One of the benefits of my caregiving journey is the people I meet and have the privilege to rub shoulders with. I met Greg and Laura Nordfelt at the 2013 Annual Brain Injury Conference. Immediately, our hearts connected when they shared their story with me. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the fight to return to a familiar way of life are very similar. They agreed to let me share their story on Uniting Caregivers in March of 2014, Greg andLaura Nordfelt’s Story. We have kept in touch over the past two years and I’ve enjoyed my friendship with them. Watching this couple grow and seeing the amazing outreach they both give to others inspires me. Thursday, September 17, 2015, Greg shared more of his story with Channel 4 News. With their permission, I share what Laura writes and the Channel 4 News interview.
“I am so proud of Greg Nordfelt and this interview on Thursday with Channel 4 news. Most of the recording ended up on the cutting room floor, but what showed was a glimpse of what he has been through in the last 4 years with his recovery process. More than all of this is the amazing job he has done volunteering with the TBI patients since then at TOSH, who meet twice a week working through their aphasia issues. On top of all this, three weeks ago he started volunteering at Intermountain Medical Center (IMC) on the very floor where he learned to get his life back with Physical, Occupational and Speech Therapy, giving hope to TBI patients and their caregivers. This is my sweet, giving and incredibly loving husband. xoxoxo .”
I appreciate the inspiration Greg and Laura give to everyone who knows them. I am grateful for the awareness of TBI they spread by sharing their story. Together they are a powerhouse and are making a positive difference in our community. I can’t wait to see what they accomplish next. They are wonderful and I’m blessed by their friendship. Ride on Greg and Laura!
You may not be a caregiver all day long, but 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. Some caregivers provide full-time care. Others just listen. Whatever you do and say matters!
I’m a full-time caregiver and 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 this job without them.
If you’ve ever done any act of service, you are a caregiver and you know along with the work there is joy in doing something for someone else. No foolin’, you’re a caregiver!
Over the past seventeen years, Mark’s exercise program has changed a bit as he has improved or his needs have changed. On Monday and Wednesday nights, when the volunteers come to help Mark, we start by getting him down on carpeted floor. This takes two people, one on each side.
Exercise tools: a 2′ x 4’sliding board, 2 barbell weights, 12 plastic cups, 2 wash cloths, folding chair, doorway bar and walker.
Together we do the following exercises:
1. BRIDGING – While lying on his back with knees bent, Mark pushes his hips up as far as he can, holding a second and then lowers his hips back down. A person needs to hold Mark’s feet down so they don’t slide out and steady his legs, keeping his knees together. 25-50 times
2a. BUTTERFLIES – With arms straight out against the floor at shoulder height, with a weight in each hand, Mark lifts his arms straight up over the middle of his face. While Mark does this, a person can do the leg press (2b). 30 butterflies per each leg press
2b. LEG PRESS – Since Mark is in a wheelchair all day long it’s hard for him to straighten out his legs. Mark can do the butterfly exercise (2a) while a person is pressing the leg down to the floor with one hand above the knee and the other hand below the knee. Hold each leg down for 30 seconds
3. HIP STRETCH – With knees bent and feet together, stretch the knees apart. Hold 30 seconds – 3 times
***Take Mark’s shoes off and use the sliding board for exercises 4 and 5***
4. KNEE BENDS – With Mark lying on his back with the sliding board under his legs and feet, a person assists Mark in sliding his foot towards his buttocks. Mark can do this exercise well with the right leg, but the left leg needs a lot of assistance. Sometimes another person has to move it a few times before Mark can do it on his own. Sometimes the brain does not kick in at all and on those times the helper needs to bend the left knee upwards and let Mark try to hold it there, without letting in slide down the board. 10 knee bends per leg
5. HIP FLEX & ABDUCT – With Mark lying on his back with the sliding board under both legs, slide 1 leg straight out at a time in a snow angel movement. His left leg will need assistance. Each side10 times
***Put Mark’s shoes back on***
6. CRUNCHES – This exercise uses 12 plastic cups. For this exercise a person sitting on each side of Mark will help stabilize his bent knees. One holds the stacked cups at Mark’s shoulder height about two feet from his shoulder. Mark reaches across his body with his right hand to get one cup that is held on his left side. Once he has the cup, he puts it in his left hand and reaches across his body to set the cup on his right side. This exercise rotates the upper body while the lower body is stabilized. He will move the stack of cups to one side and then back again.
***Mark rolls over on his stomach with a towel placed under his face for comfort***
7. BACKWARD SHOULDER STRETCH – With arms down by his side, Mark lifts his arms upward together and then back down. 25 times
8. OUTWARD SHOULDER STRETCH – Both arms straight out at shoulder height. Hold stretch for at least 60-90 seconds
9. SUPERMAN STRETCH – Both arms straight up over his head like superman. Hold stretch for at least 60 seconds
10. QUAD STRETCH – While lying on his stomach, Mark bends his knee backwards trying to kick his buttocks. Each side15 times
11. PUSH UPS – While on his stomach and hands under his shoulders, Mark should push up. He has a hard time with this exercise, but it’s good for him to try. 15 times
12. BALANCE ON ALL FOURS – While one person is helping Mark push back with his arms, another will help bend Mark’s knees forward and lift him up so that he is balancing on his knees and hands. This is necessary because Mark is so ridged. Hold for 60 seconds
Mark doing tall kneeling exercise with Lee & Kathy Sadler
13. BALANCING – Use the back side of a folding chair for this exercise. While Mark is on his hands and knees he shifts his weight to climb the back parts of the folding chair, similar to climbing a ladder with his hands. 3-5 times
14. TALL KNEELING – Again, with the use of the back side of the folding chair, Mark wil climb up until he is on his knees. Move the chair and have Mark balance on his knees. A person needs to be on each side of Mark in case he loses his balance. Balance at least 60 seconds without holding onto the chair.
15. STANDING – From the tall kneeling position, with a person on each side they will assist Mark in standing up.
16. BARSTANDING – We have a bar that runs across a doorway between braces. We also have a foot brace for Mark’s feet while he does this exercise. Mark stands, holding onto the bar for at least 60 seconds. It takes another person to assist him up to the bar and give verbal cues in keeping his balance with upright posture and straight knees.
17. WALKING WITH A WALKER – Mark can walk with some verbal cues and support. One person should follow behind him with the wheelchair so he can rest when needed. This is done around the house or outside when weather permits. Usually takes 5 to 10 minutes and is Mark’s goal for the night.
***The total time for exercise routine is 45 – 60 minutes***
Five years had passed since the car accident, and by then we realized that Mark’s mobility was dependent on the daily practice of movement. With no more therapy benefits allowed by the insurance company and a move from our Sandy home to Draper, UT, all of Mark’s exercises were now dependent on my help. Our two children, Christopher, then 13 years old, and Katie, twelve years old, helped a lot with the house and yard chores, but I wanted to protect them from the caregiving of their dad.
With our queen-size bed substituting as a mat, we had a stretching routine where I assisted Mark with range of motion exercises every morning. I didn’t have the knowledge of what else I could do for Mark at home. Over time, I became concerned that Mark was losing some of the abilities he had worked so hard to gain.
I didn’t share my concerns with many, but one day I mentioned it to Holly Dudley, during a visit. Unbeknownst to me at the time, her husband, John Dudley, was a chiropractor, and Holly shared my concerns with him. While living in Canada, John, with other members from our church, had helped a man with disabilities do exercises. He felt certain that he could implement a similar program for Mark.
John came over, and together we got Mark down on the carpeted floor in the main living room. He showed me some of the exercises they did and we discussed several other exercises he thought would be helpful for Mark.
“Would you mind if I put together an exercise program and talk to the bishop about getting some volunteers to assist you with the exercises?” John asked.
To be honest, I felt embarrassed and ashamed to need help. I wanted to say “Yes, I’d mind!” But I didn’t, because I knew how important it was for Mark to get the exercise. I swallowed my pride and humbly thanked him for his help.
With John’s chiropractic education and experience, he came up with an amazing exercise program that could be done on the floor. He organized a schedule he passed around at church for people to sign up to help. He also held a few training sessions with the volunteers and gave us written instructions with diagrams he’d drawn for the exercises. Our new program was put in place just nine months after we moved to Draper. It was a miracle to us that so many volunteers were willing to come and help us—especially when many of them didn’t know us.
It was much harder to accept help from our new neighbors because we didn’t know most of them. I was afraid they would think I was a needy person or taking advantage of their time. It’s a conflicting position to need help whilenot wanting to need help.
Since our car accident, we have been blessed by more than fifty volunteers. My heart if so full of appreciation it fills like it will burst as I think of each one that has given their time to help Mark. Many have come and gone—but their service will never be forgotten.
There are four couples who have been steadfast in their dedication, and have faithfully come every month for ten to seventeen years. Needless to say, these couples are no longer neighbors and friends: they are family!
We have also been blessed in many ways by The Church of Jesus Christ of Latter-Day Saints. One way, is its assistance in the organization of the exercise program for all these years. We are grateful for a loving Heavenly Father, who has comforted and guided us to guardian angels in the form of volunteers. Their time and effort, love and support, has not only lightened our load, but lifted our spirits. They’ve made it possible for Mark to gain greater control of his body, and their conversation with him has improved his speech. We are forever grateful to each one of them!
Jim & Michelle Bonner Who have come for 11 years.
Ellen & Mckay Douglas- The bishop who originally helped organize this program 17 years ago.
Paula and Dan Bergenthal, with their kids, David and Jared. They’ve helped Mark for 14 years. Jared was just a baby then.
Carol and Carl Wengel From the original group. They’ve helped Mark for 17 years.
Quinn Woolley and Mike Pitts
Missing Pictures:
Steve Reidy and David Carr.
Plus
Wayne Burton and Jake Dotson.
I hope to get their pictures and add soon.
****************************** Every Monday and Wednesday night we have someone here to help Mark with exercises. This totals, three couples, one family, plus four men who usually bring a young man with them. Each pair comes once a month.
Tuesday Tips will describe the exercises Mark does with their assistance.
Many people assume that because Mark is confined to a wheelchair he’s paralyzed—but, he’s not. Mark has a traumatic brain injury and was comatose for three months. He has damage throughout his brain but the most severe damage was to the brainstem, which is the region of the brain that connects the cerebrum with the spinal cord. The brainstem coordinates motor control signals sent from the brain to the body, so, although he has feeling in his legs and feet, he has a hard time controlling them. It’s not that he has forgotten how to walk or talk—he just can’t coordinate the signals sent from the brain to the body.
Years ago, experts believed that changes in the brain were only possible within the first few years of a traumatic brain injury. But research has shown that the brain is capable of altering existing pathways and even creating new ones. Our motivation for Mark’s continued exercises has come from the hope and understanding that his brain will create new pathways or improve the existing pathways so that he can regain control over his body. This has been our driving force for twenty-two years.
When I brought Mark home from the hospital, eight months after the car accident, he only had a few abilities. He could breathe on his own, and could eat finger foods. Using utensils was hard to do because he didn’t have the coordination. His speech was impaired, and swallowing was difficult for him. He didn’t have much control over his arms, hands, and had no control over his legs and feet.
In my article title, IfInsurance Denies—Make an Appeal, I explained our battle to keep therapy going after Mark returned home. I made a total of four appeals to the insurance company. In three out of those four appeals, the insurance did continue therapy, but decreased the amount of time with each appeal.
Being in our thirties, we had youthful energy on our side. We hoped for more improvement, and we were determined and not afraid to work for more improvement. Needless to say, we were devastated when the fourth appeal was denied.
We had been at Western Rehab for more than eighteen months—it literally had become our second home. By then we knew every therapist there and appreciated their work. They had a lot of time invested in Mark and truly cared about his progress.
Part of Mark’s physical therapy was done in the pool. Western Rehab had a lounge chair which hoisted Mark in and out of the water. Wearing a life jacket he could do much more in the pool with the buoyancy of the water. Since it took two people to work with Mark, I became the pool partner with the therapist, Tawnya. Mark could move his arms more freely, kick his feet and could even walk with a walker in the warm water. We became good friends with Tawnya over the many months of working together. When therapy was coming to an end she suggested I find friends to come and help me with Mark’s exercises during their “open plunge time” for just a minimal fee. Tawnya, assured me that she would be there to oversee the group during this time, so she could continue to encourage and make suggestions of exercises we could work on.
I asked a couple of neighbors to help me with Mark in the pool. The news quickly traveled in our Sandy, UT, neighborhood and before I knew it, we had several neighbors volunteering their time to help. Mark continued to progress as we worked on swimming and walking in the water. We went at least twice a week, and over a four-year time frame, there were more than a dozen people who came to help us. Each one had a specific day in a month and spent more than an hour with us in the warm water, seemingly cheerful and grateful for the experience. Most were men who came to help, but there were a couple of women also. This continued until we moved to our new home in Draper, UT.
We were the luckiest couple I knew to have such wonderful friends to help and support us. We were so grateful that Western Rehab was so close to our Sandy home and allowed us to use the pool and other exercise equipment also. This made it possible for a determined Mark to continue exercising for five years after the accident.
In 1996 we built a new home with my parents which fit our needs better—but it was so difficult to leave our beloved neighbors and friends of sixteen years in Sandy. They had truly helped us get through a very difficult time.
Next Sunday Story: The Miracle of Volunteers: part 2, featuring Draper, UT volunteers
Uniting Caregivers 