Monthly Archives: March 2014

Greg and Laura Nordfelt’s Story

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Laura & Greg

Greg and Laura Nordfelt                The day before the accident.

On August 15, 2011, our friend Jimmy, my husband Greg and I were riding our Harley motorcycles along a scenic section of highway 95, about 60 miles south of Coeur d’Alene, Idaho. Greg was feeling sick, from food poisoning contracted at a diner the night before, but he insisted that we continue on with our planned trip. I was on my own Harley behind Greg and saw him pass out and crash into a bed of lava rocks at the side of the road. I anxiously ran to him and gave first aid until the Emergency Medical Technicians (EMT) came. I’ve had EMT training and my skills took over until the professionals arrived. Greg was transferred by life flight to the nearest hospital in Coeur d’Alene.

Even though Greg was wearing a helmet he suffered a severe brain injury, a crushed leg and had deep open wounds from the impact. We spent 11 days at the hospital in Coeur d’Alene until he was able to be flown to the Neuro Rehab at Intermountain Medical Center (IMC) in Murray, Utah, which was closer to home and family. He was there for a couple weeks before coming home. He worked extremely hard to get back to work as a banker full-time over the next 5 months (starting initially at only 2 hours a week).

The left side of Greg’s brain was damaged beyond repair and the right side had to learn to take over the tasks of reading, writing, talking, walking, banking etc. This was difficult for both of us because it effected his personality and how we related to each other. Greg read a book called “My Stroke of Insight” by Jill Taylor, which explains in detail a neurologist’s loss of her left side of the brain function during a stroke. She had to cope with a complete driven right brain for all her activities.  This book had a tremendous impact on both of us.

Laura & Greg kissingOur marriage has been very different since the accident and not what I was prepared for. I’ve had to cope with his strange changes and sometimes I say to him, “Who are you and what have you done with my husband?” I wouldn’t say I’m a patient person and our six children can probably attest to that, but I have been extremely fortunate to be able to take one day at a time.  After all, isn’t that what marriage is all about?

Greg and I were very “fly by the seat of our pants” kind of people . . . always ready for the next adventure, whether it was motorcycles, riding our bicycles down hills at 60 mph, hiking where we maybe shouldn’t be hiking, jumping off cliffs, extreme diving, etc.  NOT so much now.  We are discovering new adventures in less dangerous ways.

I was not prepared to be a caregiver for my husband. My EMT training seemed to help some, but as a mother, being a caregiver came naturally. However, the thought of taking care of an adult TBI survivor long term was extremely hard, especially when there was no one taking care of me.  Brain injury patients are constantly surrounded by doctors and therapists. They are initially monitored and recorded and any progress is celebrated.  As a caregiver, I was left completely on my own to figure out my new life and how to make it work. I felt like I was set up to fail! There were no guidelines, no manuals and no pats on my back.

I was also dealing with Post Traumatic Stress Disorder (PTSD) from the accident. I tried personal therapy a couple of times, but couldn’t seem to find the right therapist for me.  I looked for caregiver groups, but none were readily available.  Within a year after Greg’s accident I asked to join the board of directors at the Brain Injury Alliance of Utah (BIAU).  It was my attempt at giving back to the TBI community. I was motivated specifically to start a “Caregivers Support Group” that was not available to me during Greg’s recovery. It was extremely important to me to help other caregivers that were lost like me. I also felt it would help my own healing while supporting the daily living issues of other caregivers. I felt that working together in groups would be therapeutic and healing for all of us.

Now we have our very own Caregiver Group monthly, at Intermountain Medical Center in Murray, Utah. We meet in conjunction with the Survivor Group on the third Thursday, at 7:00pm. Together we can learn how to cope, and find helpful resources. A big shout out of thanks goes to Kim Kirkham at TOSH for all her help launching this group and for her continued support. Greg has also been supportive and has helped me find a way to support TBI caregivers.

Monthly updates concerning the caregiver support group can be found on our facebook page: https://www.facebook.com/pages/Caring-for-the-TBI-Caregiver/705869382781093  Please press the “Like” button to get updates.

You can listen to Greg and Laura recount their experience and tell their amazing story.

 

Children’s Learning Center

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Child's book case

 

 

 

 

 

 

 

After I posted the article Tuesday “The Benefit of Learning Centers” I saw this cute reading corner for a child. I thought it was a great idea for creating a learning area in for a child’s room. You just hang a curved shower rod in the corner with some shelves, pillows, and a rug. If I had little ones at my house I would definitely want to create something like this.

For more ideas see the website:  http://www.growwhereyoureplantedpreschool.com/

1987, Katie and Christopher sitting on the bed their Dad built.

1986, Katie and Christopher sitting on the bed their Dad built.

 

This got me thinking about my children’s rooms and the neat things Mark built for them when they were small. So I headed for my picture albums and boxes and found these gems.

K & C Bed

1988, Mark building a bed for Katie's 4th birthday. The bunk bed sat on top of a playhouse.

1988, Mark building a bed for Katie’s 4th birthday. The bunk bed sat on top of a playhouse.

 

 

 

 

 

Two sturdy shelves on each end of the bunk bed. Twenty-seven years later and now I’m using those shelves in the garage.

The books don’t show here, but he did have books on the other side.

 

 

I searched for a finished picture of Katie’s bed but couldn’t find one. It’s unfortunate because it turned out so cute. The walls were white and the bed railing and frames around the windows and door were a bright yellow, her favorite color.  A child’s kitchen set was inside the playhouse along with a book shelf.

Yes, those are wooden guns in the top left corner, they were built by my dad. Mark built the beds in my parent’s garage or workshop since there rarely was room for the vehicles.

Playset

 

In my search I found this picture of the fort , slide and swing-set Mark built for the kids. The slide was built extra wide so two kids could race down side-by-side or use an inner-tube in the winter. Mark built the slide out of plastic laminate. The kids loved it!

Playset in winter

 

 

Oh, how I love thinking back on those younger years with our children and their friends.

 

 

 

 

 

The Benefit of Learning Centers

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HCI Cancer Learning Center

HCI Learning Center

In 1991, when Mark was at Western Rehab after our automobile accident, the internet was unheard of so went to their Resource Center. This facility mostly cared for stroke and traumatic brain injury (TBI) patients so their Resource Center was full of material on those two topics. I wanted information that would help prepare me for our circumstances. I wanted to learn how I could be helpful and supportive for Mark, so I checked out books concerning TBI.

While I was in the Resource Center, I noticed a video (yes, this is before the days of DVD’s) on how to transfer a patient to the wheel chair. It felt like we were always waiting for two aides to be available to transfer Mark, so I checked it out and watched it that night. The next morning when I went back to Western Rehab I told the physical therapist I’d like to try to transfer Mark. Since I had just recovered from a broken collarbone (from our accident) she questioned my strength. I told her I thought I could do it and told her I’d watched the step by step video. She was willing to work with me and it went well. The video gave me the confidence I needed to ask if I could start transferring him. The disadvantage of my learning to do this was Mark then preferred me to do all transfer. So if the aides wanted to transfer him, he would ask them to wait until I got there.

HCI BooksKnowledge gives you power and the unknown becomes less fearful. When my daughter, Katie, was at the Huntsman Cancer Institute, I saw their amazing Learning Center. You can check out books, audiobooks, CDs, videos and DVDs for free. You can get answers to questions about cancer topics and help prepare for your next medical visit.  You can learn about types of cancer, treatments and side effects, alternative treatments, coping and caregiving. The free library is beautiful and opened to everyone. You can email them at patient.education@hci.utah.edu or call toll free 1-888-424-2100.

I called the Learning Center and told them about my blog and that I was interested in information about caregiving. The librarian was informative and helpful. She emailed the following links:

Helpful Websites

Caregiving Materials

Communication

Holidays

Advanced Cancer/End of Life

You can search other topics by using their online library catalog at www.huntsmancancer.org/clc  (Select “Search Our Library” on the left-hand side).

Related Articles:

Feeling Lucky

Let Go of the Things You Can’t Control

Jon M. Huntsman

 

Jon M. Huntsman’s Story

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Information found on the Huntsman Cancer Institution Website:

Jon M. HuntsmanThe story is all too common: a man—a husband, brother, father, grandfather, and friend—is diagnosed with cancer. He seeks treatment, and doctors do what they can within their resources to save his life. He looks to his loved ones for support and encouragement. His cancer is treated successfully and he waits, hoping it will not recur.

While the narrative is common, it happened twice to an uncommon man: Jon M. Huntsman. Mr. Huntsman is chairman and founder of Huntsman Corporation, a multinational chemical manufacturing and marketing business with world headquarters in Salt Lake City, Utah. Through his cancer diagnosis, treatment, and recovery—which took place at top facilities across the United States—he felt a void in cancer care. “It felt impersonal, and for a disease in which treatment is often ongoing, it took place in environments that were cold and medical, places less conducive to healing.”

During his journey to recovery, Jon M. Huntsman and his wife, Karen, committed themselves to advancing cancer research and care for others, including the atmosphere in which that care takes place.

In 1995, the Huntsman family pledged $100 million to construct a state-of-the-art cancer center in Salt Lake City. Shortly thereafter, the Huntsman’s pledged another $125 million. Almost two decades later, Huntsman Cancer Institute and Hospital is world-renowned. The individualized care patients receive from multidisciplinary teams of doctors, nurses, radiation therapists, and pharmacist’s helps heal their bodies. Social workers and support groups help patients keep their spirits strong, and a wellness program helps them maintain fitness and good health with diet and exercise appropriate to their condition during treatment and beyond.

Huntsman Cancer Institute’s mission is to understand cancer from its beginnings, to use that knowledge in the creation and improvement of cancer treatments, to relieve the suffering of cancer patients, and to provide education about cancer risk, prevention, and care.

*****************

It seems as though cancer touches every life, if not personally, then through a family member or friend. Nobody wants to hear the “C-word” diagnosis, and when I first heard my daughter Katie had it, I was filled with fear. I realize thyroid cancer is less serious than many other kinds of cancer, but it’s still alarming especially when it’s spread to lymph nodes. It’s comforting to know Katie is getting treatment at one of the best facilities.

I’m so impressed with the doctors, nurses and the beauty of this facility. I’m grateful for Mr. Huntsman. His generosity and passion for finding a cure for cancer made me curious about what drives a billionaire to donate so much of his wealth to this cause. My research only made my admiration grow for this man. His donations of more than $1.2 billion made him dropped from the “Forbes 400” in 2010. The world has 1,200 billionaires and he is one of only 19 to have donated more than $1 billion. What a remarkable man!

While researching I came across this six minute interview,  published on Nov 30, 2012. Jon Huntsman Sr. talks about his childhood growing up broke in Blackfoot, Idaho and how his goal now is to find a cure for cancer and die broke doing it.

Other cancer survivor stories can be found on the Huntsman Cancer Institute website, “Survivor Stories”, along with lots of other helpful information on cancer.

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Let Go of the Things You Can’t Control

Feeling Lucky

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Wheelchair Ordering Tips

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New Wheelchair-front Buying a bicycle, car, truck, or any other form of transportation is exciting. The ability to get you where you want to go is often taken for granted until it breaks down or becomes hard to use. For most transportation vehicles you’re free to shop around, try out different makes and models, and buy the one that fits your needs.  However, buying a new wheelchair is unfortunately different. If you’ve never bought a custom wheelchair or needed one to get you everywhere you want to go, you’re probably wondering, what’s the big deal! You go into a Medical Equipment Store and try out a few different wheelchairs to see which one fits your needs the best, then order the perfect color and in a day or two have your new wheelchair.

If I could have it my way, it would be done in those three easy steps. But here’s the real deal:

1)      Get a prescription or order from your doctor to start the process.

2)      Meet with a Wheelchair Specialist to discuss the necessary parts for your special needs for comfort and mobility. Unfortunately, there’s no guarantee these parts will work because you’ve never tried them before or even physically seen them. Sometimes it’s a picture from a catalog or the internet.

3)      Meet with an Occupational Therapist (O.T.) or Physical Therapist (P.T.) to assess your needs and discuss the recommendations from the Wheelchair Specialist. The therapist needs to write a “Letter of Medical Necessity” for the Medical Equipment Store to submit to the Insurance Company.

4)      Get another doctor’s appointment to review the recommendation from the Wheelchair Specialist and O.T. or P.T and get a “Letter of Medical Necessity” for the Medical Equipment Store to submit to the Insurance Company.

5)      Make sure the Medical Equipment Store gets both “Letters of Medical Necessity” and submits it to the Insurance Company for authorization.

6)      Wait for the Insurance Company to send confirmation of coverage. Once you’ve received the authorization notice, make sure the Medical Equipment Store orders the parts which consist of a frame, seat, back, leg rests and arm rests.

7)      When all the parts arrive from various manufactures, the Medical Equipment Store assembles it. Once the parts are ordered and the wheelchair is assembled, you finally get to try it. If it doesn’t work, you get to start the order process again for a different part.

 

New WheelchairWhen you are confined to a wheelchair fourteen to sixteen hours every day it needs to be comfortable and well fitted for your special needs. Unfortunately, because of the customization they are expensive and because of the many hours per day they are used, they wear out. So about every five years you have to go through this process. The expense is outrageous, several thousand dollars, and you don’t know the total cost, or your deductible portion until the wheelchair is delivered. The drawn-out process and frustration of orchestrating each step is tiring. You need to supervise every step or they don’t get carried out. If too much time passes the Insurance Company can back out and you have to start the process all over again.

Mark Recline wheelchair

Mark enjoying his new reclining wheelchair

Personally, we started this process on October 16, 2013 with the first doctor’s appointment.  Yesterday, March 17, 2014 (our lucky day) Mark finally got his new wheelchair. Because it is getting harder for me to transfer Mark in and out of the wheelchair, it was recommended we get one that reclines for change of position. It’s very nice, but because it reclines the wheels are set back on the frame, making it harder for Mark to propel. Also the frame is longer than the previous chair, making it harder to turn corners and get into our van that’s customized for a wheelchair. It also sits a little higher making in impossible to get under the table and desk. We’re giving it some time to see if we can make some adjustments, but at this point we are unsure if this wheelchair was the best option for Mark. Unfortunately, this isn’t something you can resell and buy another.

My advice: start this process before your wheelchair needs replacing. If you wait until you need a new one, you’ve waited way too long.

Rainbows

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Rainbows

Music has a way of tugging at the heart strings and “Somewhere Over the Rainbow” has an especially strong pull on mine.

My love of music unfortunately was not translated into any form of talent. I did take piano lessons in my youth but had a hard time learning how to read music. However, I’ve been surrounded by musicians my whole life so I do appreciate and enjoy listening to it. Each one of my sibling’s can play at least two instruments and my mother along with both of my children play the piano. My son, Christopher, loves to perform and can play several instruments, his favorite being the guitar. He not only reads music, but writes his own and lyrics too. So any talent I should have had, he makes up for.

In the year 1991 when Mark was at Western Rehab there was a large gathering room where family and friends could gather to visit. In the corner of this room was a piano. My oldest brother, Mick, with his family would often come to visit on Sunday evenings and play the piano. Other patients liked to gathered there with us to enjoy his playing and the encouragement his music brought. Once his talent was known, patients or staff asked him to play whenever he would come to visit.This entertainment was always a welcomed distraction from the pain and hard work of rehabilitation and the loneliness of not being home. 

My sister, Rosanne and her family put together a few musical programs to perform for us and all other patients who wanted to come to the gathering room. Usually a good crowd was there to be lifted up by the sounds of my brother-in-law, Klint, at the piano, Rosanne, on the cello or flute and their five children age’s fourteen to five, all on violins. All in attendance enjoyed the healing power of music.

Never will I forget one very special song my sister played at the end of one of their programs on her flute, “Somewhere Over the Rainbow”. She came up close to where Mark and I were sitting. With Mark, just out of a coma, I felt the spirit of the words as her notes touch my soul.

Somewhere over the rainbow
Way up high
There’s a land I heard of once in a lullaby

Somewhere over the rainbow
Skies are blue
And the dreams that you dare to dream
Really do come true

Someday I’ll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemon drops
Away above the chimney tops
That’s where you’ll find me

Somewhere over the rainbow
Bluebirds fly
Birds fly over the rainbow
Why then oh why can’t I?

If happy little bluebirds fly
Beyond the rainbow
Why oh why can’t I?

Whenever I hear that song, tears fill my eyes as I’m taken back to that touching moment when music communicated love, hope and encouragement. It reminds me of a very worrisome, dark time, brightened by music and our family’s love. A remarkable moment which made me realize after every bad storm there is the promise of a rainbow.

Enjoy my sister’s version of “Somewhere Over the Rainbow” recorded near our Family’s Hill Haven in Parley’s Canyon.

Let Go of the Things You Can’t Control

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Let Go1

A few weeks ago I got a call from my daughter, Katie. “Hi Mom, Eldin and I are in the neighborhood. Can we stop by for a few minutes?”

“Sure, what’s up?”

“Just thought we’d return the book we borrowed.”

“Sounds good. I’ll look forward to seeing you soon.”

When they arrived she handed me the book and said they had some bad news and some good news. This news was the real reason for their visit.

I suggested we all sit down. Katie hesitated, then took a deep breath and looked at Eldin. He softly said, “You can do it.” She took another deep breath and announced they had just come from the doctor’s office and she had thyroid cancer.

In total shock a hundred thoughts darted quickly in my head: How could this happen to my daughter? How could I have had no warning? Why didn’t she tell me she wasn’t well? Am I so caught up in Mark’s health issues I don’t notice my own child’s health? Was she afraid to tell me because of Mark’s health? I want to be the kind of mother my kids can come to and count on. I thought we shared important things. We used to be close or at least in my mind. What have I done for her to keep such important information from me? Why wasn’t I there for her during the testing? The horrible thoughts kept darting in my brain and in my heart. I tried to fight the tears, I wanted to be strong for her, but they welled up anyway.

Katie said, “The good news is the doctor said if you’re going to have cancer, this is the best kind of cancer to have. It has a 95% cure rate.”

I thought of my dear friend, Michelle, who had part of her thyroid removed and I knew she lived a healthy life. But the tears kept coming, not just because of the diagnosis, but also because my daughter hadn’t turned to me for comfort or strength. I felt like a failure as a mother.

Katie said the testing just started a couple of weeks prior just as a precaution. She really didn’t think anything would become of it. She hadn’t been feeling pain. The only symptom she had been experiencing was fatigue. She was surprised when her doctor discovered the lumps in her neck.

I’m realizing once you’re a mother, you are always a mother. The feeling of wanting to make it all better never goes away. For an unreasonable moment I resented my son-in-law for taking away my daughter at the young age of nineteen. I wasn’t ready to let her go then and even now that she’s been married nearly eleven years—I still struggle with letting her go.

As my children age, I become less needed. Their lives are busy and filled with opportunity. I’ve heard my own mother warn about this cycle and know she struggled with it too, so at least I know I’m not alone.

When our children are young it’s physically draining meeting all their needs. As they get older and don’t need you it becomes emotionally hard. Letting go is a difficult thing to do and it starts when they become teenagers, struggling for independence. It wasn’t easy then and now that they’ve gained their independence, it’s still hard at times. My guess is it will never be easy.

Letting go

When you love someone it’s just hard to let go. I raised my children to be independent and productive adults, and they learned it well. I should be grateful. I am proud of them, and as hard as it is to let go, it’s rewarding to watch them fly independently!

 

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Feeling Lucky

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HCI

Nestled in the beautiful Wasatch Mountains just above the University of Utah Hospital is the Huntsman Cancer Institute (HCI). The front of the hospital is nearly all windows that overlook the Salt Lake Valley. Not only is this a beautiful hospital with breathtaking views, it has great reviews. I add mine to the thousands that are already out there.

HCI, Front Entrance

I had never been to HCI until this week. Our daughter Katie was recently diagnosed with thyroid cancer and chose to have her surgery at HCI on March 5, 2014. As we drove up to the hospital into the circular valet parking area I was immediately impressed with the appearance of the facility. It was classy, warm and inviting. It did not resemble any hospital I’d ever seen and I believe I’ve seen every hospital in the Salt Lake County. As Mark and I entered into the main lobby area it felt spacious and opened. There was a gorgeous seating area, with nice comfortable furniture, an information desk on one side and a grand piano on the other. A beautiful staircase of cherry wood and steel took you up to the next floor or you could choose to take the elevators which framed with marble. I thought I had walked it to the finest hotel in Utah.

HCI, 5th floorKatie’s surgery was on the third floor. The waiting room had a beautiful view of the valley as did all six floors. The waiting room was decorated with several shamrocks hanging from the ceiling and placed on the walls by the check-in area. The shamrocks added a lucky charm to the room and I said, Katie, don’t you feel lucky to be treated in this place?” She chuckled at my question.

As Katie was checking in, I noticed a plaque “Cancer Is So Limited—It cannot destroy love.  It cannot shatter hope.  It cannot corrode faith. It cannot destroy people. It cannot kill friendship. It cannot suppress memories. It cannot silence courage. It cannot invade the soul. It cannot steal eternal life. It cannot conquer the spirit.”

Feeling Lucky2I showed it to Katie, inspired by the sentiment that cancer cannot take away what’s most important. As we sat for a few minutes waiting to be called into the surgical waiting room, I decided it was the perfect time to give her my gift. She laughed as she unwrapped the gift and stated it was the coolest T-shirt she’d ever seen.  Back in the surgical waiting room I laid the T-shirt over her blankets so the good luck charm would influence her and the doctors. She was a good sport about it and it made a fun conversation piece for the long wait.

The surgery went well, however the cancer had spread to at least two lymph nodes, so those were removed with several others that surrounded the two infested lymph nodes. It was almost a three hour surgery with another hour in recovery before she was wheeled into her room.

HCI, Patient BedHCI, TV ConsoleWhat a welcome sight she was for Eldin, Mark and I. It seemed like we had waited forever. Her color was good along with her spirits. She was relieved as we all were that the surgery was behind her now.  The nurses were as wonderful as the doctors. They welcomed her to Hotel Huntsman with narcotics and took very good care of her. The following day she was released to come home.

HCI, GuestHCI, Bath

The rooms were spacious and comfortable. Check out the beautiful molding in the bathroom. There is also molding around the ceiling. What an amazing place to treat a dreadful disease. Thank you, thank you Jon Huntsman Sr. for a beautiful facility and a caring staff. You are one of my heroes for doing an awesome job. I’m feeling lucky for my daughters successful surgery!

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