Find Joy in the Journey

Photo from Brian Injury Alliance of Utah Newsletter
BIAU Conference October 24, 2013

Dad, Mom, Ruth & Don at the Award Luncheon

Mark Fox who presented the award. Also a therapist who worked with Mark 22 yrs ago.

Nurse Susan who took care of Mark at Western Rehab 22 yrs ago for eight months.

Every once in a while something really nice happens — when it does, write about it in detail. When you are feeling down, read it. Hopefully you will have pictures to look at too. Remember the joy you felt and your spirits will be lifted.

There was a lot of worry with Mark’s health this past year. But there was joy as well. The highlight for 2013 — The Annual Brain Injury Alliance of Utah Family and Professional Conference, where I received the “Family Award”. I was so surprised! Mark, my parents, siblings and children were all there in attendance, which magnified the honor. It was a day I will always cherish.

The next day, our daughter and son-in-law, Katie and Eldin hosted a surprise dinner award celebration for us. All family members, including nieces and nephews along with some exceptional friends who come and help Mark with exercises were there. Wow—two very huge surprises in two days! I did not plan or have any knowledge of these two big events. What does it mean? Surprises are the best!

When I think about what brought me the most pleasure in 2013, I realize it was time spent with family and friends, and special events which were made memorable because of them.

Our daughter, Katie made a memory book filled with pictures of these two events, along with the nomination and award letter that was read at the time I received the award. She gave us the memory book for Christmas. It is a treasured gift and I will look at it often— especially when I’m feeling blue.

I would love to read what brings joy in your journey. Please feel free to write in the comment box.

Best wishes for a happy and healthy 2014!

https://unitingcaregivers.wordpress.com/2013/10/29/share-a-sweet-recognition/

Time for Reflections

Christopher, Jen, Katie, Eldin
Mark and Barbara – 2013

The hustle and bustle of Christmas is over. Now my thoughts turn to the New Year. Eager for a new beginning, I’m filled with hope for a successful year. My goals are similar to last year’s with renewed faith that I can do better.

As I reflect on this past year, I did not reach my goals—I’m still not punctual; I’m still over weight, and I did not write the book I’d planned. It’s remarkable I don’t give up on these goals. I must truly believe that I have not failed until I quit trying. Life is interesting and rarely goes the way I planned. However, I do believe setting goals, is the strongest force for self-motivation.

Although I did not reach my goals, there were small victories, pointing me in the right direction. I did take a writing class to improve my writing skills, January through May and I did get two chapters written and edited. I also joined the American Night Writers Association, and I’m a part of the Salt Lake Storytellers Chapter. I have learned a lot about writing and publishing, and I realize I have a lot more to learn. I have put my book goal aside for now to concentrate on my blog and writing technique. Some time in the future, I plan to use my blog articles to help me complete my book.

Another victory, not on my goal list, was keeping up with my job as an account manager for Earthwork Property Management. I have deadlines for specific tasks for my job, and do not think of them as goals, but I’m relieved every time I meet the deadline—especially this past summer, while Mark was hospitalized twice for blood clots. He also became very weak and was released from the hospital only to be admitted to a rehab center for three weeks in August. This consumed much time and energy. Most of the hours in a day were spent by Mark’s side, but I was still able to achieve the important tasks of work. As I look back on those months, I should have felt more pleased at the accomplishment of meeting each deadline instead of just relieved.

The only known cause for these blood clots is Mark’s inability to be active. He did receive eight weeks of home health therapy after returning from the rehab center but now, it’s all up to me to make sure he gets the exercise he needs. To prevent more blood clots, he takes an anticoagulant. This affects his diet which requires better meal planning on my part. More exercise and planned meals is an important goal for 2014 improved health.

Goals take work and constant planning. When life keeps messing up plans, it’s discouraging and easy to think, why make plans? I don’t plan for seizures, illness, accidents or hardships, but they still happen.

I agree with Harvey Mackay, who said, “If you fail to plan, then you plan to fail.” I don’t want to waste time on regret, or become discouraged over the major goal not accomplished. Instead I should recognize the minor victories. This new year, I plan to break down my goals into obtainable pieces and allow myself to feel joy for every small success.

While striving to reach goals I want to remember—faith, family and friends come first. It may take longer to accomplish the goal when putting them first, but they are most important and make all goals worthwhile.

I’m so grateful for new beginnings which encourage me to recommit to another year of self-improvement. 

A Happy Life

A few years ago I stopped by my Grandma and Grandpa Rose’s grave at Christmas time to leave a flower. Before I approached their grave, I noticed the sweetest little Christmas tree I have ever seen, decorated with homemade ornaments. I stopped to admire it and realized it sat at the head of my cousin’s grave. Karen Rose was born December 20, 1952 and died three days later. She was buried on Christmas Eve.

I knew that my Aunt and Uncle had a tradition of taking their other children on or around her birthdate to the grave to decorate a tree, but this was the first time I had actually seen it. I was so touched that after all these years my aunt and uncle now in their late eighties, still carried on this tradition with their family.

I realized the death of any child would be heartbreaking, and loosing a baby at Christmas time must add to the distress. With tears in my eyes, I understood for the first time our Rose family Christmas party was held on the day she past away. How hard that must of been for them—but they never seemed sad.

For sixty-one years, they’ve celebrated her birth with a Christmas tree and focused on their knowledge that they would someday reunite with Karen. What a wonderful gift our Heavenly Father has given us through Jesus Christ—who made it possible for us to be reunited with family, not just at Christmas time, but throughout all eternity.

Thank you Uncle Wayne and Aunt Joy for your example of making a happy life despite heartache and disappointment.

Traditions Make a Family Close

1972 Rose Family Christmas Party.
Grandpa’s last with us – top right corner. I’m on the third row in the purple shirt. My oldest brother Mick and cousin Larry are missing. They were on LDS missions.

When I reflect on my childhood, it is the holiday traditions—not the gifts—which are memorable. At Christmas time we met at Grandma and Grandpa Rose’s house for a family party on Christmas Eve. During the gathering time we ate Grandma’s fudge and banana slush. When all arrived, the party began with one of my grandparent’s children and their family taking a turn presenting the Christmas story. Afterwards, all the children took a turn sharing a talent—singing, playing an instrument, reading a poem or telling a story or joke. All eighteen grandchildren were expected to participate. Some paired up and did things together. Then we sang Christmas carols and Santa and Mrs. Clause came to pass out their gifts. Grandma and Grandpa went to a lot of work to make it such an enjoyable evening.

1972 Grandma Rose passing out gifts

As the Rose family grew we switched the party to December 23^rd to accommodate a larger family’s schedule.

The best gift they gave us was a close family and wonderful memories with grandparents, aunts, uncles and cousins.

2013 My parents with Santa, carrying on the tradition. Merry Christmas!

Now that my grandparents are gone — my parents, both in their eighties, carry on this same tradition with their children, grand- and great-grandchildren now totaling seventy-three people. Too large for a family picture. They go to the same work as my grandparents did to keep our family close and build wonderful memories for the new generation.

The Best Christmas Gift

December 25, 1982
Christopher 3 days old

My experience has been the best gifts are those you wish a long time for. We had hoped to become parents for three years before our first born, and only son, joined our family December 22,1982.

I remember the doctor coming into the delivery room whistling Christmas carols. He teased me that my timing was terrible — I had interrupted his family’s Christmas party.

“I’ve waited a long time for this baby! Now is the perfect time,” I said.  “I can’t think of a better Christmas gift.”

I related to the Christmas Story that year more than before. How did Mary ride that donkey being great with child? I literally felt her discomfort.

It was hard enough to deliver a baby in a sterile hospital with Mark, a doctor and nurses there to comfort and assist me. How dreadful the situation must have been for Mary, to deliver a baby in a stable with only Joseph there. Angels must have been sent to assist and comfort, but still, what a grim place to deliver a baby. The smell and the dirt along with the noises from the animals could only intensify the stress and worry of the delivery.

I can’t think of a better way to feel the true joy of Christmas other than bringing a baby of our own into the world. What’s more precious than the gift of a child? We learn so much from them and they are a gift that keeps on giving. Usually, they give joy and happiness, and when they don’t—we are growing and learning how to be better parents and how to love unconditionally—the way Christ loves us.

For several months we talked about the perfect name for our child who was going to be a Christmas baby. Christopher, meaning “Christ-like” or “steadfast for Christ”, was our perfect choice.

Since 1982, Christmas has been double the pleasure.

  

Childhood Highlights

1991, Pinewood Derby car wins 1st place.

1992, Comic is published in newspaper.

We appreciate Christopher’s artistic, musical, & handyman gifts.

2013 Christopher playing at Sun & Moon

Happy Birthday to a wonderful son!

Feeling Gratitude

So grateful for our daughter Katie, who takes her dad shopping every year for my Christmas, Mother’s Day and birthday gifts. She has done this faithfully ever since she’s had her drivers license — and since she’s been married, her husband, Eldin joins her. When Katie was a little girl, Mark took her shopping for my gifts. We didn’t realize she would be continuing the tradition, when at age sixteen she started taking Mark shopping for my gifts. What a sweet and thoughtful daughter we have. We are so grateful for Katie and Eldin!

It has snowed all day today. So blessed to have wonderful neighbors who shoveled my walks and driveway. I am so fortunate to live on this street. I love my neighbors!

If Insurance Denies – Make an Appeal

After 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

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

Friends Are Angels

So grateful for the angels around us who shoveled the snow off our driveway and walks a few times this past week. It snowed a lot and we have a big driveway which seems to grow larger in the winter months.

I am fortunate to have parents so close, (just downstairs) who still like to take care of me even though they aren’t in the best of health. I appreciated the chicken noodle soup when I was sick.

Don’t Share the Bug

Even when I don’t feel good, it’s hard to stay home when there are places to go and people to see. Isn’t it customary to push the limits? The last thing I want to do is share this bug and besides, I’ve been places many times where sick people were pushing their limits to attend an event. Their coughing and sneezing always makes me wished they would’ve stayed home.

As a caregiver it’s hard not to share the bug with those who depend on us. When I feel least like cleaning — it’s most important that I do. I love those disinfecting wipes, they make it so easy. I try to keep TV remotes, door knobs, phone, key boards, handles, just about anything that I touch, clean with the disinfecting wipes. If I use a sponge, I zap it in the microwave, but beware: a dry sponge can catch fire. Be sure to soak your sponge before you nuke it.

When I transfer Mark in or out of his wheelchair, I remind him that I’m feeling weaker than usual, therefore I need him to do his very best to help. I don’t hold him as close as I usually do and I remind him to look the opposite direction than I am, and no kissing😦. So far so good — he hasn’t caught the bug yet. I know he has a strong immune system, but I like to think these efforts help too.

Since I enjoy using an electric toothbrush and can’t afford to replace it often, I clean it by dipping it (before use) in isopropyl alcohol and then rinsing it with water. I also wash my hands many times during the day to keep from spreading germs.

Please comment and share your tips on how you stay healthy or keep from spreading germs.