A Blessing in Disguise

There 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 can 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 appeared to bother me more than Mark, who is accepting and understanding of others curiosity. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried our children 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.

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.

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 dream of a genie to lighten the work load, but rather one who could help us find work for Mark. It would be nice if 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.

Happy Thanksgiving

How to Live in Thanksgiving Daily

I’ve noticed people who have a gratitude attitude are the happiest kind of people in the world. It’s a quality which makes them more likable and at peace with themselves. Think about a happy person you know. I’d be willing to bet they are grateful for what they have, look for the best in all circumstances and are a joy to be around. They tend to make others feel better about themselves. Where there is an abundance of gratitude, there is happiness.

Now, think about an unhappy person. Are they resentful and bitter because life didn’t turn out the way they thought it should? You might hear them say something like, “If only I were smarter, had a new car, a college degree or a different job, spouse or parent, then I could be happy.” There are many good reasons for us not to be happy and it’s easy to blame our unhappiness on the things we lack in life. The more we focus on the things we don’t have, the more unhappy and more resentful we become. The lack of gratitude can make us miserable. I know from my own experience I am much happier when I appreciate what I do have rather than concentrating on what I don’t have.

My best example of someone who lives in thanksgiving daily is my husband, Mark. I don’t know of another person who is more grateful, happy and gives more joy to others. I also don’t know anyone who has more reason to be bitter, resentful, or has more cause for deep sadness due to loss of abilities, a beloved career and painful health issues. I know I am lucky to be a caregiver to one who has such a grateful heart. I know many caregivers who are not as fortunate. The inability to appreciate others causes criticism of efforts and does not allow one to acknowledge another’s contributions. My life with Mark is a happy one, largely because he lives in thanksgiving daily. Three ways he shows his appreciation are:

Says “Thank You” Often — Two simple words, yet they are so powerful! Hearing those words is a great payment for the care or deed that is done. Joy and appreciation is felt when I hear those words and it makes my efforts worthwhile.

Writes Thank You Notes — Letters of appreciation are a keepsake and tangible evidence of gratitude for what has been given or done. I have hundreds of such notes written on regular lined paper in three ring binders, which I treasure.

Compliments — He notices the work that goes into a good meal and lets me know how much he enjoyed it. He tells me when he thinks I look nice or likes my haircut or outfit. He is constantly looking for and stating the positive.

I’ve learned from Mark that expressing appreciation brings happiness not only to yourself, but those you are grateful for. It also lessens stress and anger, which makes you a healthier person. When we focus on our blessings, we see more blessings because our attention has been turned in a positive direction.

Try making a gratitude list and read it when you’re sad and feeling ungrateful. Some general ideas to help you get started:

• List people
• Physical abilities
• Material possessions
• Spiritual gifts
• Nature
• Things about today
• Places on earth
• Modern-day inventions
• Foods you are grateful for.

How long can you make your list?

How would your life improve if you lived in thanksgiving daily?

Giving Thanks

It’s that time of year when we are focused on giving thanks, yet every day should be a day of thanksgiving. But it’s hard to give thanks in all things. I haven’t thought of giving thanks for a car accident which caused my husband to be comatose for three months and hospitalized for rehabilitation for another six months. I’ve not said I was grateful for thirteen surgeries and years of therapy he’s had to have due to his traumatic brain injury. I’ve never thought I was thankful for an accident that caused him to lose his ability to work as a master electrician, seemingly wasting four years of apprenticeship schooling plus two years of journeyman experience and testing before earning his master’s license. It’s difficult not to envy people who can travel and do other fun activities as they please, while it’s problematic for us to visit the neighbor next door or a friend’s home due to stairs and a wheelchair that doesn’t climb them on its own. Life is complicated and unsettling when you live with seizures and have the worry of blood clots due to the inability to move freely. The list of concerns and complaints could go on, but I’ll spare you more grief.

When I think about what we have missed out on and the unfulfilled expectations of life, I’m unhappy. I realize I need to change my focus and count my blessings. I should not compare my life to another—just my own. How far we have come and what blessings we have gained while overcoming our struggles. I am happiest when I recognize and appreciate what I have.

I am thankful for life and realize every day is a bonus day and must not be taken for granted. I appreciate the education of doctors, nurses and therapists who have developed the skills to help heal and improve our health issues. I’m grateful for the hard work and progress Mark has made through surgeries and years of therapy, which has enhanced our quality of life.

Because it’s challenging to travel, we find fulfillment in simple things such as gardening, canning, reading, writing, playing games, listening to music, putting together puzzles and other activities at home. I’m grateful for our comfortable, wheelchair accessible home, which always gives me something to fix up or improve and the space I need to be able to work at home. I appreciate my employment in property management which enables me to pay for all the necessary things in life. I am fortunate to have wonderful bosses and friends such as Steve and Rick. I appreciate all they do for me on in our business as well as my personal life. I am also blessed to live with Mom and Dad. I am grateful for their continued love and support and I’m thankful we can help each other in all things by living together.

I appreciate my children, siblings, nieces, nephews, cousins, aunts and uncles, who I know I can count on for help at anytime or in any situation. They are the foundation for everything we accomplish along with the love and support of neighbors and friends. Many people volunteer their precious time to help us.

With the loss of some abilities we have gained others. I am grateful for every course in life, good or bad, which gives us knowledge that can never be taken away or become useless. Our self-confidence improves as we realize we can overcome grueling circumstances. Our compassion towards others has grown, along with the ability to understand their needs and our desire to help has intensified. We no longer take for granted the human adaptability and the drive to conquer challenges. We are inspired by people’s good will and how they strive to do their best. It gives us hope and the desire to do likewise.

We are blessed by many people—family, friends and neighbors who give service, love and support to us. Our need to give back is the driving force for writing our story and developing Uniting Caregivers. This recent passion has brought new friendships through writing and caregiver’s support groups, along with readers and participators of this blog. I have learned so much and have gained from their experiences. I am grateful for the influence of other writers and their encouragement in my own writing endeavors. I appreciate my sister-in-law, Dianne, who edits nearly every article before I publish it to make sure I’ve punctuated correctly and that my writing makes sense.

If you are reading this, I am grateful for you! I appreciate your feedback, whether it’s done with words or the click on the Like button. In just over a year, Uniting Caregivers has had several exceptional guest authors participate and nearly 16,000 views. I hope what is written has helped you find hope and encouragement in your trials. I have truly been blessed in my life’s journey and writing about our experiences manifests those blessings to me. So I must say—if I’m grateful for everything I’ve listed above, I need to be grateful for a terrifying car accident which switched our life’s track dramatically and helped me understand all that I’ve written and hopefully has changed me for the better!

Every day should be a day of thanksgiving. When I focus on my blessings I am happier and life is easier. Being grateful makes what I have more than enough.

Ultimate Freedom

The Importance of Being Assertive

Positive assertive communication is based on mutual respect, an attitude which defends your rights without hurting those of others. Being assertive shows that you’re willing to stand up for your interests and express your thoughts and feelings. It also shows that you’re aware of the rights of others and are willing to work on resolving conflicts. As an example see Experience is a Great Teacher.

When using passive communication you may seem to be shy, overly easygoing, or avoiding conflict. Why is that a problem? Because the message you’re sending is that your thoughts and feelings aren’t as important as those of other people. When you’re passive, you give others the license to disregard your wants and needs, which can cause an internal conflict because your needs came second. The internal conflict can result in stress, resentment, anger, or feeling you’ve been victimized.

When using aggressive communication you may come across as a bully who disregards the needs, feelings and opinions of others. You may appear self-righteous or superior. Very aggressive people humiliate and intimidate others and may even be physically threatening. You may think being aggressive gets you what you want, however, it comes at a cost. Aggression undercuts trust and mutual respect. Others may come to resent you, leading them to avoid or oppose you.

By being assertive you gain self-confidence and self-esteem, which helps earn respect from others. It improves your communication and decision making skills. Recognizing and understanding your feelings and communicating them assertively creates honest relationships and win-win situations. It’s a behavior where a person neither attacks nor submits to another person’s will, but expresses beliefs. Assertive is half way between passive and aggressive and is the ideal method of communication. It also helps with stress management, especially if you tend to take on too many responsibilities because you have a hard time saying no. Some people seem to be naturally assertive, but if you’re not one of them, you can learn. Here are some tips I found from the Mayo Clinic website to help you become more assertive:

• Assess your style. Do you voice your opinions or remain silent? Do you say yes to additional work even when your plate is full? Are you quick to judge or blame? Do people seem to dread or fear talking to you? Understand your style before you begin making changes.
• Use ‘I’ statements. Using “I” statements lets others know what you’re thinking without sounding accusatory. For instance, say, “I disagree,” rather than, “You’re wrong.”
• Practice saying no. If you have a hard time turning down requests, try saying, “No, I can’t do that now.” Don’t hesitate — be direct. If an explanation is appropriate, keep it brief.
• Rehearse what you want to say. If it’s challenging to say what you want or think, practice typical scenarios you encounter. Say what you want to say out loud. It may help to write it out first, too, so you can practice from a script. Consider role-playing with a friend or colleague and ask for blunt feedback.
• Use body language. Communication isn’t just verbal. Act confident even if you aren’t feeling it. Keep an upright posture, but lean forward a bit. Make regular eye contact. Maintain a neutral or positive facial expression. Don’t wring your hands or use dramatic gestures. Practice assertive body language in front of a mirror or with a friend or colleague.
• Keep emotions in check. Conflict is hard for most people. Maybe you get angry or frustrated, or maybe you feel like crying. Although these feelings are normal, they can get in the way of resolving conflict. If you feel too emotional going into a situation, wait a bit if possible. Then work on remaining calm. Breathe slowly. Keep your voice even and firm.

Four more tips that I want to remember for assertive communication:

• Be respectful and kind.
• Use specific examples, don’t generalize.
• Provide objective and pertinent insights.
• Don’t judge or attack the others.

What tips do you have on assertive communication? What has been your experience with doing so?

Experience is a Great Teacher

While I appreciate the years of education a professional caregiver has, it’s still really hard for me to leave Mark at the hospital. I realize they can be an expert in their field working with people who have a wide variety of disabilities and illnesses. They may have the education and the skills of an excellent doctor, nurse or therapist, but that doesn’t make them an expert on the person they are treating. Even though I know this, it’s difficult to stay calm when they don’t know how to do something which seems obvious because it’s common to me such as transferring, bathing and the other daily tasks of caring for Mark.

The memory of three hospital admissions in 2013 for blood clots is still etched perfectly in my mind. They didn’t know how/or want to transfer him so he was bedridden for a few days. I watched him get weaker as they treated him like he could not move. I asked the doctor if the nurses and aids weren’t getting him out of bed because of the blood clots. He said no, in fact, lack of movement brings on blood clots. I asked him to please order Mark some therapy, which he did. To my surprise, the therapist wheeled in a bedside lift.

“I don’t use a lift to get him up,” I said.

“Well this one will not only help me get him up, but he can walk with this lift stabilizing him.”

I watched anxiously to see how this would work. The harness was complicated and appeared to be new to the therapist. Mark was in a weakened state and this method of getting up took little effort on his part. He wanted to help, but was confused by this foreign process. It took nearly thirty minutes to get him in an upright position, leaving little time for walking.

“He can walk with a walker,” I stated.

The therapist looked at me like I was crazy.

“I will bring it tomorrow and we’ll show you,” I said and the next day, I did just that.

With assistance from the therapist and me, Mark took steps the length of the hospital room. The therapist was impressed and amazed he could do it. I was shocked at how fast he had weakened because he usually walked better and much further.

It took the full month of August 2013 in a rehab center to build up his strength again. This hospital experience taught me I needed to let them know immediately Mark’s capabilities and I took the walker to the rehab center.

With the bitter taste of last year’s experience still fresh in my mind, I was worried about how this year’s hospital stay would go and decided I needed to be more assertive with the professional caregivers. Shortly after we entered his room and met the nurse and aide who’d be caring for him for the next two days, I asked, “Would you like me to show you how I transfer Mark into bed?”

“Sure,” they replied in unison.

Standing directly in front of him, I lifted his foot and I swung the leg rest to the side to move it out of the way. I followed the same routine with the other foot while Mark unfastened his seatbelt. With his feet on the ground and carefully positioned with the foot closest to the bed out in front of the other, I placed my feet in front of his to hold them in place. I wrapped my hands over his shoulders and tucked a few fingers under his arms. With my knees pushing against his legs, I pulled upward with my arms as he stood.  He’s 6’2” when he’s upright and his height usually surprises people when they see him stand for the first time. I used my legs to help direct him as we pivoted to the side of the bed and I lowered him to a sitting position. As he lay back, I picked up his legs and swung them onto the bed.

“You do this by yourself every day?” the nurse asked.

“Yes. It’s really not that hard after the initial pull. I use my knees against his to help him straighten upward.”

“It looks hard; you must be really strong,” she said.

Some people may take that as a compliment, but I felt like she was saying, that’s too difficult for us to do. I left for work worried that he would be confined to the hospital bed all day long and when I returned at night my worry was confirmed. Someone had even written on the white patient information board in his room “bed rest”.

My blood nearly boiled, but I took a deep breath and asked who wrote the “bed rest” order. No one knew, so I wiped it off the board. “He can lose strength so quickly and with me being the only one to transfer him at home, I need him to stay as strong as possible.”

“You have your routine and you’ve been taking care of him for a long time. It’s second nature to you, but it isn’t to us,” the nurse said.

I knew she was right, it is second nature to me and not to them, but I was also right, he needs to move to keep up his strength. By both of us being assertive and expressing our concerns, we came to an understanding with a plan for physical therapy while he was there. I didn’t necessarily like that they wouldn’t get him up and it’s hard for me to understand that some nurses and aides are not comfortable doing transfers, but we found some middle ground. I realize that rehab centers are different than hospitals where the majority of the patients are capable of walking or transferring into a wheelchair with minimum assistance and transferring Mark does take more assistance. However, I do it every day so it’s an obvious part of caregiving to me.

It’s not always easy to express what I think and feel in a positive way, creating mutual respect, when I view things differently than another. I don’t want to be passive by giving into what I don’t believe is right. If I don’t express my feelings, I get upset inside and after time it can build until I explode or become aggressive by yelling or being sarcastic. I don’t want to be disrespectful of others and their opinions. Being assertive is the ideal middle ground—where I want to be. Sharing what I have learned through my experience with professional caregivers can be intimidating and difficult. Tuesday I’ll share some great information I found on how to be assertive without offending another.

What positive experience have you had sharing what you know in a difficult situation?

Rebuilding Life From Within

Three Ways to a Wonderful Life

Tomorrow, November 12th, is Mark’s birthday and as I searched the internet looking for something which describes and honors him, I came up with these three things he does daily to make his life and mine wonderful.

1) Have a sense of humor.
Mark has a great sense of humor, which makes living with him both enjoyable and entertaining. He makes me laugh in stressful times. No matter where we are he knows how to put strangers at ease with humor. When we left the hospital Friday, two nurses said, “I’m sure going to miss you here. You made me laugh and brought joy to my day.” He was going through a difficult, two day preparation before a colonoscopy, but still made the nurses laugh.

2) Never quit on what you want to achieve.

Mark is a winner because he never quits. He keeps working on and believing in his abilities. His perseverance is an inspiration to all who know him. He works hard at everything he does and when he doesn’t accomplish what he’d hoped to, he works at not letting it get him down. I’m proud of his determination and positive attitude. I consider myself a winner also because I’m married to him.

3) Choose to be happy.

 Mark definitely chooses to be happy. He has good reason to be sad and disappointed in life, but he chooses not to be. He forgives and forgets thoughtless comments. He’s never demanding and always appreciative of all that he has. He’s a joy to take care of because he has such a grateful heart, which makes it all worthwhile.

For fun pictures of Mark in his youth click here.

What makes your life wonderful?  I’d love to hear your ways.

I hope you have a great day which leads to a wonderful life!

The Inside Story

I’ll be willing to bet no one gets excited about having a colonoscopy. A look inside with a scope doesn’t sound fun, but no food for a day and a prescribed drink which is meant to give you diarrhea sounds even worse. It’s unpleasant enough when you can get yourself to a toilet, but when you have to count on someone else to get you there…it’s horrifying for you and your caregiver. Ten years ago Mark and I were unfortunate to have such an experience. After a dreadful day and night of cleansing and no sleep for either one of us, we were sent home for another day of it because Mark was not completely cleaned out. That dreadful day turned into two with the end (no pun intended) result of a completed colonoscopy with two polyps removed and the recommendation to come back and repeat the procedure in five years.

The years passed quickly and I still shudder at the memory of it. I didn’t want to ever relive that experience, so we didn’t follow the recommendation. However, for the past five years it was always in the back of my mind, haunting me because I knew it was something we should do for the sake of good health.

Last year while Mark was hospitalized for blood clots, a shiver ran down my spine when the doctor asked when Mark’s last colonoscopy was. To justify my guilt for not taking him in as recommended, I retold how horrifying the cleansing experience was for both of us. He said, “You know, under these circumstances they can do the preparation in the hospital.”

I thought, why wasn’t I told this before or even after the previous colonoscopy? I guess no one thought about how useful that information would’ve been, so I just said, “Great, let’s get it done.”

“We can’t do it now with the blood clots and the anticoagulation medicine (warfarin) needed to treat them. He will have to wait at least a year before we can consider even taking him off the warfarin long enough for the procedure,” the doctor said.

So for the past year I’ve been worrying about this procedure and the ramifications of putting it off for so long. A few weeks ago Mark had another doctor’s appointment and ultrasound on his leg where the blood clots started. There was still evidence and scaring of the blood clots, but the doctor felt like Mark would be fine to be off of the warfarin for five days prior to the colonoscopy. Before we could change our minds, it was scheduled for November 7, 2014.

Mark was able to have a light breakfast on November 5^th. One piece of toast and two eggs were allowed. At 11:00 am he was admitted to the hospital for two days of no food and drinks mixed with the intent to clean him out completely. Most of us only need one day, but due to our past experience and his limited activity, he was scheduled for the needed two days. Finally, the waiting and preparation was over and we were anxious to get this procedure behind us. With great anticipation, I followed the nurses as they pushed Mark in the hospital bed down to the procedure room. The doctor explained it should only take a half hour to do the colonoscopy. An hour later the clock ticking became louder and with every tick my worry increased to a higher level. An hour and a half later the colonoscopy was completed with one large, but assumed noncancerous, polyp was found and removed.  After the biopsy is analyzed, the doctor will call us and confirm the results.

“In all my practice, Mark’s colonoscopy was the hardest procedure I’ve ever done. His colon is elongated and floppy due to his inability to be mobile, making it hard to get the scope through.  We tried three different scopes and still couldn’t get to the end of it, meaning we didn’t see the last six to eight inches of his colon. I’m not sure when I recommend we do this again. Let’s wait until we get the results from the biopsy and then we can discuss when you need to come back.”

I don’t know if I should feel relieved, but I do. It’s over and I believe the doctor is about as anxious as we are to do it again.