Our Happy Place

Hip QuoteTwo 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.

DadsRightHipDadsLeftHipThe 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 (2)

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?

The Wonders of Recovery

Mark’s left hip replacement went well last Tuesday, January 26th, despite the delay. It didn’t even get started until 5:30 PM due to difficulties with a prior surgery. Around 9:30 PM he was moved into a hospital room groggy, but awake. It made for a very long day and night. His appetite and strength have been very good. The main concern has been the dark, huge bruise from under his armpit to his waistline, not where we expected to see bruising after hip surgery, which makes me wonder what went on in that surgical room.

Wednesday, Mark had a radiation treatment to slow the bone growth in his hips, which is the cause of his joint problems. Thursday, he was released from the hospital to Rocky Mountain Care.

If you’ve experienced rehabilitation, you’re probably familiar with uncertainties like: How long will it take to recover? When will we realize the advantage of surgery? How much pain will have to be endured? These and possibly many more questions, along with the enormous desire to feel better right now are part of the recovering process.

Before Mark was discharged from the hospital with the right hip surgery last July, I visited six rehab centers in our area which were listed with the insurance company. I can’t imagine spending such an important and limited time in a facility without doing research first. With the doctors recommendation, we’d wanted Mark could go to HealthSouth for rehabilitation. They specialize in neurological problems and since Mark has a traumatic brain injury (TBI), I knew they had equipment which Mark would need for rehab. However, the insurance wouldn’t allow it because this rehab was based on a hip surgery and not TBI. Disappointed, yet determined to get Mark the best possible help with therapy, our second choice was Rocky Mountain Care. I was impressed with their homelike atmosphere, clean smell and they had more equipment than the other gyms I visited on the insurance approved list.

Mark’s TBI and physical limitations give him special needs. At home we have a standing frame and a roll-in shower along with a shower/commode chair which he uses daily. The rehab centers on our insurance list didn’t have either and since they’re important for his recovery, therapy plan and general health, I’m willing to bring them from home along with his custom walker. The challenge is finding a room which has space for it all, plus an extended bed for his height and a trapeze, which helps him change position while he’s in bed. Along with these essentials he needs the capability to maneuver his wheelchair in and out of the room. Wow, this list sounds pretty lengthy and must be why we don’t travel anymore.

Suite office & kitchen

Suite kitchen and my office area. Door in between goes to bedroom.

Suite living room

Suite living room

Fortunately, Rocky Mountain Care has a couple of rooms which can accommodate Mark’s needs and they’re willing to let us arrange the room to do so. In August and September of 2015, we were lucky enough to get a suite. It was beautifully furnished and definitely the nicest room in the building. The kitchen had a full-size fridge , small microwave and a solid wood dining table with six cushion chairs.

Suite living room (2)

Suite living room with therapy balloons and balls.

Suite bathroom

Suite bathroom

The living room was furnished with a couch, two comfortable stuffed chairs separated by a table and lamp and a television on top of a beautiful wood stand. A large wood desk was in the back of this room by a glass sliding door which led out to a small patio. The view of the mountains from the living room and patio was spectacular.

The separate bedroom had two twin sized beds, a large dresser, a chest of drawers and a roomy closet. The bathroom had ceramic tiles with a roll-in shower and was perfect for the shower/commode chair or wheelchair. This is unlike any other room Mark’s ever had in a rehab center. We felt spoiled and a little guilty for having it.

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Therapists, Brandi and Trish

The room was wonderful, but the biggest advantage to Rocky Mountain was the therapists. They were knowledgeable, caring and worked hard to improved Mark’s abilities. For this reason, they were our first choice this time around. It was nice to have the decision made before surgery and it actually decreased a day in the hospital because we made the arrangements beforehand.

Since Mark has a severe short-term memory problem, he is dependent on me to keep him oriented. Unfamiliar surroundings and routine make him feel unsettled and his memory is worse. He forgets what he’s supposed to be doing and where he is, which can make him agitated or anxious. Since I want him to get the full advantage and have the best experience with rehab, I prefer to stay with him. The suite made it easier, but because it’s a lot more costly than a regular room, we are not in the suite for this round of rehab. It’s been an adjustment and the difference is like being on a cruise verses camping complete with an air-mattress for me. It’s hard for me to go home because I worry he might have a seizure and the nursing or aide staff will not know. I wonder if he’ll be able to find or remember how to use the call button when he needs help and the waiting time for that help also concerns me.

Mark's bed on the west wall.

Mark’s bed on the west wall.

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Entrance to room

I like to be involved in Mark’s care—not to interfere, but rather assist while he is here. However, it’s awkward to step back since I’ve been taking care of him for so many years. I have to continually remind myself  that what seems so obvious or natural to me isn’t for the professional caregiver who has several patients at one time with all different levels of abilities. I’m realizing every rehab experience is different even with the same patient, therapists and caregiver staff.  But the goal is always the same—to get home stronger and better. We’re confident it will happen with the therapy and supported care we have here.

Mark's standing frame and my work station.

Mark’s standing frame and my work station. West and south wall.

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East wall with my air-mattress standing up, which I lay down for sleeping.

 

 

 

 

 

 

 

We are grateful for all the well wishes and prayers. We feel blessed and amazed at Mark’s ability to heal and adapt to foreign implant objects. This along with all the love and care of others is the most wonderful part of recovery.

I Need Thee Every Hour

Right hip replacement with extended rod for added stability.

New hip-front view

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

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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.”

True Grit“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.

All Is Well

Mark had a hip replacement surgery yesterday. This decision of whether to have the surgery or not has been weighing heavily on our minds since January. Over the past several months he has had many test to help us decide if he was a good candidate for the surgery. The surgeon was not sure and was worried that he might break a bone in the surgery due to his osteoporosis. After Mark’s bone scan he asked the doctor if he was “dense enough.” We had a good laugh at Mark’s humor and then he told us he was a high risk for a break. We decided to take the risk and it has felt like a huge elephant ride waiting for the surgery date. On day it’s on and the next day we’re swayed to the other side and maybe it’s off.  We were happy to finally slide down the elephants trunk and get off of that ride.

All went well and the surgeon is so pleased and is as relieved as we are. Now we face three days in the hospital and at least three weeks in rehab where the hard and painful work will begin. Unfortunately, Mark will have to do this again in October for the left hip to get full benefit. Mark jokes that he’s a basket case—because he has a basket full of complicated health issues. I love this man and his humor. He has the ability to make me laugh even, or most importantly, under stressful times. I feel so fortunate to have him in my life!

Just what I needed to remember today.
All is Well1

Current Situation

Giving Thanks Always

I’d be willing to bet every caregiver has had to make a difficult decision concerning their loved one’s health and it’s hard to give thanks for all of it. For the past several months we’ve been struggling with what to do about Mark’s hip pain and the lack of movement in them, which makes every transfer tough. Because he can’t bend his hips at 90 degrees, his sitting posture is poor, causing spine and neck issues. We finally concluded that the situation isn’t going to get better on its own and without a total hip replacement his general health will decline. With his osteoporosis bone loss he has a risk of a hip fracture, which is why this decision for a total hip replacement has been difficult. Also, his muscles need to be strong enough to hold the hip replacement in place, which is an additional risk. When we weighed the risks against the probability of decline in his movement if we don’t go forward with the surgery, the scale tipped slightly in favor. Therefore, next month Mark is scheduled to have his right hip replacement done and in October he will have the left hip done. He will have a three day hospital stay and three weeks in a rehab center. This year will have major medical expenses, but we can give thanks to a skilled orthopedic surgeon, nurses and therapist who we put our trust in for his care. I’m sure there will be more lessons to be learned from this journey. I hope we will be a quick study.