father since he had been the caregiver for my mother for so many years.  He went from doing everything for the two of them to depending on others in a relatively short time and each loss was painful for me to watch.

Both of my parents became so comfortable with me doing things for them that even when my siblings offered to help by taking them to their doctor’s appointments, they wanted me to do it because I was familiar with their needs and knew the doctors they were seeing. They also preferred me to do the shopping over my siblings because I knew their likes and dislikes.

Dad became very ill and had an emergency colostomy, changing our world drastically. I spent countless hours with him in the hospital trying to get answers from the medical team and worrying that we might lose him, while still caring for my mother’s needs. When he returned home it became clear I could not carry on with everything I had been trying to manage while adding the new burden of changing his colostomy bag regularly. My brother would sometimes do this, but he had irregular work hours and lived further away so it was difficult for him to be there at the needed times. The responsibilities had fallen on me because of how close I lived to them and because I was the only child who did not have a full-time job.

After three years and growing needs, I requested each of my siblings to take one day to check on them. They were asked to make sure our parents had everything they needed and to help with dinner if necessary. When our father was in the rehab center, the scheduled person for the day was responsible to lay out breakfast, medications and check on mother by phone in the morning. This gave me two assigned days instead of the five to seven days I had been used to, but even that became difficult because if someone couldn’t meet their obligation my mother would call me and ask me to come over. Calls early in the morning or late at night were a regular occurrence. Often I would hear from my parents and my siblings that I was a life-saver or they wished I didn’t need to do so much, but after years of struggling with so many responsibilities, those words were not enough. I can see now it would have been so much better if I had been able to convince my parents to let me hire some outside help, but when I was in the middle of the experience, it was hard to know what to do. Looking back usually changes the perspective and solutions become clear.

In 2010 my father was hospitalized with a severe infection (MRSA) and while in rehab, he agreed to move into an assisted living center. My brother, sister and I made the arrangements, but at the last-minute he changed his mind. He didn’t want to give up the little bit of independence he still had, making those last days in his home emotionally difficult for both of us. I wanted to help make it possible for him to live at home, but told him when he could not prepare their meals that would no longer be possible. Both parents refused the idea of having Meals on Wheels delivered or having someone come in to cook and clean a few times a week. At this time the emotional strain was increasing because they knew I was making it possible for them to live in their home. This created feelings of gratitude, but also resentment towards me because I had too much say about what happened to them.

After a second bout with the MRSA infection, my father realized his strength wasn’t returning and once again asked me to make arrangements for them to move into an assisted living center. My father only lived there for five months before he passed away. My mother was lonely and continued to need attention after his passing. My siblings and I continued our daily schedule of checking in on her for the additional thirteen months of her life at the assisted living center.

Through all of the years of caregiving, my husband was always supportive. Not only did he spend time doing many things for them, he never complained when he came home to an empty house and no dinner or when our lives were put on hold while I met the needs of my parents.

As I reflect on the time spent caring for my aging parents, I realize the major challenge was recognizing the weight which came from the cumulative effect of the responsibilities taken on. The coordinating of two households with the added worry and care of their declining health was extremely difficult.

While I missed spending time with my children and grandchildren during this time, I am grateful I was given the strength to care for my parents during their final years. When I look back on this experience, it is clear that the blessings far outweigh the sacrifices. My feelings are joy and comfort because I have no regrets. I’m happy they are in a better place without health complications and pain; but      I love and miss them both.

Thank you Dianne for your caregiving example and for sharing your experience on Uniting Caregivers. What a wonderful daughter and big difference you made in their lives.

Love Is

Our daughter Katie was recently diagnosed with thyroid cancer and had her surgery yesterday. All went well and I’m so grateful for wonderful doctors, nurses and The Huntsman Cancer Institute for wonderful care. Most of all I’m thankful for my son-in-law who takes great care of Katie. Eleven years ago when Eldin told us he wanted to marry her, Mark said, “you know I call her princess and she is one.” He agreed and treats her as such. It’s rewarding to watch young love flourish.