Two Hats of Many

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Wanda holding sister, Jerrie (1), Karen (2) on Mark’s 11th birthday

I’ll bet every woman feels she is wearing too many hats from time to time as she tries to fulfill the needs of family, friends, personal, professional, neighbors and colleagues. Today we celebrate mothers of the family and the influence women have in society. Next to my own mother who gave me the gift of life and continues to effect who I am today, stands my mother-in-law, Wanda. Her optimistic power in Mark’s life is a great blessing to me too.

Besides being a creative, fun, loving and caring mother, she made a career as an Occupational Therapist (OTR). Wanda was the first OTR I’d met and I assumed she helped people find a job. It didn’t take long for Mark to set me straight. She helped people with mental illness perform activities needed in daily life by using a crafts media.

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Mark and Wanda

Through the years after our accident, I quickly learned the importance of skilled OTs. The ability to brush his teeth, feed himself and get a shirt on became the tasks Mark had to relearn after his Traumatic Brain Injury (TBI).

Since 1991, I’ve met more OTs than I can count and I appreciate each one for their help with improving Mark’s quality of life.  Whenever meeting an OT for the first time, Mark proudly states, “My mother is an OT” He then shares some experiences he had as a child with her work.

I’ve written, “I was raised to be a caregiver.” My upbringing helped prepare me for this challenge. Likewise, I believe Mark’s childhood prepared him to be a survivor.

Two hats, Mother and Occupational Therapist, which have had the greatest impact in our lives.

I asked Wanda why she chose this career and she agreed to let me publish this interview.

The first thing that drew me to OT was a movie called Snake Pit. It was about a woman who was committed to an asylum and how she eventually recovered and was released. When I was picking a major in college and looking through college catalogues, OT caught my eye because it involved helping people and a lot of crafts. I learned that psychiatric hospitals had OTs and the deeper I looked into it the more interested I became. Psychiatry and the idea of helping someone improve their attention span, concentration, attention to detail, better living and socialization skills and generalization by using crafts media was what influenced me most.

How long and what kind of schooling did you need before you could practice OT?

I had four years in college with a major in OT and a nine month internship working with other OTs and passing the national exam, which qualified one to add the R after OT. The internships had to be in all these fields: pediatrics, general medicine, tuberculosis, orthopedics and psychiatry and you had to be over 21. I started college in 1948 and got my degree in 1952. By the time I finished internships I really liked both orthopedics and psychiatry and decided I would take either kind of job. Psychiatry was the first job that turned up so I started in 1953. At that time about the only hospitals that had psychiatric patients were institutions. Since then most hospitals of any size have a small unit for psychiatric patients.

How long did you work in this field?

If I remember correctly, I think I worked in psychiatric settings for 22 years: small private settings, large state and territorial settings and the last 16 years at a medical teaching university.

What made a good patient to work with and what made a good family member or caregiver?

All patients were good to work with. We seldom even met family members because until recently, families were ashamed or afraid of mentally ill family members and seldom even acknowledged them. The patients were committed to hospitals and lived there, seldom seeing or hearing from their families.

How did you feel about this separation from family?

I thought family abandonment was terrible, but that’s just how it was. Some of the staff were concerned about the patients, others not so much. In hospitals where patients stayed a long time (years), they formed friendships and the hospital was like a community.

Describe a typical day at work and some of the crafts you did with the patients.

At Oregon Health Sciences University, the day started with rounds, then OTs led an exercise group and a crafts group before charting and lunchtime. After lunch, we led a relaxation group, then an activities group where we worked on attention span, concentration, social skills, etc. This often involved playing games of all kinds, quizzes or planning for the lunch that the patients got together to cook for everyone on the unit once a week, then more charting. Yes, we used a full variety of knives and never had a problem with them in any of the groups. We did check tools and equipment after all groups. In other settings, OTs were responsible for arranging social events, mostly dances and church services. This included everything from getting the band or minister to setting up the room. Sometimes we took patients on outings such as bowling, walks, etc.

 Some of the major crafts we used were: leather work (hand tooled and carved purses, belts, etc.), weaving on pot holders frames to floor looms, ceramics (slab construction, pinch pots, molds), needlework (knitting, crochet, embroidery, sewing) and all minor crafts you can think of.

There was a job cut, so Wanda retired in 1998, seven years after Mark’s TBI. From my own experience with OTs I can imagine the constructive difference she made to hundreds of patients she helped, along with the students and colleagues she influenced. I witnessed some of this when Wanda visited Mark in the rehab center as she quickly became friends with Mark’s OT  The therapist was new to the field and appreciated Wanda’s experience and sought her advice at times. Since Wanda lived several hundred miles away, she mailed things for Mark to work on or sent articles with ideas to help him.

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Wanda & Mark 2016

There are all kinds of influential women in this world. If you’re lucky, you get one for a mother. Some people aren’t so blessed, but have other women in their life who nurture, teach and inspire them. Today we celebrate all women who make us feel like we’re easy to love and fun to be with. Who gives us freedom to grow and lets us know it is okay to make mistakes. I’m fortunate to have several such women in my life. The greatest of all are my own mother plus a mother-in-law or more appropriately thought of as a “bonus mom.” I think Mark is equally fortunate. He was raised by a wonderful woman and has the advantage of an ideal “bonus mom.”

MothersDayImages1To all the wonderful women in the world who benefit lives in a positive way!

Embracing Life Challenges

Therapy isn’t fun, but the progress and inspiration I get from other patients encourages me. Last week I met JR. He’s a recent amputee who is embracing his new life challenges. I told JR about Uniting Caregivers and asked him if he’d allow me to share his story. He graciously agreed to let me interview him.

I took a seat in the large, open sitting room just as you enter inside Rocky Mountain Care in Riverton, Utah. This area is a popular place for the in-patients to read, do crossword puzzles or chat with visitors, so we found a quiet corner by the grand piano looking towards a fireplace which wasn’t lit due to the unseasonably warm November day. The home-like atmosphere makes this place comfortable, but I have to admit, I’m glad to be here as an out-patient.

JR is sitting in a wheelchair wearing a white T-shirt with dark blue, bold letters which say, “I’m retired. Do it yourself!” I told him I look forward to wearing a T-shirt like that someday. He told me he bought it in California as a statement to his grown children. They brought their kids for him to watch every day after he retired from a newspaper printing company in 2011. “Don’t get me wrong, I love my grandchildren, but I had just retired and wanted time to do some things which I couldn’t do before retirement.”

I nodded and told him it made sense to me.

“You know you never retire from family. I wouldn’t want to,” he said as he shrugged his shoulders. “It’s just every day that made it too hard.”

I asked JR what diagnosis brought him here.

“Well, in 2001, I was diagnosed  with type 2 diabetes. It progressively got worse and by 2011, I couldn’t drive anymore because I didn’t have feeling in my feet. I couldn’t feel the gas or brake petal. I could step on a tack or staple and not feel a thing. I couldn’t feel items on the outside of my feet, but inside, my feet were very painful.”

“That sounds awful,” I said.

“Yes, and it partly led to my retirement, but the hardest part was I’ve always been an outdoor person. My feet problems made camping or driving ATV’s hard. I finally bought a Jazzie to save my feet and to use it to motorize when I’m outdoors. I also have a manual wheelchair for when I would go out to Village Inn or do other activities. I like to use that chair when I’m indoors.”

“Aren’t wheelchairs great,” I added. “My husband needs an outdoor and indoor wheelchair too.”

JR nodded in agreement.“They allow me some independence and I knew this was coming,” he said as he glanced down at his gray sock which covered his shortened leg. Later he told me the compression sock which covers the ace wrap around the newly cut leg is called a “shrinker.” It decreases swelling, which is critical for the proper fitting and use of an artificial leg.

“What happened,” I asked.

“I got an ulcer in my ankle. The open sore failed to heal even after weeks of being on a heavy duty antibiotic through an IV pic line. On week four of fighting the infection I had surgery to clean it out. Week eight they did an MRI which showed the infection had gone into the bone. On week nine my skin actually peeled when they unwrapped my leg. My toe was black. The infection had moved down into my foot and toes. That’s when the decision was made to do an amputation,” he said in a matter-of-fact way.

“I’m sorry,” I said. “I’ve heard it’s harder to heal when you have diabetes.”

“Yes it is. I fought the infection for about three months. The doctor called it gangrene and recommended amputation.”

September 1st they did the first cut on his right leg and he was scheduled for a second surgery six days later. On that sixth day he was feeling pretty good and thought he could get to the bathroom on his own. Unfortunately, he fell and broke his left hip. Instead of surgery on the amputated leg that day he had a titanium rod placed in the left femur, which was secured with two screws into the broken hip. The following day he had his second surgery on the right leg. In an eight day period of time he had three surgeries. After twenty-one days of hospitalization he was taken to the care center on a stretcher for rehab.

“The first week was torture. Not because of the amputation, but because of the broken hip. I worked hard and have done more than they’ve asked me to do. The hip has been the most painful.”

jrI first met JR on Halloween. My therapist said, “You have to meet JR, he’s a great example of embracing life challenges.” She wheeled JR into the room. I had to smile as she introduced us; he was dressed like a pirate, complete with a wooden branch for a peg leg.

I told him he looked great and we both laughed. I thought his jolly disposition along with his long white beard and hair made him also a good candidate for Santa Claus. He later told me about the trick-or-treaters who came that evening. One boy asked him what happened to his leg. His father seemed embarrassed and hurried him on to the next bag of treats. Another boy also asked what happened, but this time JR was given the time to respond.

“I was in a sword fight and lost my leg. Boy—did that boy’s eyes get wide,” JR said with a mischievous smile. “I imagine his dad had some explaining to do later,” he chuckled.

JR and I discussed how this incident reminded me of many conversations we’ve had through the years where children ask questions about Mark being in a wheelchair or why he talks the way he does. Some just bluntly ask, “What happened to you?” Or simply state, “You talk funny.”

“Some parents are so mortified they turn away and rush their child away from us. This actually makes us feel more awkward. Parents don’t need to be embarrassed. We understand Mark looks and sounds different than most,” I said.

JR agreed and added, “I’m not ashamed of my missing leg. I didn’t do anything wrong. It is what it is.”

JR shared his goals and timeline with me and said he should have his artificial leg on November 28th. He also has some work to do at home, especially modifying the shower because he won’t be able to stand to shower. He’s working on those arrangements as well as his rehabilitation.

“I want to be independent and I can be with modifications. I know there will be some limitations, but I can work around those. I came in on a stretcher, but I’ll walk out of here.” Then he added, “Hopefully before Christmas.”

Thank you, JR, for sharing your story. I really appreciate your example of embracing life challenges. Best wishes to you and your family as you make the transition home. It’s been my pleasure getting to know you and I won’t forget your example along with others at Rocky Mountain Care who have made my shoulder rehabilitation more pleasant.

Looking for Inspiration

Mark’s pneumonia seemed to be improving, but the fever persisted and the white cell count was too high. Dr. Wright felt changing his feeding tube would improve his condition.

“The nasogastric (NG) tube is not meant for long term and can be a source of infection. Since we don’t know how long it will take for Mark to be capable of chewing and swallowing, I recommend it be replaced with a gastrostomy tube which allows feeding directly into the stomach,” Dr. Wright said.

“It would be his third surgery in nearly three months. I would hate for him to go through it, especially when he’s showing signs of improvement.”

“The percutaneous endoscopic gastrostomy (PEG) procedure is relatively common under these circumstances. It’s a simple surgery, which only takes 30-45 minutes,” the doctor said.

I despised making decisions for Mark. The responsibility was a heavy load that I was unprepared to carry. What would he want? I tried to connect with his spirit. Tell me Mark, what do you want me to say? Do you need the feeding tube? Should I agree to it? I knew I had to be his voice, but I wanted him to give me the answers. I felt and heard nothing.

“I believe the PEG will improve Mark’s condition and lower the frequency of aspiration. He’ll tolerate it better,” the doctor encouraged.

“Okay,” I agreed reluctantly.

Within a few days, Dr. Wright arranged for the surgery at a nearby hospital and ordered a specialized van which could transport Mark in a reclined wheelchair. I rode in the van with Mark. He was unconscious and seemingly unaware of the drive on this beautiful, hot summer day in July. When we arrived at Cottonwood Hospital, two male aides lifted Mark’s stiff body onto a stretcher and wheeled him into an operating waiting room. I meet the surgeon for the first time just minutes before the surgery was scheduled. With a nurse at his side, the doctor explained to me the procedure details. The nurse handed me a thin, wooden clipboard with forms for me to sign, not only giving approval for the surgery, but declaring my understanding of the risks involved. The complications listed included: aspiration, oversedation, wound infection and/or bleeding. These complications I could comprehend, but an injury to the liver, bowel or spleen took me by surprise. When I read hemorrhaging and perforation, or unwanted hole in the bowel wall, which could be fatal, a big red flag shot up in my mind.

Risks—wait a minute. I was only told about how common and simple this procedure was. Now I’m reading about all the unfortunate possibilities and just minutes before the surgery was scheduled. I felt trapped and wasn’t convinced Mark needed the PEG in the first place. I believed with every fiber of my being that life would get back on the normal track—the one we were familiar with.  I couldn’t imagine any other way of life, but these foreign road blocks kept getting in our way.

I looked at Mark, who was unaware of my turmoil. I resented being in this position. I was hoping and praying for inspiration to know what his desires were, but I felt nothing.

“I can’t sign these forms,” I said to the surgeon, handing back the clipboard and forms to the nurse. “I wasn’t made aware of these complications.”

“Oh, the chances of any of them happening are one in a thousand,” he said in a reassuring voice.

“Before our car accident, I could think Mark would never be that ‘one in a thousand’. The statistics mean nothing to me now. How many car accidents happen and result in a traumatic brain injury, causing a coma for three months? If you happen to be that ‘one in a thousand’, that’s all that counts.”

“He’s had the NG tube twice as long as recommended. They are not meant to be used more than six weeks. Dr. Wright has recommended this procedure in order to maintain adequate nutrition for Mark.”

“I understand, but I just don’t know how much longer he will need any feeding tube and I wasn’t told about the risks until now. I need a few minutes to process this information. I don’t want to sign the consent forms under pressure. I need to think about it, I’ll be back soon,” I said as I walked out of the room, leaving the nurse and surgeon with Mark.

I hurried down the hall wanting to vanish from this situation, but not knowing where to go. I can’t believe I just walked out. I don’t want to make one more decision about Mark’s healthcare, but I’m expected to. I wasn’t getting an answer from Mark on what I should do, so I knew my best option was to find a secluded place to pray. I spotted a women’s bathroom, went inside and locked the stall door. Lord, I’m under pressure to sign for this procedure. I believe you know all from the beginning to the end. Please tell me—should I sign for Mark to have the surgery? Does he really need it?

Feeling awkward and anxious about this strange place for such an important prayer and my desperate need for inspiration, I was quickly overcome with a calming sensation. Yes, he needs the surgery. Fear not, everything will be alright., I am with thee.

Thank you for your insight and reassurance.

I walked back to the room with confidence in my decision and the surgeon and nurse were relieved when I told them I was ready to sign the forms. The nurse handed me the clipboard and after my signatures, they rushed off to the operating room.

Ninety minutes later the surgeon finally came to the waiting room where I was told to wait. “The surgery was a success. The reason it took longer than usual was because of Mark’s strong stomach muscles.”

“He’ll be proud to hear that,” I said with a smile. “Mark did a hundred sit-ups nightly to stay fit and trim. He never wanted a pot belly.”

“Well, he definitely doesn’t have one. It’s more like abs of steel,” the doctor said as he shook my hand good-bye.

Mark and I spent a few more hours at Cottonwood Hospital in a recovery room and by early evening the van came and drove us back to Western Rehab. The dreaded G-tube was in place and all went well. Mark survived his third operation and I looked forward to telling him that the surgeon confirmed his abs were made of steel.

 

Time Is Your Friend

Recently, Mark stated, “Time is your friend, not your enemy.”

If it’s my friend, then why do I  feel like I’m always in a battle with it? I just don’t have enough of it to do all I’d like to do. You may be thinking, well, we all have the same amount of time! This is partially true. There is sixty seconds to every minute, sixty minutes to every hour, and twenty-four hours to every day. However, none of us knows how many years, days or hours we have in a life-time, which makes it different for each one of us.

In my youth I never thought about it . . . I was invincible and too busy planning all the things I’d achieve in a lifetime, like how many children and grandchildren I’d have, all the wonderful vacation spots I’d see, and all that I’d accomplish in my career.

At age thirty-two I was in a car accident that postpone my plans. The desire to obtain has not changed, but in a single second my direction in life took a dramatic turn. I guess I haven’t fully made peace with the change because the older I get the louder I hear the click of the clock, and see that time is rapidly passing. It seems with age, the disappointment of unfulfilled expectation grows, along with the realization that some things may not be accomplished in this life.

Since the car accident, often, when Mark is asked how things are going, he’ll say, “slow, but sure . . . but, sure slow.” This statement is right on. Every ability Mark has comes slowly, much too slowly for me and for him. However, he steadily works every day for improvement and has done so for the past twenty-two years.

He struggles to do things the rest of us do without thought or effort  like eating, drinking; brushing his teeth, combing his hair; typing or writing; propelling a wheelchair; balancing on the edge of the bed, or rolling over in bed. He has to concentrate and work hard at moving his arms, legs and feet. In other words, what most of us do without thought or effort, Mark works at and it becomes meaningful. Speaking also takes a lot of effort for Mark. Consequently, he chooses his words carefully and says a lot with just a few words.  He thinks before he speaks. A trait I’m trying to cultivate.

Because Mark’s progression is slow, his destination is sure. He knows exactly what he’s working towards and he has a plan how to get there. He feels enormous amounts of joy and fulfillment when he reaches his goals. The time and effort it takes makes his abilities so impressive. Mark is teaching me that when things come slowly they mean more.

Mark has also said, “Time is not an obstacle. When you make peace with time you can think positively about the future.”

I’ve been pondering this statement and have come to the conclusion that this is one reason why Mark is at peace with himself. He understands that time is on his side; he’s not in a race against anyone else. Therefore, he is the most positive person I know.

Faith in timing

One day I asked Mark if he had an age goal he hoped to reach. He answered, “just as long as it takes,” another profound statement.

Mark inspires me and I know he is right. The amount of time we have isn’t what matters. It’s the striving to accomplish, grow, and improve that counts. Mark’s patience teaches me that it doesn’t matter if it comes slow, as long as it’s sure . . . and some times, it sure seems slow!

 I love being married to such a wise man.