Anticipating the New Year

As a child, December was a long month of anticipation and wonder. The excitement in the air nearly took my breath away. I felt gloomy when the Christmas season and school break came to an end. The thought of having to wait another twelve long months or 365 days to feel that kind of joy and excitement was dreadful. Many Christmas’s have come and gone and the month no longer brings a school break, in fact it’s just the opposite.

As an adult, December can feel like a month of endurance. At work it’s a month of year-end bookkeeping and preparations for the new year. It would be a busy month all on its own, but throw in Christmas and all the beautiful decorations, sounds of terrific music, pleasure of parties, delicious baking and delightful shopping because everything is on sale. It’s no wonder we feel exhausted, overwhelmed and often get sick.

At the end of the year I always suffer with melancholy. As a child, it was because the Christmas season and break was coming to an end, as an adult it’s because I remember the year’s resolutions I didn’t achieve and other unfulfilled expectations. I’m plagued with wondering how I can better plan for the new year and actually complete my goals.

 

I commit the sin to often  of comparing myself to others and what they have accomplished. I question why I can’t do better. The antidote to melancholy is optimism and I’m giving myself a healthy dose of it over the next week as I prepare for a new year, new beginnings and a better me.

A change of heart occurs when I reflect on the blessing of family, friends and experiences of the past year with grateful heart. When I’m thankful I find peace with my life and my relationships. This is what December and every other month should feel like—joy, peace, gratitude and goodwill to all mankind. If you are reading this, I thank you for being a part of my life’s journey.

I’d like to share with you my plans for the new year. In the past, Uniting Caregivers has had three categories: Sunday Stories, Tuesday Tips and Thursday Thoughts. I’ve decided to drop the day and have  categories of Stories, Tips and Thoughts. I still plan on posting three times a week, but without the days listed two stories may be posted in a week or two tips, or two thoughts depending on the inspiration that week. If a guest author has written two parts to their story it could be posted simultaneously on a Sunday and then on Tuesday. At least one inspirational story will be posted every week and the follow up tip may be shorter than in the past.

 

 

The Book of Life

The years come and go and each one leaves me a little older with a different perspective on life.  It’s a good time to reflect on where we’ve been, how far we’ve come and appreciate the people who have been by our side through it all.

Our 2014 chapter review:

We love and appreciate our home, which we have shared with Mom and Dad for eighteen years.  We enjoy helping each other and find comfort in having them close by. They will celebrate their 65^th wedding anniversary in 2015. We’re grateful for their example and all we have learned from them.

Our son, Christopher, moved to Vancouver, WA in September. He is still working as an Air Conditioning and Heating Technician and found employment there. He is enjoying his adventure in a new city and state. He lives in the same town as his Grandma Wilson, Aunt Karen and Uncle Mark. We miss him, but we are grateful he is living close to family and the opportunity they have to spend more time together. We only wish we could be in two states at one time.

Dad, Mom, Chris, Katie, Eldin, Barbara & Mark

Our daughter, Katie, and her husband, Eldin, live in West Valley, UT. Eldin works for American Express and Katie just celebrated five years with her own business, Graphic Forte, where she’s a successful graphic designer. They are very busy with Eldin being a bishop for the past 3 ½ years. It is so rewarding to watch both Eldin and Katie grow in this calling.

Katie had her cancerous thyroid and several surrounding lymph nodes removed in March 2014. She recovered well and is cancer free now. She looks great and is feeling better, which we are so grateful for.

Mark has spent his weekdays working at Ability Choice Services doing assembling work, but that contract will end this month. I’m still working as an account manager for Earthwork Property Management and appreciate the opportunity they allow for me to have a home office.

I started UnitingCaregivers.com in October 2013 and will have posted 190 articles by the end of this month. It’s time consuming, but rewarding and has far exceeded my expectations. Thoughts of what I’m going to write about are constantly dancing around in my head. I am also a part of two writing groups, American Night Writers Association and League of Utah Writers. I enjoy my association with these two groups and they’re part of the inspiration that keeps me writing.

Another hobby is gardening. We had a great vegetable garden this year with lots of squash, corn, cantaloupe, tomatoes, peppers, onion, cucumbers and broccoli. Unfortunately, the brussel sprouts, cabbage and cauliflower didn’t do well. We also have twelve grapevines, lots of raspberry and blackberry bushes, along with two strawberry beds. Mark was a great help with canning lots of salsa, vegetable soup and grape jam. We also expanded the orchard to twelve fruit trees this year, but the trees are not producing enough fruit to bottle yet. Having one acre gives us a lot of work, but we enjoy being outdoors so it’s great.

Mark and I with Mark Fox, the award presenter.

Mark received the Survivor Award this year at the Annual Brain Injury Alliance of Utah Family and Professional Conference. It’s been twenty-three years since the car accident. He’s not only survives, but thrives and we are so proud of his perseverance, positive attitude and endurance. Mark’s mother flew in from Washington and was there for the ceremony along with my parents, siblings, Katie and Eldin. It was a day we will always remember, which extended into a wonderful weekend as Mark’s sister, Karen, and brother-in-law, Mark, flew in later that night to spend a few days with us in celebration. We loved spending time with them and enjoyed taking them to Sundance and Park City.

Katie, Eldin, Barbara, Mark, Mark Ray, Karen & Mom W.  We’re missing Chris, Jerrie & Jon.

 

Our days have been full with work, gardening, exercise, plays, concerts and writing. No time for trips this year, but we are looking forward to going to Idaho and Washington next year to visit family.

With December coming to a screeching halt I look forward to a new chapter of happy and exciting times, but realize some sad and difficult times will be sprinkled in the mix. I’m anxious to turn the page and see what I’ll have to write about in the next chapter.

I hope 2015 brings you good health and much happiness.

The Spirit of Christmas

By the magical light of a small Christmas candle
A little old man tries to carefully handle

The small porcelain manger which serves as a bed
For the wee Baby Jesus to lay down His head.

In wonder he brings the manger up to his view,
Smiles at the baby and whispers, I love you!

I love you for bringing this season of joy,
I love you for growing to a man from a boy;

For being our light and leading the way,
For being the spirit which makes Christmas Day!

You have been my mentor, my model, my hero and guide,
Please continue to help me and stay by my side.

I have tried to follow your teachings and give as you gave,
Reminding all to be kind and that it’s wise to behave.

Help me to serve others and bring them your light,
Especially the children, please bless them tonight!

Some have so very little, scarce food for their table,
You know how it feels – you were born in a stable!

Bless all their mothers and fathers with a knowledge that is sure,   The best gift they can give is their                                                                                             love, strong and pure.

That’s the Spirit of Christmas when all is said and done,
Gods gift of love, that came as His Son!

Then back to His mother the child is returned
The Nativity glows as the candle is burned.

In a wink the little old man slips quietly away
Some say he goes up the chimney and climbs in a sleigh.

Whatever the case, His mission is clear
Give unto others, bringing love and good cheer.

He flies into the night and bids us adieu
Doing for others what Jesus would do!

Greg Olsen – 2009

Merry Christmas!

There Are Angels Among Us

Last year I wrote Traditions Make a Family Close. All my life we’ve had a huge Christmas party with grandparents, aunts, uncles and cousins. Tonight the traditional party went on. Family and friends make the holiday special. I dedicate this song to you—for you are the angels among us.

Who are the angels in your life? Below are some of mine.

 

 Live Nativity

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

and… sharing the gift of talents 

Now for the lion hunt!

Technology makes sharing a special talent across the states possible!

 

 

 

 

 

 

 

 

 

 

 

 

Amy, thanks for your photography talent and for sharing your pictures with me.

Thank you Mom and Dad for a great party. You work hard for weeks to get ready. We appreciate you keeping the tradition and providing us with fun times which keeps our family close. You are definitely angels among us!

A Magical Adventure

In 1991, Mark literally slept in a coma through Mother’s Day, Memorial Day and Father’s Day. Not to mention my birthday and our twelve year wedding anniversary. Although he was awake for Independence Day, Labor Day, Halloween, his birthday and Thanksgiving, all those holidays were spent in the hospital for rehabilitation. We were overjoyed Mark would finally be home for Christmas. Last year I wrote what it took to get Mark home for the holidays. It’s one of my hardest, yet happiest Christmas memories so I wanted to share it again with a new twist.

Christmas can be a magical time, when wishes are granted and this definitely was the case for us twenty-three years ago. After eight lengthy 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 request 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. We passed the test and Mark was discharged from the hospital.

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 nightly 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 a place where Mark could live. Our trials were lightened by their skills and hard work. They opened up possibilities for our new circumstances.

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.

Chris Chipping, a friend and former employer of Mark’s, did the electrical wiring for our new addition while another friend, Walt Fisher, did the plumbing. It was a crazy busy home with construction going on for five months until the addition was completed. But, after eight months of living in a hospital — it truly was the merriest of Christmas’s to have Mark finally home.

In 1991 our world was turned upside down, but I learned “a magical adventure awaits those who venture forth.” The magic comes from the love of God, family and friends with a lot of hard work sprinkled in.

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

A Precious Gift

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I love this realization. What a precious gift.

 

The Joy of Acceptance

Layne and Judy Coon are great examples of accepting others. I lived next door to them for sixteen years and also worked with Judy at Zion’s Bank for three of those years. I know Judy as a co-worker as well as a neighbor. I can’t think of another person I know who’s better at accepting others. Maybe it comes naturally to Judy because of her brother, Ricky, who had Down syndrome, Autism and Alzheimer’s. She was Ricky’s primary caregiver for the last sixteen years of his life. Some of those years she was still raising three children. She also helped raise my two children. Our son, Christopher, was best friends with their youngest, Tony. Our daughter, Katie, often played with their older daughter, Becky. When our accident happened, Judy was there for our children after school and whenever needed. Through it all, she had the love and support of her husband, Layne. The two of them are angels among us and can be seen with smiles because of the love and service they give to all.

I learned from them that accepting our situation would allow us to feel joy. By focusing on the positive, we can make the best of any circumstances. Tim Gray wrote a wonderful story about Ricky in 2010, a year before he passed away. Some of it was published last Sunday and this is more of the story.

Judy says she learned patience through her childhood interactions with Ricky. “I think it’s natural for a child to be patient with another child who has problems. It’s just automatic now.”

Judy discovered the best way to help Ricky from watching her parents. Ricky was extremely stubborn and her father was strict with him, but her mother found a better way to reach him. “My mom learned that all she had to do was put her arms around him and love him and he would melt. Ricky would do anything mom asked,“ Judy said. Ricky can often be seen extending both arms out to people, motioning for a hug. Never a hugger, Judy learned to be one for Ricky.

Like most people, Ricky has good days and bad days. The difference is with Alzheimer’s, Ricky’s bad days are beginning to increase. On a good day, Ricky’s facial expressions and gestures are often like a joyful child pleased with something they did. He can’t wait to show what he’s accomplished to anyone in sight, especially Judy. On a bad day, Ricky looks worn out and perhaps just wants to be left alone. Sometimes he cries quietly with a look of inconsolable confusion on his rapidly aging face. Each time Ricky finds Judy all is well again.

Ricky enjoyed doing dishes for Judy. “He would take dishes out of the dishwasher and put them away. But, as his Alzheimer’s has gotten worse, the results were mixed. Ricky started taking cups off the counter that were dirty and putting them away. We started watching for dirty cups and stuff,” Judy says laughing, even though she knows it’s not funny.

“When Ricky was a boy, he could walk for miles and find his way home. He had a really good sense of direction. But now, Ricky has a hard time finding his way to the bathroom and at home he started asking permission to go to the bathroom.” Judy says.

Some interesting facts Tim Gray included in his story:

Down syndrome occurs in approximately 1 in 800 live births, according to the National Association for Down syndrome. People with Down syndrome have 47 chromosomes instead of the normal 46. Characteristics include low muscle tone, a slightly flattened facial profile, and an upward slant of the eyes. Roughly 40 percent of children with Down syndrome have congenital heart defects.

Alzheimer’s affects 50 to 70 percent of individuals with Down syndrome by the time they reach 60 years old, according to the Alzheimer’s Association. The progression of Alzheimer’s in those with Down syndrome takes approximately 8 years, with symptoms so slight it can go unnoticed for years. The average life expectancy for people with Down syndrome is 55 years old.

Autism is characterized by a lack of development in social interaction, language, and behavioral issues, according to the Mayo Clinic. People with Autism often retreat into their own world. They may also repeat words or phrases without understanding how to use them. Behavioral issues sometimes include performing repetitive motions such as rocking, spinning, or hand flapping.

I want to follow Judy and Layne’s example of accepting others. By doing so, one finds joy and can see the true beauty in every person.

Working with Ricky

Over a year ago, Life with Ricky was written by Judy Coon and published on Uniting Caregivers. At that time, her friend and co-worker shared with me a story he wrote for a school assignment in August 2010. With his permission I share parts of his story with you. 

Written by, Tim Gray

Ricky Cromar

At 1:00 p.m. Monday, Ricky Cromar picked up his worn, green Coleman cooler and heads for lunch. By the time he arrives, 25 or so warehouse workers have packed the break room. To reach his final destination, Ricky had to walk down a long narrow hallway past the conference room and call center, bend around two corners, a couple of restrooms and a flight of stairs. Along the way he had to open two closed doors and limp through one that was already opened.

Ricky can’t count the 150-yard trek or compare it to the miles he often walked alone as a kid. But now as a 61-year-old man with Down syndrome, Autism, and Alzheimer’s, it’s quite a trip. Especially when one leg is a few inches shorter than the other and you’re going blind.

“Here you go buddy,” Janelle says, as she places Ricky’s oversized red University of Utah jacket around his shivering shoulders and rocking body. Ricky doesn’t say a word as he flashes an exaggerated grin of gratitude at the twenty-three-year-old shipping supervisor. She’s accustomed to making her way around the 125,000 square foot warehouse and doesn’t mind the 300-yard round trip back to get his jacket.

For those that come in contact with Ricky, it’s a reminder to be thankful for the ability to do the things he struggles with daily. For many, his accomplishments are an inspiration. For Ricky, who often displays pride in the things he does, the walk just gets him where he’s going. Today, like most days, Ricky eats quietly alone. When he needs assistance, or an extra snack, there are plenty of helping hands. But the ones he depends on most are attached to Judy Coon, his sister and primary caregiver for the past 15 years. Judy is the bookkeeper for Pro Star Fulfillment, a shipping and handling firm for infomercials. She shares a 480-square-foot rectangular office with Ricky and he sits at a black metal desk next her.

While Ricky eats, Judy usually shares lunch with Layne, her husband, who is also the V.P. of Pro Star Fulfillment. They generally eat in his office, which is just around the corner from the break room. While they are both involved in Ricky’s care, Judy clearly has the lion’s share.

In a lineup of seven siblings, Ricky is the second oldest, Judy is third. She took the job as full-time caregiver about a year before their dad died in 1996 and eight years after their mom passed away. Growing up, Judy never thought much about Ricky’s condition. “He was my older brother and has just always been there,” she says. Judy would pay him to do her chores, including the dishes. She would then drive him to buy hamburgers, a major passion of his, which started their bond together. As an adult, Ricky still cleans up the kitchen all the time for Judy.

Before work Judy rides a bicycle 30 minutes, which is about the time it takes Ricky to choose a shirt from his closet. As he has developed Alzheimer’s, most things take longer and are often clouded with confusion. He is wearing gray jeans, rolled up the same six to eight inches his mother rolled them up for him as a child and as an adult. That’s Judy’s job now, along with helping Ricky perform other personal care activities most people take for granted, including electric shaving.

Before Alzheimer’s, Ricky was incredibly organized, especially how he placed pants in his drawers and how he hung shirts in his closets. They were all color coordinated. Now Ricky’s drawers are in chaos.

Earlier today, Judy and Ricky made lunch at home together. It’s something they do on days they don’t have to be at work early. “Rick, do you want one sandwich or two?” Judy asks. “Two,” he says, unaware he is flashing a peace sign. Judy gently hands him four pieces of bread she baked,  which Ricky carefully lays out on the oval wooden kitchen table. Sitting down, a careful exercise itself, he spreads peanut butter slowly on one piece, going well over the edges. Unhurried, he spreads Welch’s Grape Jelly on two pieces and puts the bread together, but not very straight. Judy lets him eat them however he makes them. Ricky deliberately places the sandwiches into a plastic container and then into “Box,” the nickname he gave his Coleman cooler. Next, he methodically puts a Yoplait chocolate raspberry yogurt into the cooler. Pop-tarts, one chocolate and one blueberry, are today’s dessert and a Minute Maid drink completes the meal.

At 1:49 p.m. Monday, most of the break room has cleared as the warehouse employees have returned to their work stations. As Ricky finishes the walk back to his office, he stands bent over his desk with a clouded look of concern. Ricky’s chair is missing. Jared borrowed it while he was gone, but Ricky finds it in good hands, sitting next to Judy. Ricky has an hour for lunch. He made it back before his time was up.

“Good lunch,” he mouths, with a wide-grin and raised eyebrows, like he just pulled a rabbit out of a hat. It’s an expression he displays often at Pro Star. Judy understands what he is struggling to say and smiles back.

Judy gives Ricky daily jobs at work, including stuffing DVD’s into small white containers that will ship to customers looking for long-term healthy weight loss. Ricky is also in charge of shredding files, one of his favorite assignments, but he spends much of his days coloring with the same steadfast concentration he displays making his lunch. Jared Starling, CEO of Pro Star, personally delivers a $15.00 check to Ricky every two weeks for his hard work and Ricky lights up.

Ricky takes tremendous pride in his work. Craig Faux, corporate sales manager for Pro Star , wrote, “When I have something going on that is causing me stress or an issue I need to think through for a minute, I go see Ricky.  He stops, but only for a moment, shakes my hand, shows me what he is working on, smiles at me, then says he needs to go back to work. I always feel better when I leave.”

On Tuesday I will share more from Tim Gray’s story.

 

Rekindle the Spark

I am grateful for those who help keep my flame burning and appreciate the joy I feel when I’ve rekindled the spark in another.

Customized Employment

 

In the article last Sunday, Moving in a New Direction, I stated that I feel Mark is better supported in a segregated environment where staff is trained to deal with his and many others’ special needs. However, I realize it isn’t in the best interest for all individuals with disabilities, so I research to find some information on customized employment.

You may wonder what customized employment entails. For clarification I went to  http://www.dol.gov/odep/categories/workforce/CustomizedEmployment/what/ 

“Customized employment is a flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized match between the strengths, conditions, and interests of a job candidate and the identified business needs of an employer. Customized Employment utilizes an individualized approach to employment planning and job development — one person at a time . . . one employer at a time.

Customized employment will often take the form of:

• Task reassignment: Some of the job tasks of incumbent workers are reassigned to a new employee. This reassignment allows the incumbent worker to focus on the critical functions of his/her job (i.e., primary job responsibilities) and complete more of the central work of the job. Task reassignment typically takes the form of job creation, whereby a new job description is negotiated based on current, unmet workplace needs.
• Job carving: An existing job description is modified — containing one or more, but not all, of the tasks from the original job description.
• Job sharing: Two or more people share the tasks and responsibilities of a job based on each other’s strengths.

Less common — though becoming more established throughout the country — is Self-Employment as a form of Customized Employment. Self-employment allows for an individual to receive assistance in the creation of an independently owned small business (typically a micro enterprise, under five employees) based on the strengths and dreams of an individual and the unmet needs of a local market while incorporating the individualized planning and support strategies needed for success.”

Under the direction of federal government, Centers for Medicare and Medicaid Services (CMS),the State of Utah Division of Services for People with Disabilities (DSPD) is developing a plan to help transition day programs, to better support individuals with disabilities in an integrated setting. To help in this transition, Ability and Choice Services is looking to hire people familiar with the Utah Division of Vocational Rehabilitation Services. In addition, people with job coaching experience and training would be very valuable. If you or someone you know is interested in these positions, please apply online at www.abilitychoice.org.

Ability and Choice Services are also looking for new work opportunities for the people they serve.  If you are aware of an employer who would consider a customized employment opportunity, please contact eric@abilitychoice.org. Thank you in advance for your consideration!

I also found two interesting and encouraging videos which are worth the watch.

Solutions for Employers

 

Creating Opportunities and Solutions

 

I hope this information is helpful and encouraging for those individuals who want to work, which has been so important for Mark’s self-esteem. I believe customized employment can be a win/win situation for both the employer and the employee and I hope more employers will consider how they might benefit from customized employment.