A Blessing in Disguise

i_dream_of_jeannie-showThere is always plenty of work to do and the holiday season is no exception. Thanksgiving dinner was wonderful, but a lot of work. After hours of preparation, there’s the cleanup. What about Christmas? There’s more preparation for parties, dinners, decorations, shopping for gifts and all of this is done after employment hours. Sometimes I wonder why we do so much. Work Bewitched1can be stressful, strenuous and difficult. During those times I’ve dreamed of a genie (pun intended) granting my wish for less work and more play. In my youth, I also loved to watch the fantasy comedy sitcom, Bewitched. I’ve thought how awesome it would be to have the magical ability to accomplish anything with a twitch of my nose, clap of my hands, or a snap of my finger and thumb, eliminating all the hard work.

Have you ever thought of work as a blessing? Usually I think of it as the means to provide for the necessities of life. Without work, how do you pay for, prepare for, or participate in recreational activities and vacation time? Everything takes work, including the fun times.

I didn’t realize the worth of work until after our car accident, which made it impossible for Mark to continue in the electrical career he was schooled and trained in. He dedicated twelve years to the trade and was successful, reaching the highest level as a master electrician. After eighteen months of rehab, he was anxious to get back to work. Realizing he wouldn’t be able to work as an electrician while in a wheelchair, he asked every day what he should do with his life. He said he needed to be productive to have self-worth and wanted a purpose for life. Work provides purpose.

It was hard to imagine what he could do or that any other kind of work could bring him the fulfilment the electrical field did. I tried to convince him that rehab was his job. His focus should be regaining his physical and speech abilities so that he could go back to work as an electrician. Two years passed and he continued with his rehab, having eye surgery to fix his double vision and two surgeries on his feet to correct the foot drop, which made it difficult for him to stand. He continued to ask often when he could go back to work. I hadn’t realized before how important work is for making life worthwhile. Sometimes we don’t appreciate what we have or what we can do until it’s no longer available.

We volunteered at our children’s elementary school twice a week, reading with the kids or helping with math and spelling. Mark enjoyed the kids, but sometimes they couldn’t understand him because of his speech impairment. Children are so honest and they would ask him often what happened to him or why he couldn’t walk or talk. These comments were probably harder on me than they were on Mark. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried they might become discouraged or uncomfortable with our circumstances so I thought it would be best if we volunteer elsewhere.

After checking into options with our church, Mark was able to do some volunteer work at the Bishop’s Storehouse posting food orders in the computer twice a week. He also went to my brother-in-law’s family music store to stamp their logo on their sheet music at Day Murray Music. He enjoyed and appreciated the opportunity to go to these places and volunteering his time, but he wanted to financially contribute to our family needs.

The next year brought two more surgeries to fix Mark’s hip joints, which were filled with calcium, making it impossible for him to bend at 90 degrees. With his sight still set on getting back to work, I heard Mark often rehearsing electrical codes or terms so he wouldn’t forget them. He wanted me to pay the fee to keep his Master’s License current, but he was willing and wanting to do any kind of work until he got back on his feet. I had a hard time envisioning him finding any kind of employment because he was dependent on me for most tasks of daily living such as dressing, transferring in/out of the wheelchair and transportation, but wanting to support his goals, we pursued Vocational Rehab.

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Mark at work desk at Discover Card

The male crew in the mail room

He went through an intense week of testing. His I.Q. score was higher than normal, but his physical skills were low. The program helped place him in a part-time job at Discover Card. He did computer work recording P.I.N.’s (personal identification numbers) and enjoyed that job for eight years until they closed down the mail center. This was the appointed area for all the eight employees with special needs. They worked together with one supervisor who was trained to oversee and help each individual accomplish their job. Most of the special needs employees sorted the mail to the various departments and delivered them there. Mark worked on the computer, but because he needed help getting to and from the Paratransit bus to his desk, the restroom, lunchroom plus make sure he was stocked with the paperwork needed for his computer entries, his work desk was located in the mail room. He couldn’t do this job without the help of the supervisor. The group of special needs employees were devastated when they were replaced by equipment which sorted and delivered the mail to the various departments in 2004.

Discover Card mail room crew

2004 Discover Card mail room crew

What do we do now? I knew it would be hard to find a job where Mark would be safe and get the help he needed to accomplish work tasks. I also knew he wouldn’t be satisfied being at home every day without work. I learned the importance of work and realize its worth is so much more than the monetary value. Work brings happiness.

Work is a blessing in disguise. We may curse it and wish we had less of it to do. I no longer dreamed of a genie to lighten the work load, but rather one who could help us find work for Mark. I wished I could twitch my nose, clap my hands, or snap my finger and thumb and make a job appear.

On Tuesday I’ll share with you tips on how we found work for Mark.

Live and Learn

Live and learn

Several years ago my sister Rosanne said, “I often hear the phrase ‘you live and learn’, well I’m tired of learning, I want to start living!”

We laughed and the memory of the conversation still makes me smile. We were both raising children at the time, and learning all sorts of things we didn’t ever expect to learn. It’s one of those conversations etched in my memory that brings sisters or friends close as they share experiences.

It’s true sometimes we don’t get to choose what we learn. As a caregiver, often I have thought I didn’t sign up for this course, or I don’t want to know about this. There’s a certain amount of responsibility that comes from knowledge, so sometimes I think, ignorance is bliss!

In reality, it’s the unknown which causes fear. Whether it’s about a disease, injury, grief, or even raising children, the more we learn about it, the better we can handle it and usually it then becomes less dreadful. Knowledge gives us opportunity to improve and cope better. Knowledge makes us useful and compassionate. It’s the key to understanding others as well as ourselves. Knowledge makes a difference in how we live.

Because we’re always learning, we change through our experience and knowledge, therefore our relationships change. Some get better, some seem to stagnate and some come to an end. My experience is that every relationship, no matter how long it lasts, serves a purpose. Some teach us to be better than we are. Some show us what we don’t want to be, while others remind us just how blessed we truly are. Some keep pushing us forward helping us become what we are meant to be. Every relationship teaches us something. Don’t regret those that end for they were worth the effort if you grew from the relationship.

Untraveled journey

So when you get a course you didn’t sign up for or have a relationship that changed or ended, look at it as an opportunity to learn and grow.

Strength in Numbers

Being StrongThe Winter Olympic Games are upon us and it is evident there are countless hours in many years of training for the athletes to compete. The hosting city and country plan and prepare four years and it’s a proud time for them as they show off their beauty and hospitality to the world. It’s sensational to watch it all unfold. Various athletes from all over the world coming together in Sochi to do their very best, showing their strengths and abilities.

It’s obvious there are many people behind the athletes as they prepare for the games. Besides family and friends that encourage and help them, there are coaches, technique specialists, apparel consultants, etc. All have the same goal and vision for the athlete to succeed. They’re amazing to watch and usually you’re only seeing one person competing, but in reality there’s a team of people standing behind the one athlete you’re watching. All making their success possible.

We all need others to succeed in our endeavors. No one makes it alone. It’s wonderful to have family and friends help and encourage us. They hear and see us with their hearts. It’s also beneficial to build relationships with others who share your goals, stress and struggles. They hear and see us with their experience. A meaningful and comforting way to boost one another. This is my goal with Uniting Caregivers. Together we can learn and improve our abilities. Sharing our stories and how we cope encourages and gives us strength.

Support groups are formed for most anything you are dealing with; addiction, brain injury, cancer, divorce, epilepsy, mental health, stroke and the list goes on. Mark and I have benefited from the Brain Injury Support Groups and the Epilepsy Support Group. We have learned much and it’s comforting to be with people who know and share our experience.

Tomorrow night a friend and caregiver of a brain injury survivor, Laura Nordfelt, is starting a new Caregiver Support Group in Murray, Utah. The meeting is in conjunction with the Brain Injury and Stroke Survivor Meeting from 7-8 pm. It will be held at the Intermountain Medical Center, 5121 South Cottonwood Street, Building 6, Classroom 8.  The caregivers and survivors will meet first together and then split into two separate groups. The facilitator, Lynn Anderson, who has a MS in Social Work will meet with the caregiver’s group.

Support groups are a wonderful way to share and improve your experience. I encourage all to Goggle “support groups” in your area to find the help and support you might need. There is strength in numbers!

If Insurance Denies – Make an Appeal

Dr. 1992After I brought Mark home from Western Rehab, the insurance company agreed to pay “day-patient” therapy for three months, which meant I took him Monday through Friday for all day therapy. After three months, they denied the request for continued therapy, stating, “If he is well enough to be home he didn’t need that intense level of therapy.”

I appealed, by calculating and stating the large amount of money saved in nursing care by having him home. I also requested that they send a representative to come to Western Rehab and observe him in therapy. I was sure if they witnessed his level of care and need for therapy they would approve it.

Blue Cross Insurance did send a representative, and after the observation they did extend his therapy for another three months at “day-patient” level.

In June 1992, I had to make another appeal for therapy to continue. “Half-day” therapy was granted, allowing Mark to have speech, physical and occupational therapy once daily.

In August 1992, a third appeal for continued therapy was made. “Out-patient” therapy was granted through the end of the year, allowing therapy three days per week.

It was a fight to keep the therapy going after Mark returned home — but the fight was well worth it. I did make a forth appeal for therapy because we still hoped for more improvement. The forth appeal was denied.

1992 - Mark with his Therapist at Western Rehab

1992 – Mark with his Therapist at Western Rehab

I was grateful for the year of intense therapy. He learned to drink and feed himself; speak more clearly and work his facial muscles into a smile. His cognitive skills improved. He gained enough strength to propel his wheelchair. All big steps in the right direction.

Even though Mark’s rehabilitation was not at the level we had hoped for when it ended, we appreciated the insurance company for extending the therapy benefit three times.

We are so grateful for the knowledge of doctors and therapist’s who helped Mark achieve a better quality of life.

Home for the Holidays

Christmas can be a magical time, when wishes are granted. This was definitely the case for Mark and I twenty-two years ago. After eight months of hospitalization, I was finally able to bring Mark home —  just in time for Christmas. He was far from better and still needed extensive therapy and care, so I worked on establishing a “day- patient” schedule where he’d be there all day for therapy and I’d be able to care for him every night at home. At the time he wasn’t able to feed himself or take care of any personal needs. Mark’s doctor, Joseph Vickroy, and the rehab team of speech, occupational and physical therapist, requested that we spend several nights in an apartment-like room located in the center unit where Mark had been for six months. They felt it was important for me to understand the responsibility of caring for Mark before they released him.

I thought the suggestion was trivial since I had spent every day with him and fed him most meals anyway; however, I understood their concern and agreed to do it. I spent several nights there and took complete responsibility for him. Our two children also spent a few nights there to understand what life would be like to have Dad at home.

Once we realized Mark was going to be wheelchair dependent, we knew some home modifications would be necessary. In October 1991, we started building a large room which would become our bedroom with a wheelchair accessible bathroom off the back of the house. Fortunately, my dad and brothers work in construction and they were willing to do the job. My oldest brother, Mick, designed the addition with a ramp for the new back entrance. If you’re blessed to have a father who is an excavating contractor, “you can’t add a room without a basement.”

Top: Left - Don breaking ground. Right - Steve, Mick, Dad preparing for footings. Middle: Left- Dad. Right - Steve and Mick pouring the footings. Bottom: Left - Steve and Dad. Right - Mick, Steve and Dad pouring the cement floor.

Top:        Left – Don breaking ground.          Right – Steve, Mick, Dad preparing for footings.
Middle:  Left – Dad trying to escape.            Right – Steve and Mick pouring footings.
Bottom: Left – Steve and Dad.                        Right – Mick, Steve and Dad laying cement floor.

Because they were building this addition on their own time after work, it was not completed in December. Despite the unfinished construction we wanted Mark home for Christmas. Mark’s care was physically difficult until the new bedroom and bathroom were finished, but well-worth all the effort to have him finally home. Our regular bedroom wasn’t big enough for all the equipment now needed for Mark. Our queen-sized bed had to be replaced with a single-sized hospital bed. At night, after I transferred him into bed, I would raise it as high as it could go and place my air mattress on the floor in the only space available — which meant my legs were tucked under the bed. Worried that Mark might forget I was there and use the controls to lower it, I would unplug the bed every night.

This sleeping arrangement made for many jokes. I often said as I unplugged the bed, “You are now out of control.” He teasingly replied, “But, I’ve got the top.”

Our living quarters were cramped and hard with the construction going on, but it was so worthwhile. My heart is filled with gratitude for my dad and brothers who made our home so much better for our new circumstances. Our trials were lightened by their skills and hard work.

Top: Left Don knocking out the brick wall into the new addition Bottom: Left - Chris, Katie, Dad and Mick nailing the top floor down. Right - Chris and Katie painting our the new room.

Top: Left and Right – Don knocking out the brick wall into the new addition.
Bottom: Left – Chris, Katie, Dad and Mick nailing the top floor down.                                   Bottom: Right – Chris and Katie painting our the new room.

After nine months of living in a hospital — it truly was the merriest of Christmas’s to have Mark finally home.

Finished room in March. Christopher, Mark and Katie.

Finished room in March 1992. Christopher, Mark and Katie. Mark in our new queen-size adjustable bed.

My Secret

The summer of 2013 was the hardest since 1991. Mark was in the hospital three times for a total of thirteen days, a care center for rehab for an additional twenty days, and home healthcare for about sixty days, which is still on-going. The cause of this four-month trial is blood clots. Mark has had no previous history of blood clots, recent surgeries or injury, yet he developed multiple clots in his right lung and left leg. The doctor’s best reason is inactivity.

While Mark was at the Care Center, a therapist said to me, “You stay so positive and supportive. What is your secret?” I was taken by surprise by her question and compliment and my expression must have shown it. “No really,” she said, “I’d like to know so I can share it.”

“I don’t think I have a secret. I love my husband and want him to be the best he can be.”

I’ve thought about that conversation a lot. Ironically, the therapist didn’t know that I had a break-down several days before her question after enduring a sleepless night in the emergency room.

At the hospital, we were overwhelmed with tests and the concern of why his blood clots had grown when he’d been on blood thinner medication for several weeks. The conclusion was that he needed to be admitted in the hospital for the third time this summer. At 5:30 a.m. Mark’s nurse from emergency pushed him on the stretcher to his hospital room. Two aids moved him from the stretcher to the hospital bed. We met the doctor and nurse that would be caring for Mark. I settled in on the bench in the hospital room with a blanket and thought, great, we can now get some rest after our stressful, sleepless night in emergency.

Not so. Soon there was the shift change so we met the new staff, then a routine started. Every ten minutes a doctor dressed in green scrubs would come into the room, poke and prod, ask a couple of questions, and leave the room again. Just when I thought we could finally get some rest another doctor or nurse appears again. This routine lasted through breakfast and for several hours. Exhausted and frustrated with the situation and hospital, my head was pounding and I felt nauseated. The worry and constant interruptions with doctors and nurses had pushed me over the edge. It took a toll on Mark as well. He started having a series of seizures. The doctor said I should go home and get some rest.

“I can’t go without Mark. I worry his needs won’t be met because of his speech impairment and short term memory loss.”

He assured me that Mark would be well cared for. The thought of him being alone and confused about where he was and what was happening to him was more than I could bear. Nevertheless, I felt physically ill from exhaustion, so for the first time in twenty-two years, I left Mark alone in the hospital, adding “guilt” to my burnt out state.

As soon as I arrived home, I called my brother Steve, who doesn’t live far from the hospital. He rushed to stay with Mark until our son, Chris & his sweetie Jenn could be there. They stayed overnight and into the next day until I arrived. The following night, my daughter, Katie & her husband Eldin came and spent the night until I arrived again the following day. Family shifts were organized for the week he was hospitalized so I didn’t have to carry the stress and worry alone. I got the rest I needed to get better. I’m forever grateful for my family!

After contemplation, I realized, that’s my secret. I have a wonderful family which stands behind me and renders help whenever and wherever needed. I also have great friends and neighbors that do the same. This remarkable support group makes it possible for me to be the positive and supportive caregiver I want to be. I could not do it alone.

What is your secret?