The Wonders of Recovery

Mark’s left hip replacement went well last Tuesday, January 26^th, 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 kitchen and my office area. Door in between goes to bedroom.

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 with therapy balloons and balls.

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.

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.

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. West and south wall.

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.

It’s A Wonderful Life

While we busy ourselves with decorating our homes, attend delightful Christmas programs and parties, shop for the perfect gift for our loved ones, send cards or newsletters, hopefully we don’t lose the joy of  the season. Some days our life is filled with wonder as to where to start with all there is to do. It can become overwhelming and discouraging. For other people it’s a very lonely time.

This month also means the year is coming to an end. My work load increases with year-end reports and preparations for the New Year. I’m constantly reflecting on the past eleven months and speculating how to improve circumstances and our situation for 2016. This year has definitely been one for the books in all aspects of my life, both personal and business.

As I reflect on this year which started out anticipating improved health for both Mark and I. My hernia was getting harder to ignore and since I’d had it for several years the doctor told me I was at risk of it strangulating, which would cut off the blood supply to my intestine and could be life-threatening. In May it was successfully repaired without complications. The best part of my recovery was our daughter, Katie, and her husband, Eldin, stayed with us for five weeks since I wasn’t allowed to lift Mark in and out of his wheelchair. Katie became our main caregiver and she did a marvelous job. We enjoyed having them here.

Mark’s painful hips could no longer bend at ninety degrees, causing him to sit in his wheelchair incorrectly, which caused back and neck problems. Twenty-two years ago he had both hip joints scraped clean and we thought it was time to get that done again. After an x-ray, the doctor informed us he wouldn’t be able to do that type of surgery again and instead the hips would need to be replaced. We got a second opinion and were told the same thing. More testing was done because Mark isn’t a good candidate for a total hip replacement. He has the early stages of osteoporosis and there was a worry of a break or easy dislocation. We were told his limited mobility would make it hard to heal. We debated back and forth whether he should have the surgery or not. Transferring Mark in and out of the wheelchair was getting harder due to his inability to bend forward at the hip.

It’s hard for us to comprehend that there may come a day when I’m not physically capable of taking care of Mark at home without lifts and other equipment to fill our house, but that reality was now staring at us. We were warned and understood the surgery and recovery would be hard, but we’ve done “difficult” many times so we were confident we could handle it. Mark had his left hip replaced in July. We lived in a rehab care facility through September. Since we’ve been home I’ve taken Mark nearly every day to outpatient therapy.

The surgery went well, but the recovery has been beyond what we could imagine. Mark has endured more discomfort and pain from therapy than I thought possible. He’s a man with true grit and has overcome a more advanced level of difficulty.

Despite the anxiety of surgeries this year, we have received many blessings. We were able to stay in a nice suite at the care center, which included a bedroom and bath with a roll in shower for Mark separate from a full kitchen and living room. I was able to take my computer there and continue to work from our temporary home. The furnished suite even had a beautiful view of our familiar mountains, which always brought me comfort during our new circumstances.

Mark has had excellent therapists who have become dear friends over the past several months. We are establishing a larger support group to help Mark continue the needed daily exercises even when the “official” therapy ends. These assistants are being trained by a certified therapist. I am so grateful for each person who is on Mark’s team. I appreciate the increased love and care we feel as we have built many new relationships this year through therapy and patients.

I’m so fortunate to have a flexible job, which allows me to work from home at all hours giving me the time I need to take Mark to needed doctor appointments, tests and therapy. I have two compassionate and understanding employers whom I love and appreciate.

It is truly a wonderful life. Not the one I’d envisioned, but I’m grateful for all the good that has come with it. As we celebrate Christmas and hopefully feel the love this season brings, may you take time to see the good you’ve brought into the lives you’ve touched. It’s not an easy thing to do and for George Bailey it took an angel to help him realize the impact his life had on others. My holiday wish is that you too can see the good in your wonder-filled life and realize just how wonderful it is. If it’s too hard to do, call on an angel to help. I’ve heard some are eager to earn their wings.

 

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.

Abs of Mesh

Image credit: healthcare.utah.edu

My successful hernia surgery was performed Tuesday, May 5, 2015. My sister-in-law, Dianne, took me to the new and beautiful U of U hospital located in Daybreak. After checking in and the dreaded weight scale, they directed me to a nice room. Unlike the older hospitals I’ve been in where the surgery waiting area is one large room with several beds in it with each bed sectioned off by curtains, I was directed to a small private room with a sliding glass door which was covered by a pulled curtain. I was handed a bag, asked to remove all my clothing and to put on this new wardrobe. I opened the bag and found a cap for my hair, some footsies and the traditional gown with only one snap for the entire open back. I thought about refusing because the gown was not only ugly, but disgustingly immodest. I’ve seen patients walking down the hallway in those silly outfits holding the back parts of the gown together with all the strength their weakened and awkward arms had while trying to manage an attached I.V. All I could think about was how ridiculous those gowns look. I’m normally not a vogue kind of gal, but these gowns are beneath even me. Finally, I came to my senses and remembered I was there for surgery, not a fashion show and changed into their requested attire. To compensate for the lack of apparel, the nurse offered the beloved warm blanket, which is the most comfortable part of any hospital stay.

Dianne and I only had time for a short visit before the nurse came in and started my I.V.  I met the anesthesiologist for the first time.

“Have you had surgery before?”

“Yes, thirty-one years ago,” I said.

“How did it go? Did you have any complications?”

“I got nauseated,” I explained.

“Well, the medication we use now is much different than those used thirty-one years ago,” he reassured me, “but we’ll give you some medicine to help with the nausea just in case.”

“Thanks,” I said, relieved there was something to offset those horrible symptoms.

He’d only been gone a few minutes before the general surgeon pushed the sliding door open and walked into the small room. She’s a pretty doctor with long, dark hair and I suppose a few years younger. She explained,“This surgery will treat your hernia by repairing the tear in the abdominal wall. An incision will be made so I have a direct view of the hernia and the repair will be done through this incision. To repair the defect, a special mesh material made of strong, flexible plastic which stays in the body will be used to patch the torn area. The mesh will be placed behind and in front of the tear. Over time, nearby tissues grow into the mesh to strengthen the repair.”

“So I guess this means I’ll have abs of mesh,” I asked with a chuckle.

She smiled, took her marker and drew on the lower part of my abdomen where the incision would be. I started feeling drowsy, but had one last request: “Please take out all the extra fatty tissue.” I remember her stating that was a common request as they pushed my bed towards the operating room, which I have no recollection of ever entering.

The next thing I knew I was asked to take a deep breath. My throat and the muscles in neck were sore. I was prepared to have a sore belly, but the throat and neck pain was a surprise. I was aware of the ice bag on my stomach, so I assumed the surgery was completed. “The surgery went well,” the nurse said. “Here are some crackers and ice water. Do you want a drink?”

She put a straw to my lips and I took a drink and started feeling nauseated. She shot something into my I.V. and said it would help, but it didn’t.

The nurse kept talking to me and I took that to mean my nap had been long enough. I supposed they wanted me to wake up and go home, so I tried to cooperate.

The more awake I became, the more nauseated I felt. Anxious to get the ride home over with, I asked Dianne to help me get dressed. What seemed to be thirty minutes was in reality six hours, which isn’t long when you consider the prep, surgery and recovery time. The nurse pushed me in a wheelchair to the front door with pain and nausea prescriptions in hand. Dianne pulled her car up to the front door and they both helped me get seated and belted in for the short drive home.

Before I knew it I was in the comfort of my own home, greeted by Mark and our daughter, Katie, who proved to be the best nurse I’d had all day.  She waited on my every need and quickly cleaned and replaced my barf bowls. It was the worst part of the surgery. I do not hold my anesthesia well and it was two days before I felt like I could hold down any food. I didn’t dare take my pain medication for fear it would only make me feel worse and the nausea medication given did nothing for me as far as I could tell.

My recovery after those two days has been comparably easy. The pain hasn’t been bad as long as I refrain from sneezing, coughing or laughing, which isn’t easy when you live with Mark, Katie, Eldin and their dog, Lizzy.  I’m hoping when my swelling goes down I’ll see that the doctor did as I asked in removing all unwanted fatty tissue. When my six week healing period is up I’ll be anxious to turn my abs of mesh into abs of steel.

Caregiver’s Syndrome Update

Hernia surgery should not be a big deal. I’ve put it off for over a year, not because I’m afraid of the surgery, but rather the recovery time. No lifting, pulling or pushing more than five pounds for three weeks and twenty-five pounds for an additional three weeks. That rules out taking care of Mark for six weeks. I’d still be procrastinating having the surgery had I not been sure two months ago Mark was going to need hip surgery. He was having pain, so I took him to the primary care physician and he ordered an x-ray. Since I have to transfer Mark onto the table, I’m given the opportunity to stand behind the glass wall with the technician and see the x-rays on the screen as they are taken. I’ve been behind the glass wall for every x-ray Mark has had in the past twenty-four years and I recognized the calcium build-up in his hips from a similar looking x-ray twenty-one years ago. I wasn’t surprised when the doctor recommended Mark visit an orthopedic surgeon after reading the radiologist’s report.

It made perfect sense to me for Mark to see the same surgeon who successfully performed the hip surgery years ago. Unfortunately, there was a six week wait to get an appointment. Meanwhile, I’m thinking the perfect time for me to have my hernia surgery, would be right after Mark’s hip surgery. He would need rehab and would qualify for care for in a rehab center—this would allow me some recovering time from my surgery.

I had my CT scan done and made the appointment with the general surgeon, who wanted to schedule the surgery right away. I told her it wasn’t possible until after Mark’s surgery.

Finally, when the six week waiting time ended, the orthopedic surgeon didn’t feel another surgery on Mark’s hips was possible, so all my planning went down the drain. Now that everyone knew I needed surgery for a hernia, there was no backing out. The past two weeks have been crazy interviewing and trying out aides who could care for this precious man of mine who is 6’2”, weighs 180 lbs. and is stiff and rigid, which makes him difficult to move. It’s been a challenge to find someone qualified to help him with showering and other personal care. Our daughter, Katie, offered to come and stay in our home to get her Dad in and out of bed and fix the meals. We are so fortunate to have her and since our son, Christopher, now lives in Washington, she carries the load with the support of her husband, Eldin.

Tomorrow is the big day for my surgery. I’m not at all concerned about it. I’m just wondering if, when and how I’ll get over my caregiver’s syndrome. I wrote about this October 16, 2013 and I still haven’t found a cure for it. Below is my account of the doctor’s appointment where I was diagnosed with it.

I have caregiver’s syndrome: I can make appointments and take Mark to the doctor more easily than I can do it for myself. My excuses are: I spend too many hours in the doctor’s office as it is; my issues are not serious; I’ll go later when things settle down. The truth is “trigger” thumb is not as serious as blood clots. However, it’s uncomfortable as well as somewhat debilitating. After trying creams and a thumb-support brace prescribed by my primary care physician seven months ago, I was convinced that only surgery would fix my problem.

I put off the appointment with an orthopedic doctor for months. How could I have surgery anyway? I need my hands not only for my care, but for Mark’s as well. Who would shower, dress, and transfer him? I didn’t want to ask family or friends.

Since September, when Mark returned home from the care center, we have the benefit of home health care. I really appreciate the extra support this gives me. I wish the insurance would see it as a continual necessity. But since they don’t, if I have to have surgery, now is the time, while Mark has this benefit.

I made my appointment.

After a three-week wait to get in to the doctor, I was told a cortisone shot would most likely take care of the problem. I had it and it did. Why did I wait so long? It was almost instant relief. The thumb is still a little stiff and I can’t completely bend it yet, but it’s only been one week.  The pain is gone.

I also made an appointment for my annual checkup that was four years past due.

“Have you had your colonoscopy yet?” the doctor asked.

“No,” I said, bracing for her reprimand.

“You’re almost 5 years late. You better get that scheduled. It’s not that bad.”

“I have helped my husband through the preparation twice. It was horrible!”

She imagines about how hard that would be for a wheelchair dependent person and the hundreds of rushed transfers to the commode, and then she agreed with me.

“The preparation is the worst part, then you get to nap,” she said, and suggested that next time I get Mark admitted in the hospital for the preparation.

“We can do that?” I asked.

She thought in his case we could.

After reviewing the questionnaire I had filled out just before the appointment, she looks at me and asks, “Why are you taking Flomax?”

“For my allergies,” I replied.

“Flomax is not for allergies it’s for the prostate.”

Turning red in the face I said, “Oh yeah, that’s my husband’s prescription. Mine is a nasal spray called, Flo something.”

She chuckled, “You mean Flonase.”

“Oh, yeah, that’s it.”

“You definitely have caregiver’s syndrome,” she said.

I’ll gladly take that reason over being absent-minded and resolve to pay more attention to my own health. I only have two prescriptions and I can’t remember the names of them. Mark, on-the-other-hand has several prescriptions, and those I know.

Mark’s well-being is dependent on me, therefore as a caregiver I should pay more attention to my own health so I can be well and strong.

It’s easy to say, hard to do. But I’m going to work at it.”

I’m afraid I’ve failed at taking better care of my own health. I still haven’t had my colonoscopy, but I took Mark in for his in October 2014. I’ve put off the hernia surgery for nineteen months. This tells me I’m still suffering from this syndrome. If any of you caregivers know how to deal with it, I’d appreciate some advice.

I’ll be in dreamland for the next week or so. I’ve been in the planning stages for this simple surgery way too long, but I’ll let you know how it all turns out when I’m feeling up to it. In the meantime, I hope all is well with you.