Where to Find Support

When Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

I still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

Our Happy Place

Two months ago today Mark had his second total hip replacement surgery. Out of the three most common replacement surgeries, hip, knee and shoulder, we’ve been told the hip replacement is the easiest to recover from. We saw many people during his seven weeks of in-patient rehab days who healed a lot quicker than Mark, even with a knee or shoulder surgery. It’s hard not to get discouraged. This is when I realize having a short-term memory problem is a blessing that Mark inherited from his traumatic brain injury (TBI). He lives in the moment, which is what I’m trying to learn how to do.

The pain of moving joints, muscles and tendons which have been cut and were not in good condition beforehand seemed at times unbearable. Mark’s ability to make his body move is difficult with his TBI under normal conditions, but throw a surgery in the mix and it’s nearly impossible. However, he persistently works hard to please the therapists and me, doing all that is asked of him, even when he doesn’t feel like it. He has made remarkable progress for his circumstances. When I liken his abilities to before surgery and not another patient, I am thrilled with his progress.

Often right before or during a painful stretch, Mark’s therapist would say, “Go to your happy place.” To that Mark would reply, “My happy place is any place other than here.”

Wanting to be helpful, I started naming vacation spots which hold wonderful memories. “How about the beauty of Zions, Bryce and Grand Canyon; remember the thrill of seeing the parks for the first time on our honeymoon?”

“I just want to go home.” Mark replied.

My thoughts moved to the gorgeous State of Washington where Mark grew up. “I love Deception Pass and the San Juan Islands. I look forward to our next trip there, how about you?”

“Home is my happy place so take me home.” Mark pleaded as the painful stretch continued.

As a wife and caregiver, I want nothing more than for Mark to be better. My world has revolved in this endeavor for twenty-five years next month. In the first few years after his TBI, it was a race against time because it was believed that the greatest amount of progress would happen in the first year and then slow down and plateau within the following couple of years.

Subsequent years we continued seeking for improvement with foot surgeries on both feet to correct foot drop and toe tendons cut to release curl to make standing possible. Also he’s had previous hip surgeries to clean out the joints for improved movement and a Vagal Nerve Stimulator (VNS) implant to help control his seizures along with the various surgeries in the beginning which saved his life. All told, Mark has had fifteen surgeries since the car accident.

Mark turned sixty last November so the path of our journey seems shorter than it used to, which adds a new dimension for recovery importance. It’s evident to me that striving for improvement is a lifetime pursuit. But this is not the life we’d planned and there is a certain amount of grieving that happens over the loss of dreams and honestly some dreams are harder to bury than others.

I’m human and some days I run out of patience and energy. I want Mark to be better now, but recovery is still happening. We are no longer in an in-patient facility, but are now engaged in out-patient therapy. I’m finding it hard to get into a regular routine with the interruptions of driving to and from the needed therapy sessions daily, preparing meals, managing prescriptions and doing the regular household chores. These are the responsibilities I was relieved from while Mark was at the rehab center. Don’t get me wrong, I’m happy to be home, but I’m looking forward to these common tasks becoming second nature to me again. Feeling overwhelmed makes me wish for a far-away trip, a vacation from health concerns and worries. However, the TBI and physical limitations go with us no matter where we are—so there’s really no escape.

Backyard – My happy place.

At the same time, I’m grateful to be home where we have our privacy and some control over our own time. I appreciate the beautiful place where we live, which was custom built to meet Mark’s needs. For us it is the most comfortable and peaceful place on earth, designed to make our life easier. The openness and wide hallways make it possible for Mark to maneuver in a wheelchair. The large shower which Mark can roll right into and a bathroom sink he can roll under creates independence. Even outside we have cement sidewalks around the backyard so we can enjoy the outdoors together. We are fortunate to live in such a house and we have awesome neighbors too. Whenever I feel sad about the places we can’t go, I remember, there is truly “no place like home.” We are grateful after nearly eight weeks of being away to finally be back in our “happy place.” We couldn’t be more thrilled that the surgeries are finally behind us and given a year to heal, I’m certain Mark will be entirely pleased with his hip replacements.

Where is your happy place?

There’s No Place Like Home

Image credit: http://www.sundanceresort.com/summer/

Nestled in the gorgeous Wasatch Mountain range is the beautiful Sundance resort. For the past several years my brother Steve has pampered us along with our parents and other siblings to a delicious dinner and outdoor theater tickets. Just a few days before Mark’s surgery in July, we found peace and entertainment surrounded by the huge pine trees as we enjoyed the Wizard of Oz. The storyline and music were perfect timing for the turmoil ahead. A few tears streamed down my face as Dorothy sang, Somewhere Over the Rainbow. The promise of blue skies, dreams coming true and troubles melting like lemon drops gave me hope for a brighter future. I’ve reflected on the story often through Mark’s recovery.

Image credit: http://www.sundanceresort.com/summer/

In the classic story written 77 years ago, of Dorothy and her dog, Toto, being caught in a tornado’s path which took them to the magical Land of Oz where life is strange, but beautiful. Wishing to return home, she is helped by the Good Witch of the North, but in trouble with the Wicked Witch of the West. She follows the yellow brick road to Emerald City where the great wizard lives in hopes he can take her back to a familiar way of life with the people she loves. In her travels she meets a scarecrow who wants a brain, a tin man who yearns for a heart and a cowardly lion who desperately needs courage. They all hope the Wizard of Oz will help them before the Wicked Witch of the West catches up with them. There are many twists and turns in their journey to meet the wizard who everyone says can help Dorothy return home and grant her new friends their wishes for a brain, heart and courage.

It’s common to hear in the halls of a rehab center, “I want to go home.” I’m quite sure it is the sentiment of most patients and the motivation for everyone who works hard in therapy. Some landed in rehab after surgery, while other storms such as a stroke, illness or loss of limb brought them there. All have left the comfort of their home in an effort to improve or save their health. The physical condition cyclone has taken each of them to a life that’s strange and unfamiliar. It’s made beautiful by a caring environment and other patients who understand the pain and share the goal of recovery. Wishing to return home, each is helped by good doctors, nurses, aides and therapists. The patients follow their advice like Dorothy followed the yellow brick road in hopes to get the help they need to return home. In real life there’s no Wizard of Oz who can magically get you home with all your goals achieved. Instead it takes persistent and painful work. Just as the scarecrow, tin man and lion found out, most patients learn from the journey they have within them what it takes to obtain their desire.

Dorothy was right, there’s no place like home and on Friday we were finally able to return. There is nothing more restful than sleeping in my own bed. However, I appreciate wonderful places like Rocky Mountain Care when we’re not capable or safe to be home. I’m filled with gratitude for therapists who work a bit of magic with their knowledge, and a caring staff that is all heart. I value the friendships we made there and am motivated by their life stories and courage. The environment there is very different from home, but it’s made beautiful as people improve and friendships form.

It’s hard to say goodbye to people we may never see again, who have inspired us in our lowest hours and have been with us daily in the pain and success of recovery. We return home changed by our experience and blessed by many people’s influence.

I am grateful to Steve for a wonderful annual summer tradition and for this years play which reminded me that Somewhere Over the Rainbow, skies truly are blue.

Hidden Blessings

Everyone can benefit from the encouragement of a promoter and believer in their abilities. I’m grateful for the activists in my life and therefore try to reciprocate by being supportive of others, especially Mark. Being his advocate is a responsibility I take seriously. I’ve witnessed the difference it makes not only in ours life, but in other’s lives as well. It boosts one’s drive to improve and changes their therapy and even the care they receive. Likewise, therapists and professional caregivers buoy up when they know there is a supporter on board. Being an advocate can feel heavy at times and weighs me down, but I see the blessing of improvement which comes from it.

Surgery or illness always brings more caregiving involvement due to the strength loss it brings and for Mark, another issue is his speech. Many people don’t take the time to understand him or they feel awkward when there is miscommunication. Some people are embarrassed to say they couldn’t grasp what he was saying. Mark realizes his speech is impaired and he is not upset by having to repeat himself. He’d rather do that than to be ignored or have someone not comprehend what he’s saying. With uncomfortable and pleading eyes others often look to me to interpret what he just said. Therefore, I feel the need to always be by his side to love, protect and encourage others to understand him. I see the blessing the blessing that comes from communication and when others get to know Mark’s fun personality.

I get lots of advice about what I should or should not do and I have to remind myself it’s generally coming because that person cares about our well-being. Some people think the level of dependency is unhealthy and wrong, while others praise the assistance. Ultimately, I’m just doing what I feel is best, which isn’t necessarily what I prefer to do. As most caregivers know, it isn’t about me. One of the blessings in all this is as I help Mark, my love for him grows and when I come to his aid with the right attitude, it becomes an honor to do so. Not all people can be caregivers, but I’m fortunate to have the health, strength and support which enables me to do so.

This year has brought some unusual difficulties in my caregiving journey. Starting with my large hernia, which was an easy fix with the obstacle being the six-week recovery time and finding someone dependable to care for Mark. Originally, I was in hopes to have my surgery right after Mark had his hip surgery. I thought it made perfect sense for me to recuperate while Mark was in the rehab center. Due to complications, Mark’s hip surgery was postponed and my recovery plan was ruined. Thank heaven for family and friends, especially a daughter who was willing and capable of moving in for the recovery time. It turned out to be a great blessing for all of us, bringing us closer together as we worked through those weeks.

After my recovery, Mark was approved and scheduled to have his surgery. Less than a week before the long-awaited date we were informed he would have to go a larger facility with an ICU due to the risk of complications. It became more frustrating when we were told the surgery date was now uncertain because they weren’t sure when they could fit the four-hour surgery on the bigger hospital’s schedule. Another hurdle was the surgeon wouldn’t start the surgery late in the afternoon. We anxiously waited until the day before surgery to get word whether Mark could be fit in or not. Fortunately the surgery was able to take place on the original scheduled date and having it done at the larger hospital proved to be a blessing. Mark needed one radiation treatment to hinder the excessive bone growth from recurring. This hospital has an oncology center so Mark didn’t have to go far the day after his surgery for the treatment.

I was disappointed when I learned Mark’s insurance plan wouldn’t allow him to go to the rehab center of our choice. I appealed to the insurance company and the doctor wrote a recommendation for an acute rehab center. There was no persuading the insurance company. Saddened by their decision, I searched for an alternative. I learned that not all rehab centers allow a family member to stay overnight with their loved one. I understood their concerns, but for our situation, I couldn’t abide by the rule. Although Rocky Mountain Care discourages overnight stays, they do allow it, so here we are. Another benefit of this place was that Mark had rehab here two years ago after three hospitalizations for blood clots. The admitting personnel and rehab coordinator were familiar with us. It has proven to be another blessing that we are here. We love the therapists. They work hard to help Mark gain improvement. We appreciate their knowledge and the equipment available. The in-house doctor, nurses and CNA’s are helpful. It may not have been my first choice, but I believe he is getting the best care possible.

Some days it feels like I’ve had more than my share of things not turning out the way I’ve planned, hoped for and worked diligently towards. However, when I look back on the end result, I realize it worked out for the best. I’m feeling fortunate as I recall these hidden blessings and realize there are many who support us. I’m grateful for each one of you and especially for our greatest advocator. He pleads for us and knows what is best.

I Need Thee Every Hour

Right hip replacement with extended rod for added stability.

Left arthritic hip with calcium buildup preventing free movement.

It’s been a hard couple of weeks.  We expected the healing process from a total hip replacement would be difficult, however, the distinct difference between expecting and knowing is living it day by day, which makes the actual experience a reality.

As I was searching for the perfect thought to go along with my last story and tip concerning true grit, I found a quote from John Wayne. “Life is tough, but it’s tougher when you’re stupid.” I chuckled when I read it, but it haunted me through our “tough” week.  I couldn’t stop wondering if we took a ridiculous chance or made a senseless choice in choosing major surgery for Mark.

We took months to decide. Vacillating back and forth nearly drove me crazy. When I was reluctant, Mark was assured and visa-versa. The stiffness and painful ache was bound to get worse over time and with the results of his bone density test, we realized if he was going to have the surgery we needed to do it now. After much prayer and discussions about risks and concerns, the surgery felt like the best solution for helping Mark to sit comfortably and move better as well as making it easier for me to transfer him in and out of his wheelchair. We were hoping this would bring an improved quality of life for both of us. I’ve wondered if the uncertainty was a sign we shouldn’t go through with the surgery, yet we couldn’t let go of the a hope for improvement.

Since the day of the car accident, I’ve felt responsible for Mark’s care. It isn’t because I want to be in control of his life, but while he was in a coma, I was forced into that position.  It overwhelms me to be in charge of another person well-being and I guess I could have shirked from the responsibility, but my love for him wouldn’t allow me to do so.  I hated the circumstances and would have loved to escape from having to make many decisions—however, obligation felt like the right choice.

In a rehab center, it’s easy to notice another person who’s had the same surgery near or on the same date who’s healing and progressing at a much faster pace.  Some of the patients here who came about the same time we did have already gone home or are getting ready to do so in the next week. It isn’t that they’ve worked harder or more diligently, but they had a physical advantage to start with.

I’ve wondered if we made the right choice or if we just made our life harder. Sure, Mark’s gained movement, but he’s lost strength and so far the improved movement doesn’t make up for the lack of strength, which makes transfers even harder than before. He’s far from ready to come home and that’s discouraging. We’re praying he’ll turn a corner soon and his recovery will speed up, but in the meantime, I’m trying to be patient and positive.

Every Sunday they have a short church service at the rehab center for anyone who’d like to participate. Today the opening hymn was, I Need Thee Every Hour. I fought the tears as the words seemed especially significant and reminded me how much I needed God to calm the raging storms in my life. Noticing a few others who also had tears, reminded me that our anguish can either humble us or make us bitter.

Looking around the room, I saw others with more serious problems than my own. Realizing my fortune gave me strength and desire to lighten their loads. It amazes me what some of these people endure with a smile. They have taught me I can focus on what’s right or what’s wrong in my life. It’s my choice.

Life is hard, and making stupid choices makes it harder. Sometimes I’m right and other times I’m wrong, but I’m always trying to do what’s best. For me life is easier and I have more confidence when I rely on the Lord.

A Man With True Grit

August 2015, Mark in rehab

Here we are again at a rehab center, eleven days after surgery. Since I’ve watched Mark battle rehabilitation for more than twenty-four years, the pain is both heartbreaking and tiresome. It’s difficult not to question why it has to be so hard and painful. One of the benefits of being in a care facility is that we are surrounded by people with similar struggles. Most of the patients here are overcoming a knee or hip replacement, but a few have an even more serious struggle like bone cancer or a stroke. As I get to know each patient here, my heart goes out to them and as I watch their progression in conquering their health challenges, I rejoice. We are surrounded by people with true grit.

Mark was not a perfect candidate for a total hip replacement so he had several tests to determine whether it was a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine and osteopenia (a precursor to osteoporosis) of the hips. The results were discouraging and overwhelming. The bone density test reveal he was a high risk for a break. What should we do and when do we give up? These two questions took months to answer.

The orthopedic surgeon gave Mark only a 50% chance of the surgery improving his condition. Mark replied, “I’ve beaten lesser odds,” and decided to go through with a total right hip replacement despite the risks. Mark’s continuing optimism and determination for betterment is one of the reasons why I love and support him so much. He’s taught me you don’t have to be a cowboy to be a man with true grit, which has become my favorite way to describe him.

If you’re old enough, you may remember John Wayne in the 1969 movie, True Grit. There was a remake in 2010, but I preferred the original western of a totally fearless, one-eyed, pot-bellied U.S. Marshal, Rooster Cogburn, who was hired by a determined young girl, Mattie Ross to find the man who murdered her father and fled with the family savings. Rooster was cantankerous and drank too much, but his shooting ability was flawless. He was known as a man with true grit.

The scene that keeps running through my head is the one where Rooster rides his horse into an open area and faces alone a gang of four outlaws he’s been tracking down for days.

One of the outlaws shouts at Rooster, “What’s your intention? Do you think one against four is a dog-fall?”

“I mean to kill you in one minute or see you hang in Fort Smith at Judge Barker’s convenience. Which one will it be?” Rooster haulers back.

“I call that bold talk for a one-eyed, fat man.”

“Fill your hands…” Rooster yells while putting the horse’s bridle reins in his mouth, drawing his rifle in one hand and his shotgun in the other as he charges towards the four men, shooting with both guns.

Despite the unlikely odds, he does take all four down.

This comparison may seem a little irreverent or uncouth, but it’s what goes through my mind as I watch Mark combat rehab. He boldly confronts each challenge using every ability he has. He fearlessly fights for improvement and gives little thought to it taking him down. He is indeed a man with true grit. However, I must add he’s much better looking than Rooster Cogburn and his language, manners and conduct are nicer too.

We all have something to overcome and having true grit helps us get through it. Right now I’m surrounded not by cowboys, but warriors with true grit and I’m particularly fond of the one I’m married to. Just like Rooster did, I believe Mark will come out the winner too.

Good, Better, or Best

As caregivers, we have many decisions to make in behalf of our loved one’s best interests. The responsibility weighs heavily as we ponder not only what is good, but what is best. How do we know if it’s the best choice? Sometimes we don’t even realize we have choices. For example, it never occurred to me that I could transfer Mark from one hospital to another without him being released. I admit I was young and inexperienced, however, when I was told I had the choice, I didn’t take the decision or the responsibility lightly. I knew I needed to move Mark closer to home because the one hour drive each way was difficult to make daily. My brothers were taking turns on weeknights to stay with Mark so I could go home to be with the kids. It was hard to be away from Mark when I was home and hard to be away from the kids when I was at the hospital. No matter where I was, sixty miles seemed too far away under such crisis.

I had toured three hospitals before choosing Western Rehab, which was close to our Sandy, UT home, but more importantly, they specialized in Traumatic Brain Injury (TBI). I was confident that Western Rehab was the best place for Mark. After I had made the decision, Mark got a terrible a liver infection, which almost took his life. The doctor couldn’t commit to a release date because it felt it was best for Mark to complete the powerful intravenous antibiotic for at least two weeks and make certain no other setbacks occurred. With each passing day that Mark improved, I became increasingly worried and anxious that Western Rehab would fill up all their beds and we’d lose or have to postpone the opportunity to move there. They only had two beds available when I checked them out.

When the doctor told me I could take Mark out of the hospital without his permission, I checked with Western Rehab to make sure they had room for him. Even though I believed this was the best place for Mark and I was anxious for the move, I also knew McKay-Dee Hospital had very competent and skill doctors and nurses. It was harder than I thought it would be to leave the hospital that literally saved Mark’s life at least twice. My appreciation for doctors and nurses along with the security of a hospital family that had seen me through some very worrisome times made it difficult to leave. However, having Mark so far away from home was even harder. I also had faith that a Rehab hospital which specialized in TBI would be a more positive atmosphere, which I believed would help him come out of his coma. These reasons outweighed my reasons to stay. It was difficult taking a new path because I didn’t know for sure where it would lead, but I also knew I couldn’t let the fear of the unknown stop me. I had to give up some good things in order to choose others that were better or best.

Three things to consider when choosing between good, better and best:

• Is it an emotional or logical choice? If it is both, it is best.
• What are the consequences? What could go wrong and how can you protect against it?
• Look at the big picture. Does it have long term benefits or just short term?

As Laura Nordfelt stated in her comment, “We can accomplish more than we realize when our loved ones need and depend on us. We can do things we never imagined.” I would add and make difficult choices.

What steps have you taken in deciding whether you have made a good, better or best choice? Have you ever had a choice and not realized it?

Related Article: Five Steps to Making Good Decisions

 

 

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?

Caregiving Reflections

Written by, Dianne Breitling

Mother’s Day has become a time of reflection for me as I remember the final years my mother and I spent together. The hours we shared as well as those spent doing things for her are precious to me now, filling my heart with gratitude for circumstances which allowed me this privilege.

My mother had spinal disc problems which resulted in several surgeries and constant pain. She also had to have both hips replaced. Because of her physical limitations, my father became her caregiver doing all of the cooking and housekeeping for about fifteen years. Late in life my mother developed severe arthritis, which greatly limited the use of her amazingly creative hands. Through it all, my mother could always be seen with the most wonderful smile on her face. She loved people more than anyone I have ever known. For the final eighteen months she was in her scooter most of the time because the pain had become more than she could bear when walking.

At age 85, my father had a minor car accident, making him feel unsafe on the road. His wise decision to stop driving was the start of my journey as a caregiver for both of them. Since I lived close by, I gladly took on the responsibility to drive them wherever they needed to go such as doctor and dentist appointments, getting haircuts, and shopping as well as picking up prescriptions or any other household or personal items they needed. This was a difficult transition for my father since he had been the caregiver for my mother for so many years.  He went from doing everything for the two of them to depending on others in a relatively short time and each loss was painful for me to watch.

Both of my parents became so comfortable with me doing things for them that even when my siblings offered to help by taking them to their doctor’s appointments, they wanted me to do it because I was familiar with their needs and knew the doctors they were seeing. They also preferred me to do the shopping over my siblings because I knew their likes and dislikes.

Dad became very ill and had an emergency colostomy, changing our world drastically. I spent countless hours with him in the hospital trying to get answers from the medical team and worrying that we might lose him, while still caring for my mother’s needs. When he returned home it became clear I could not carry on with everything I had been trying to manage while adding the new burden of changing his colostomy bag regularly. My brother would sometimes do this, but he had irregular work hours and lived further away so it was difficult for him to be there at the needed times. The responsibilities had fallen on me because of how close I lived to them and because I was the only child who did not have a full-time job.

After three years and growing needs, I requested each of my siblings to take one day to check on them. They were asked to make sure our parents had everything they needed and to help with dinner if necessary. When our father was in the rehab center, the scheduled person for the day was responsible to lay out breakfast, medications and check on mother by phone in the morning. This gave me two assigned days instead of the five to seven days I had been used to, but even that became difficult because if someone couldn’t meet their obligation my mother would call me and ask me to come over. Calls early in the morning or late at night were a regular occurrence. Often I would hear from my parents and my siblings that I was a life-saver or they wished I didn’t need to do so much, but after years of struggling with so many responsibilities, those words were not enough. I can see now it would have been so much better if I had been able to convince my parents to let me hire some outside help, but when I was in the middle of the experience, it was hard to know what to do. Looking back usually changes the perspective and solutions become clear.

In 2010 my father was hospitalized with a severe infection (MRSA) and while in rehab, he agreed to move into an assisted living center. My brother, sister and I made the arrangements, but at the last-minute he changed his mind. He didn’t want to give up the little bit of independence he still had, making those last days in his home emotionally difficult for both of us. I wanted to help make it possible for him to live at home, but told him when he could not prepare their meals that would no longer be possible. Both parents refused the idea of having Meals on Wheels delivered or having someone come in to cook and clean a few times a week. At this time the emotional strain was increasing because they knew I was making it possible for them to live in their home. This created feelings of gratitude, but also resentment towards me because I had too much say about what happened to them.

After a second bout with the MRSA infection, my father realized his strength wasn’t returning and once again asked me to make arrangements for them to move into an assisted living center. My father only lived there for five months before he passed away. My mother was lonely and continued to need attention after his passing. My siblings and I continued our daily schedule of checking in on her for the additional thirteen months of her life at the assisted living center.

Through all of the years of caregiving, my husband was always supportive. Not only did he spend time doing many things for them, he never complained when he came home to an empty house and no dinner or when our lives were put on hold while I met the needs of my parents.

As I reflect on the time spent caring for my aging parents, I realize the major challenge was recognizing the weight which came from the cumulative effect of the responsibilities taken on. The coordinating of two households with the added worry and care of their declining health was extremely difficult.

While I missed spending time with my children and grandchildren during this time, I am grateful I was given the strength to care for my parents during their final years. When I look back on this experience, it is clear that the blessings far outweigh the sacrifices. My feelings are joy and comfort because I have no regrets. I’m happy they are in a better place without health complications and pain; but      I love and miss them both.

Thank you Dianne for your caregiving example and for sharing your experience on Uniting Caregivers. What a wonderful daughter and big difference you made in their lives.