What Doesn’t Kill Us Makes Us Stronger, Part 2

I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience. They spoke last week at a combined Survivor and Caregivers Support Group sharing what they’ve learned.

Written by Laura Nordfelt

The medical helicopter which came to life-flight Greg was very old and small. In fact, half of his body was in the nose of the aircraft. The ventilator was broken and one of the paramedics was trying to bag Greg (it seemed sporadically) while trying to preform many other tasks. I mentioned to her I was an EMT and asked her if I could do the bagging for her. She agreed and I continued on every 4 seconds like I was trained to do in school. The flight seemed to take forever (I worried we were going to Canada!) and only looked out the window once or twice. When we started to land, all I saw was a “tough shed” structure on top of a roof.  Medical people ran out to get Greg and down an elevator we all went and into the Emergency Department. By the time I felt comfortable enough to leave his side, I asked, “Where are we?” When they told me Coeur d’Alene, ID, I told them I needed to take Greg to Salt Lake City, but the doctor told me he would not survive the flight. I slumped down against the wall and lost it.

I made mistakes. I am fiercely independent and a stubborn woman. In the beginning I turned family and friends away. I said “don’t fly up here, I’m fine”. Then, “we don’t need meals, I’ve got this covered.” Not only did I watch him crash, but I kept him alive for 45 minutes until the paramedics arrived. I was a mess! I had post-traumatic stress disorder (PTSD) and I was in a cocoon as much as Greg was in a coma.

An Executive Vice President from Greg’s work came to the hospital to visit and I cut her off down the hall and visited with her. There’s no way I was going to let her see the condition Greg was in. I was so worried that he was going to lose his job. I posted a sign “Family Only” on Greg’s door at the hospital. Visitors had to check with me or the nurse before entering his room. I took the phone off the wall and put it in a drawer and took his cell phone away from him. He wanted to call his office to “check on things” all the time. I was worried he’d say something inappropriate.

When Greg left the hospital, I sent out a message on Facebook telling our friends that Greg needed time to rehab and recover so if they could wait to visit, that would be much appreciated. I really only meant it for acquaintances, thinking our close friends wouldn’t take it to heart. A few months down the road some dear friends of ours called and asked if they could bring dinner and come for a visit. I was thrilled! Frankly I had wondered why they hadn’t called sooner.

While we were setting up dinner, she told me they would have come sooner, but wanted to respect my wishes of giving us our space. I said, “Oh, I didn’t mean you guys!” I realized then that I had alienated the very people Greg and I needed the most. Greg’s co-workers later expressed the same emotions. If only they’d known what to do. They wanted to help in any way, but we pushed them away.

I own a business and I needed someone to sit with Greg or run him to therapy appointments, but I said “NO, I’m fine”. I really wasn’t fine, but I wanted to be and I didn’t know how to let them help. Most of it was my fault, but some of it was not.  Caregivers leave the hospital with their tool bags pretty much empty. I had to earn my hammer, saw and screwdriver the hard way. I felt neglected, isolated, abandoned, ignored, lonely, unsupported, disrespected and misunderstood. When I needed family and friends the most, they were all gone.

In order to heal, I had to get outside of myself. I started the first ever Caregiver Group in Utah as a survival mechanism. As much as I wanted to give back to the community, I needed other caregivers. As I spent time listening to their stories, I felt not so overcome by my own problems. I felt empathy and compassion. When “in the moment” of caring for caregivers and survivors, their hurdles felt more important than my own. When we get caught up in these “feel good” experiences, we don’t need anything in return. I also joined the Board of the Brain Injury Alliance of Utah. This is my passion now!

Another way I healed is a couple of years ago a friend asked me to join her book club. I love to read, but I was scared at first because I only knew her and no one else. I went one time and almost did not go back, but forced myself to hang in there. These women are now very near and dear to my heart. I’ve read many wonderful books which I never would have picked up on my own. The social setting has its benefits as well. We trade off hosting dinner so I’m learning new recipes. I work on my listening skills and forget my problems for a few hours. By the very nature of getting together with women, it forces me to get out of my pajamas. Therefore, I get semi-dressed up, put on my makeup and lipstick and wear my fun jewelry. All of this is very good for my soul!

Thank you, Laura, for sharing your experiences and what you’ve learned. Friedrich Nietzsche was right, “That which does not kill us makes us stronger.”  I see that in Greg and Laura’s life and hope you see that truth in your own life.

My Broken Habit

I can’t believe it’s been over three months since I’ve written on Uniting Caregivers. I’ve missed it and the therapeutic nature writing is for me, but as with any good habit, they are hard to start and easy to break. Why is the opposite true with bad habits? They’re too easy to start and hard to break. Now that I’ve broken my writing habit, I’m struggling to know where and how to restart.

A lot has happened in the past few months. December is always a crazy month with it being the end of the year and the holidays thrown in the mix with related parties. It’s joyful and stressful all wrapped up at the same time. This year my mom, who is the supreme organizer and chief executive of all our family gatherings, was not feeling well so my siblings and I tried to step up to the task. We enjoyed our time together, but nobody can fill my mother’s shoes.

Arthritis and a bad hip are keeping my mother in constant pain and making it very difficult for her to move. Using a walker has been a hard recommendation for her to follow, but for safety sake’s she reluctantly agreed. My mother has always been the ultimate caregiver to those around her, yet it’s difficult for her to accept help from others. Switching roles is a hard transition for all of us, but there isn’t a better alternative than to accept health problems and make the best out of life challenges. Therapy and cortisone shots are her best hope now and she’s doing both.

Dad works hard to keep up with his new household responsibilities in addition to all his old ones. Assisting Mom with cooking meals and doing laundry along with driving to every doctor and therapy appointment can be strenuous. Living in the same household with them has been a blessing and I help as much as I can along with four wonderful siblings who all live nearby. Unfortunately, Dad recently developed pneumonia. We’ve all stepped up a little more to help out and as our family works together, our love and appreciation grows stronger.

Caregiving comes in all sorts of intensity sizes and experiences. Soon after Thanksgiving, our twenty-year-old, outdoor cat became very sick. I love all animals and have had many in my lifetime. Several years ago I started suffering with asthma and my complete dependence on breathing and the adverse impact that animals have on my airways made it necessary for me to love them at a distance. What I wish could be indoors had to be outdoors and as our beloved pets passed on, we haven’t replaced them.

Sammy, February 2017

Sammy is a beautiful Siamese cat with more than nine lives. He has stayed with us longer than either of our two children, who both left home at eighteen years. He isn’t cherished more than our children, but still cherished for being a loyal friend day in and day out for a very long time. When I pulled our van into the garage, which is also Sammy’s apartment and he didn’t come out to greet us, I was worried. I found him in a corner looking distraught and unloved with his matted hair. I grabbed his hairbrush and with the first gentle brush stroke he nearly fell over. I put him in his bed and brought it in the house. He lay motionless for most of the night, which I know because I tried to sleep on the couch by his bed with one eye continually on him. I expected him to die that night.

I don’t know for sure what happened to Sammy, there was no blood or noticeable injury, but I suspected a cat fight. There had been a black cat hanging around, which Mark named Spook Impostor after a similar adored black cat we had thirty-five years ago. This particular night we saw him leaving the yard as we drove in.

The next day Katie helped me give Sammy a bath and we inspected his body for wounds. We did find a couple of puncture wounds by his right shoulder, but they didn’t appear to be bad. Days went by where he only woke up to eat and to use the litter box. I continued daily breathing treatments and shed many tears because I didn’t expect he’d live much longer and it would be the end of the pet era of my life.

Some family and friends suggested I put him down. I had to do that eight years ago with our cat, Figaro and that tied my stomach up in knots along with giving me a bad asthma attack from the vets office and all the animal dander in the air. Since Sammy didn’t seem to be suffering in pain, I wanted him to go naturally.

Nearly four months later, I continue to give Sammy hospice care. He’s had a cyst fill with infection, drain and heal, then come back four times now. He has gained weight and strength, only to lose it again. It’s a roller-coaster ride, but I want to care for him as an expression of my appreciation for his long-time companionship.

Dad with Sammy December 2016

Amazingly, my asthma is doing better. I rarely need breathing treatments now. We did get an air purifier, which I’m sure has helped my allergies, along with hypoallergenic wipes I use on him almost daily. I’m enjoying this time with Sammy and he is the perfect house cat. He’s too old to jump up on furniture or counters. I know his days are numbered and I enjoy every day we have with him.

Aging in any life is hard. As I try to help and support my loved ones through it, my life is enriched. So as much as I enjoy writing, providing for the needs and cares of my family will come first while I try to mend my broken writing habit.

The Wonders of Recovery

Mark’s left hip replacement went well last Tuesday, January 26^th, despite the delay. It didn’t even get started until 5:30 PM due to difficulties with a prior surgery. Around 9:30 PM he was moved into a hospital room groggy, but awake. It made for a very long day and night. His appetite and strength have been very good. The main concern has been the dark, huge bruise from under his armpit to his waistline, not where we expected to see bruising after hip surgery, which makes me wonder what went on in that surgical room.

Wednesday, Mark had a radiation treatment to slow the bone growth in his hips, which is the cause of his joint problems. Thursday, he was released from the hospital to Rocky Mountain Care.

If you’ve experienced rehabilitation, you’re probably familiar with uncertainties like: How long will it take to recover? When will we realize the advantage of surgery? How much pain will have to be endured? These and possibly many more questions, along with the enormous desire to feel better right now are part of the recovering process.

Before Mark was discharged from the hospital with the right hip surgery last July, I visited six rehab centers in our area which were listed with the insurance company. I can’t imagine spending such an important and limited time in a facility without doing research first. With the doctors recommendation, we’d wanted Mark could go to HealthSouth for rehabilitation. They specialize in neurological problems and since Mark has a traumatic brain injury (TBI), I knew they had equipment which Mark would need for rehab. However, the insurance wouldn’t allow it because this rehab was based on a hip surgery and not TBI. Disappointed, yet determined to get Mark the best possible help with therapy, our second choice was Rocky Mountain Care. I was impressed with their homelike atmosphere, clean smell and they had more equipment than the other gyms I visited on the insurance approved list.

Mark’s TBI and physical limitations give him special needs. At home we have a standing frame and a roll-in shower along with a shower/commode chair which he uses daily. The rehab centers on our insurance list didn’t have either and since they’re important for his recovery, therapy plan and general health, I’m willing to bring them from home along with his custom walker. The challenge is finding a room which has space for it all, plus an extended bed for his height and a trapeze, which helps him change position while he’s in bed. Along with these essentials he needs the capability to maneuver his wheelchair in and out of the room. Wow, this list sounds pretty lengthy and must be why we don’t travel anymore.

Suite kitchen and my office area. Door in between goes to bedroom.

Suite living room

Fortunately, Rocky Mountain Care has a couple of rooms which can accommodate Mark’s needs and they’re willing to let us arrange the room to do so. In August and September of 2015, we were lucky enough to get a suite. It was beautifully furnished and definitely the nicest room in the building. The kitchen had a full-size fridge , small microwave and a solid wood dining table with six cushion chairs.

Suite living room with therapy balloons and balls.

Suite bathroom

The living room was furnished with a couch, two comfortable stuffed chairs separated by a table and lamp and a television on top of a beautiful wood stand. A large wood desk was in the back of this room by a glass sliding door which led out to a small patio. The view of the mountains from the living room and patio was spectacular.

The separate bedroom had two twin sized beds, a large dresser, a chest of drawers and a roomy closet. The bathroom had ceramic tiles with a roll-in shower and was perfect for the shower/commode chair or wheelchair. This is unlike any other room Mark’s ever had in a rehab center. We felt spoiled and a little guilty for having it.

Therapists, Brandi and Trish

The room was wonderful, but the biggest advantage to Rocky Mountain was the therapists. They were knowledgeable, caring and worked hard to improved Mark’s abilities. For this reason, they were our first choice this time around. It was nice to have the decision made before surgery and it actually decreased a day in the hospital because we made the arrangements beforehand.

Since Mark has a severe short-term memory problem, he is dependent on me to keep him oriented. Unfamiliar surroundings and routine make him feel unsettled and his memory is worse. He forgets what he’s supposed to be doing and where he is, which can make him agitated or anxious. Since I want him to get the full advantage and have the best experience with rehab, I prefer to stay with him. The suite made it easier, but because it’s a lot more costly than a regular room, we are not in the suite for this round of rehab. It’s been an adjustment and the difference is like being on a cruise verses camping complete with an air-mattress for me. It’s hard for me to go home because I worry he might have a seizure and the nursing or aide staff will not know. I wonder if he’ll be able to find or remember how to use the call button when he needs help and the waiting time for that help also concerns me.

Mark’s bed on the west wall.

Entrance to room

I like to be involved in Mark’s care—not to interfere, but rather assist while he is here. However, it’s awkward to step back since I’ve been taking care of him for so many years. I have to continually remind myself  that what seems so obvious or natural to me isn’t for the professional caregiver who has several patients at one time with all different levels of abilities. I’m realizing every rehab experience is different even with the same patient, therapists and caregiver staff.  But the goal is always the same—to get home stronger and better. We’re confident it will happen with the therapy and supported care we have here.

Mark’s standing frame and my work station. West and south wall.

East wall with my air-mattress standing up, which I lay down for sleeping.

 

 

 

 

 

 

 

We are grateful for all the well wishes and prayers. We feel blessed and amazed at Mark’s ability to heal and adapt to foreign implant objects. This along with all the love and care of others is the most wonderful part of recovery.

Who is the Real Caregiver

“I’m not sure who the caregiver is in this marriage,” Neils said in part 1 of his story, Dancing with Class.

In his part 2, he explains in more detail some of what she does for him. “Her gentle prodding, encouragement and constructive criticism is the gas in my tank. She is the light in the tunnel, the gentle whisper in my ear, my tease, my best friend and motorized mentor who runs over my toes when I get curmudgeonly.”

“Judith has never given up. She always listens to people’s stories and encourages them to fight on.”

I loved Neils closing remark, “My part as a caregiver is insignificant compared to what Judith offers. So, I ask again, who is the real caregiver?”

I  wholeheartly relate and have written about it myself in three other articles.

I’m a full-time caregiver and occasionally I’ve been asked, “Who takes care of you?” Well, I’ll tell you…

Mark is my caregiver. He may not be able to make a meal or do the physical chores of housekeeping or yard work, but he does care about me and gives me support by waiting patiently for me to complete a task before taking care of his needs. He also lifts my spirits with humor, companionship and good times. Being with him is a pleasure. I love his wit and sense of humor. He also gives care through letters, expressing love and appreciation. These letters mean more to me than if he were able to give me flowers.

My parents are my caregivers and have been my whole life. Even though they are well into their eighties, they give me and many others lots of care through meals, visits and sincere interest in what is going on in my life, along with any help or assistance I may need.

My siblings are my caregivers and they too have been my whole life. They are all busy with their own lives and children, but they make time to check up on us. If I ever need anything I always know I can call on any one of them. It’s wonderful to feel the love and support of family!

My children are my caregivers. When they were small it was wonderful to feel their love and admiration. They were sure I could fix anything and no one was stronger. As they grew, experience taught them differently, but their love kept me going. They are my strength and what motivates me to do and be better. Their care is different now they are busy adults and no longer dependent on me, but I still feel their care and love and it means a whole lot to me.

My neighbors and friends are my caregivers. They give with listening ears and a caring heart. They give understanding, support and friendship. They are observant for what they can do to help without me asking for it. I’ve been fortunate to be surrounded by people who are anxious to help. Many times in the winter my snow is shoveled off my walks and I have no idea who did it.

My church provides caregiving. Not only do I find comfort and solace in my church activities, but my association with people there has led to friendships and an organized volunteer program where two people come twice a week to help Mark with his exercises.

So I just have to say, I’m one lucky caregiver. I’m supported by a lot of other caregivers who probably don’t think of themselves as caregivers. But I know they are and I know I couldn’t do my caregiving without them.

If you care and you give, you are a caregiver. If you drive someone to an appointment, prepare a meal, watch children, or go shopping for someone else, you are a caregiver. You may think you’re just doing what anyone else would do—but anyone who helps is a caregiver.

Thank you, Neils, for reminding us of the many acts of service which are considered caregiving.

Who’s your caregiver? Feel free to leave your recognition in the comment square.

My related articles:

What Makes a Caregiver

Six Traits of a Caregiver

No Foolin’, You’re a Caregiver

A Gratitude Attitude

Neils’ story, Dancing with Class reminded me of the benefits in looking back and remembering how smitten we were with our loved ones from the start. Beneath the surface of the caregiving responsibilities, it’s the beacon of love that motivates us in our journey. Taking a step back can rejuvenate our efforts.

I loved Judith’s beautifully written editorial comment, “When our eyes locked I smiled mostly in wonder because I could see love, a physical manifestation, as a light with many colors streaming from his face. I knew that we were together, united and I was safe, as I had never before been safe.”

This expresses perfectly how I hope to make Mark feel—together, united and safe. I imagine that’s the goal of most caregivers. If your loved one isn’t able to communicate their love and appreciation for you, imagine Judith’s wonderfully expressed words. Caregiving is a physical manifestation of our love and hopefully our loved ones see it and feel it too.

We often take our loved ones for granted and don’t appreciate or even realize many of their accomplishments until they either leave us or are severely injured. I related to Neil’s words, “I did not, until that moment, know how well loved and respected she was.”

I love the month of November and the Thanksgiving celebration, which reminds us to be grateful for what we have and the people in our lives. Taking time to reflect on our blessings and the positive traits of our loved ones brings joy and contentment in an otherwise noisy and hectic life.

What resonated the most with me from Neils story was, “The physical issues were not unlike that of a newborn baby. The changes in body functions required frequent attention. Preparing meals, bathing and nurturing were not unfamiliar, but the intensity of it was.”

Our individual lives are chaotic enough, but when another person is relying on us for the most basic needs of daily living, responsibility and pressure are added from sun up to sun down. It’s no wonder exhaustion and doubts creep in concerning our ability to be a good caregiver.

It’s been a tiring year for Mark and I. Tests, surgeries, therapy and too many needed doctor visits, which have nearly depleted all my energy. However, “no matter what’s going on outside of us, there is always something we could be grateful for.” I appreciate the connection and inspiration I get from other caregivers, which fill me up. I’m looking forward to the rest of Neils’ story and a Thanksgiving month, which continually reminds me to take time to count my many blessings.

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.

Hidden Blessings

Everyone can benefit from the encouragement of a promoter and believer in their abilities. I’m grateful for the activists in my life and therefore try to reciprocate by being supportive of others, especially Mark. Being his advocate is a responsibility I take seriously. I’ve witnessed the difference it makes not only in ours life, but in other’s lives as well. It boosts one’s drive to improve and changes their therapy and even the care they receive. Likewise, therapists and professional caregivers buoy up when they know there is a supporter on board. Being an advocate can feel heavy at times and weighs me down, but I see the blessing of improvement which comes from it.

Surgery or illness always brings more caregiving involvement due to the strength loss it brings and for Mark, another issue is his speech. Many people don’t take the time to understand him or they feel awkward when there is miscommunication. Some people are embarrassed to say they couldn’t grasp what he was saying. Mark realizes his speech is impaired and he is not upset by having to repeat himself. He’d rather do that than to be ignored or have someone not comprehend what he’s saying. With uncomfortable and pleading eyes others often look to me to interpret what he just said. Therefore, I feel the need to always be by his side to love, protect and encourage others to understand him. I see the blessing the blessing that comes from communication and when others get to know Mark’s fun personality.

I get lots of advice about what I should or should not do and I have to remind myself it’s generally coming because that person cares about our well-being. Some people think the level of dependency is unhealthy and wrong, while others praise the assistance. Ultimately, I’m just doing what I feel is best, which isn’t necessarily what I prefer to do. As most caregivers know, it isn’t about me. One of the blessings in all this is as I help Mark, my love for him grows and when I come to his aid with the right attitude, it becomes an honor to do so. Not all people can be caregivers, but I’m fortunate to have the health, strength and support which enables me to do so.

This year has brought some unusual difficulties in my caregiving journey. Starting with my large hernia, which was an easy fix with the obstacle being the six-week recovery time and finding someone dependable to care for Mark. Originally, I was in hopes to have my surgery right after Mark had his hip surgery. I thought it made perfect sense for me to recuperate while Mark was in the rehab center. Due to complications, Mark’s hip surgery was postponed and my recovery plan was ruined. Thank heaven for family and friends, especially a daughter who was willing and capable of moving in for the recovery time. It turned out to be a great blessing for all of us, bringing us closer together as we worked through those weeks.

After my recovery, Mark was approved and scheduled to have his surgery. Less than a week before the long-awaited date we were informed he would have to go a larger facility with an ICU due to the risk of complications. It became more frustrating when we were told the surgery date was now uncertain because they weren’t sure when they could fit the four-hour surgery on the bigger hospital’s schedule. Another hurdle was the surgeon wouldn’t start the surgery late in the afternoon. We anxiously waited until the day before surgery to get word whether Mark could be fit in or not. Fortunately the surgery was able to take place on the original scheduled date and having it done at the larger hospital proved to be a blessing. Mark needed one radiation treatment to hinder the excessive bone growth from recurring. This hospital has an oncology center so Mark didn’t have to go far the day after his surgery for the treatment.

I was disappointed when I learned Mark’s insurance plan wouldn’t allow him to go to the rehab center of our choice. I appealed to the insurance company and the doctor wrote a recommendation for an acute rehab center. There was no persuading the insurance company. Saddened by their decision, I searched for an alternative. I learned that not all rehab centers allow a family member to stay overnight with their loved one. I understood their concerns, but for our situation, I couldn’t abide by the rule. Although Rocky Mountain Care discourages overnight stays, they do allow it, so here we are. Another benefit of this place was that Mark had rehab here two years ago after three hospitalizations for blood clots. The admitting personnel and rehab coordinator were familiar with us. It has proven to be another blessing that we are here. We love the therapists. They work hard to help Mark gain improvement. We appreciate their knowledge and the equipment available. The in-house doctor, nurses and CNA’s are helpful. It may not have been my first choice, but I believe he is getting the best care possible.

Some days it feels like I’ve had more than my share of things not turning out the way I’ve planned, hoped for and worked diligently towards. However, when I look back on the end result, I realize it worked out for the best. I’m feeling fortunate as I recall these hidden blessings and realize there are many who support us. I’m grateful for each one of you and especially for our greatest advocator. He pleads for us and knows what is best.

I Need Thee Every Hour

Right hip replacement with extended rod for added stability.

Left arthritic hip with calcium buildup preventing free movement.

It’s been a hard couple of weeks.  We expected the healing process from a total hip replacement would be difficult, however, the distinct difference between expecting and knowing is living it day by day, which makes the actual experience a reality.

As I was searching for the perfect thought to go along with my last story and tip concerning true grit, I found a quote from John Wayne. “Life is tough, but it’s tougher when you’re stupid.” I chuckled when I read it, but it haunted me through our “tough” week.  I couldn’t stop wondering if we took a ridiculous chance or made a senseless choice in choosing major surgery for Mark.

We took months to decide. Vacillating back and forth nearly drove me crazy. When I was reluctant, Mark was assured and visa-versa. The stiffness and painful ache was bound to get worse over time and with the results of his bone density test, we realized if he was going to have the surgery we needed to do it now. After much prayer and discussions about risks and concerns, the surgery felt like the best solution for helping Mark to sit comfortably and move better as well as making it easier for me to transfer him in and out of his wheelchair. We were hoping this would bring an improved quality of life for both of us. I’ve wondered if the uncertainty was a sign we shouldn’t go through with the surgery, yet we couldn’t let go of the a hope for improvement.

Since the day of the car accident, I’ve felt responsible for Mark’s care. It isn’t because I want to be in control of his life, but while he was in a coma, I was forced into that position.  It overwhelms me to be in charge of another person well-being and I guess I could have shirked from the responsibility, but my love for him wouldn’t allow me to do so.  I hated the circumstances and would have loved to escape from having to make many decisions—however, obligation felt like the right choice.

In a rehab center, it’s easy to notice another person who’s had the same surgery near or on the same date who’s healing and progressing at a much faster pace.  Some of the patients here who came about the same time we did have already gone home or are getting ready to do so in the next week. It isn’t that they’ve worked harder or more diligently, but they had a physical advantage to start with.

I’ve wondered if we made the right choice or if we just made our life harder. Sure, Mark’s gained movement, but he’s lost strength and so far the improved movement doesn’t make up for the lack of strength, which makes transfers even harder than before. He’s far from ready to come home and that’s discouraging. We’re praying he’ll turn a corner soon and his recovery will speed up, but in the meantime, I’m trying to be patient and positive.

Every Sunday they have a short church service at the rehab center for anyone who’d like to participate. Today the opening hymn was, I Need Thee Every Hour. I fought the tears as the words seemed especially significant and reminded me how much I needed God to calm the raging storms in my life. Noticing a few others who also had tears, reminded me that our anguish can either humble us or make us bitter.

Looking around the room, I saw others with more serious problems than my own. Realizing my fortune gave me strength and desire to lighten their loads. It amazes me what some of these people endure with a smile. They have taught me I can focus on what’s right or what’s wrong in my life. It’s my choice.

Life is hard, and making stupid choices makes it harder. Sometimes I’m right and other times I’m wrong, but I’m always trying to do what’s best. For me life is easier and I have more confidence when I rely on the Lord.

Tips For a Good Parent

This is a great reminder for every mother and father who wants to improve on their parenting skills. When I read this, I thought of Susan Ferguson, who is my son-in-law’s mother. Her life influenced so many people. She was a compassionate, professional caregiver as a nurse for many years. I’ve heard about the many kind deeds she did while nursing. Just as important, if not more, I know she was an amazing mother and wife by the way her husband and children revere her. I only met her twice, but I admire her for the positive influence she had on her children, particularly my son-in-law, Eldin. I don’t think she insisted on him eating vegetables, but I’ll bet she did all the other ABCs of a good mom, especially making good memories.

Usually our children live beyond us. Hopefully, they will appreciate and honor us always as a caring parent, just as Susan’s children do her.

 

It’s Not About Me

It’s my pleasure to introduce you to my daughter’s father-in-law, Chuck Ferguson. Chuck was a caregiver to his wife, Susan, until she passed away from cancer in May of 2003. He cared for her in their home in Richfield, Utah. When she died, they had four grown children and five grandchildren.

Written by Chuck Ferguson

It wasn’t supposed to be that way. Of course, I suppose it never is. When Susan was diagnosed with cancer, it seemed like the end of the world. It was a devastating blow.

Susan Ferguson, 1972

It also was a reversal of roles. As a nurse, Susan had been a caregiver since before we were married. She had helped countless patients who were suffering through hard times with a gentle touch and a heart of gold. Now it was suddenly I who was cast into the role of caregiver. It didn’t come easily.

This past July 11^th marked 45 years since Susan and I were married in the Oakland LDS Temple. Marriage to Susan was the best thing ever to happen to me. She was the best part of me, and her spirit still is.

It was just before our 29^th anniversary that Susan was diagnosed with breast cancer. It came as a shock to our entire family. Susan had regular mammograms every year, always coming up negative. Nevertheless, she had a feeling that something was wrong and decided to have a biopsy. The results showed her at stage 3 breast cancer. Apparently, calcification had masked the cancerous growth.

Despite the bad news, we tried to maintain our normal routines while sandwiching in Susan’s treatments. We tried to keep a positive outlook, pinning our hopes on an experimental stem cell program that seemed promising.

Susan first received four regular courses of chemotherapy. The program then required Susan to be in the hospital for about a month, then another couple of weeks in offsite housing. Between the collecting of stem cells, and the procedure of intense “near death” chemotherapy followed by reintroducing the collected stem cells for recovery, the whole experience could be described as nothing less than torture. After all that, surely the cancer would be defeated.

And so for several months after the treatments we carried on a “normal” life. However, within myself there was a constant undefined feeling of uncertainty, near inner chaos. Looking back, I can see that it affected me in everything I did. I think I knew that, as much as I hoped otherwise, I had a certain sense of inevitable doom. And with it there was a selfish feeling of, “why me?”

Not long afterwards, Susan started having an ache in her hip that would not go away. X-rays showed a fractured hip caused by bone cancer. An oncologist made it clear that the cancer had spread and that Susan was terminal.

It took me a while to overcome the “poor me” syndrome. But finally I began to realize and internalize what became my mantra – “It’s not about me.” It was difficult to be in the ironic position of caregiver for the woman I considered the best caregiver I had ever known. Trying to live up to the standards that she had established as a caregiver were often frustrating. I was required to do many things for which I had very limited training. Fortunately I had the best possible teacher, Susan.

Ferguson Family, 2002

The next three-and-a-half years were the best years of our marriage as we made the most of the time we had left together. We traveled the world and enjoyed special times with our children and grandchildren. It wasn’t always easy for Susan. Sometimes she was sick, sometimes confined to a wheelchair, often tired, or in pain from the medications and treatments. I did my best to meet Susan’s needs, whatever they might be. Frustrations became challenges, and challenges became opportunities to serve the woman that I loved so dearly.

Being a caregiver for Susan demanded a lot—physically, mentally and emotionally. It demanded more than I ever imagined I could endure. But it was easier whenever I looked into my Susan’s eyes and reminded myself, “It’s not about me.”

Thank you Chuck for sharing your story and for reminding us that our challenges are opportunities to serve the people we love. I’m grateful for you and Susan and the four wonderful children you raised together, especially Eldin, who happens to be my favorite son-in-law. When Katie Mae and Eldin were engaged, I knew it was a good match. They both grew up with a parent giving care to another. I love your reminder that caregiving, marriage and life in general, is not just about me.

Chuck remarried the following year and lives with his wife, Suzie, and their daughter, Katie, in the Salt Lake Valley. I appreciate him sharing this heart-felt message with us!