The Value of Occupational Therapy

Wanda OT1

Wanda in OT uniform in the middle of the back row

On Mother’s Day, I posted an article about Mark’s Mother’s career as an Occupational Therapist (OTR). I enjoyed interviewing her and thought it was interesting how treatments changed through the years and varied from those with physical, mental or cognitive disorders.

I’d never heard of an OT before I met Wanda. The word occupational lead me to believe they helped people find a job which was most fitting for each individual based on their knowledge and interests. When Mark realized my confusion, he explained she helped people with mental illness perform activities of daily living, which included crafts. Wanda clarified the craft media were used to improve attention span, attention to detail, concentration, planning, generalization, adaptability and socialization skills.

After our accident, I met another OT while Mark was in his coma. She did passive range of motion type exercises with the arms and shoulders. She ordered splints for his hands and wrists so they wouldn’t curl. I learned a Traumatic Brain Injury (TBI) can cause unwanted, excessive muscle tone, pulling hands and feet in positions which would keep him from using his hands properly in the future. Months later, after Mark came out of his coma and in a rehab center, I met another OT. She oversaw a series of full arm castings, which were needed to stretch out his muscles because the intensity of his flexor tone drew his right arm up to his chest and it was impossible, even manually, to stretch it down to his side. After several casts, he graduated into a brace, which he wore for nearly a year.

My experiences with OTs through the years have taught me there is a large range of treatments an OT does depending on the type of rehab needed. I recognize the needs of a TBI patient and one with mental illness are very different, but I wondered if through the years the profession and approach has changed. I decided to ask Wanda, who’s the best resource I know.

How did the field change from when you started to retirement?

“In the late 60s, there was a push to move patients out of institutions into halfway houses and to close the institutions. This was handled very poorly and resulted in a lot of misery for the patients. At this time family involvement became more common.

 When I first started working, there were no tranquilizers or really any other kinds of medications for the mentally ill. Electric shock, insulin shock and “the tubs” were the main types of treatment. A tub treatment consisted of the patient being submerged in a tub of cold water which had a canvas cover with a hole for the patient’s head to stick out and staying there for quite some time as body heat warmed the water. This kind of treatment was given by a Physical Therapist and OTs did not participate in any of these kinds of treatments.

How did you feel about this treatment and did it seem to work?

“Electric shock therapy did work for many patients. It’s changed a lot since the 50s and is still used for patients who are depressed or suicidal. It works quickly and if I needed it, I’d prefer it to the medications.

Insulin shock therapy was used for patients with other problems, but I don’t remember what the differences were. I haven’t heard of it being used since the 50s.

The tubs worked for some patients, but since I’m always cold, it seemed cruel to me.

These treatments were not used together and OTs did not participate. Treatment was determined by the diagnosis.”

What types of experiences can you share?

“Patients tended to self- isolate when first admitted. Some patients were good to others and some weren’t. They hallucinated freely and were sometimes hostile and aggressive. Sometimes patients had to be isolated until they were in better control of themselves. I can truthfully say I never had a problem with a psychiatric patient, as opposed to a patient with tuberculosis (TB) who was going to bash my head into the wall until other patients jumped out of bed and restrained him.”

Yikes! What caused that?

“During my TB internship, patients were confined to bed and the medications for it were limited. They could have crafts to work on in bed for a certain time limit, fifteen minutes per day for example. I refused to give the patient materials for more time and he got VERY angry. I took refuge behind my supply cart and other patients jumped out of bed and restrained him. These were all ex-servicemen in a VA Hospital.”

Sounds like the military taught them well!

Where did you work?

Wanda OT

Wanda on the far right

“Territorial Hospital on Oahu, HI, Northern State Hospital near Mt Vernon, WA, Firlawns Sanitarium in Kenmore, WA, Woodside Hospital in Vancouver, WA and Oregon Health Sciences University (OHSU). Firlawns and Woodside were small, privately owned Hospitals. The others were very large. All patients were legally committed.”

Mark talks about going to work with you at Firlawns as a child and still remembers some of the patients there. He smiles as he recalls one patient who sang Home on the Range. She changed the words to, “where seldom is heard, an encouraging word…”

We have Wanda to thank for our understanding of the benefits of therapy. Many therapists tell me they enjoy working with Mark because he’s willing to try whatever they ask of him. He works hard to recover or maintain the activities of daily living, which he did so easily before the accident. I believe his mother’s influence and her chosen profession kept him from giving up. With just eighteen years of living under the same roof and only twenty-one years in the same state, her inspiration continues to stretch across the miles between them.  It’s a testament to me to the importance of motherhood and the relationship formed in those early years.OT quote

I’m forever grateful for the Occupational Therapists who have worked with Mark. Their skills have made a difference in the quality of our lives.

 

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Laura’s Story, Part 9

Written by Christine Scott

ChristineIt’s with mixed emotions I sit down to write this last segment of Laura’s Story. As I search for the appropriate words to explain the concluding years of Laura’s life, I pray for courage to confront the painful memories surrounding her death.

Life changed as my family grew. In the early years of my marriage and family life, I included my mom and Laura. It was easy. My family was small and young. We made time for them. We fit our lives into theirs. As the years progressed my kids became involved in various activities. Soon sporting events, dance recitals and school activities crowded our schedule. It was never easy for my mom to bring Laura to these types of activities. We drifted apart, but sometimes we’d go out to eat and we always spent the holidays together.

Laura's Family, Silver Lake

Nate, Christine, LeRoyne, Laura, Eric, and Mom at Silver Lake

Weeks went by where I didn’t talk to my mom. I stopped inviting her to my kid’s activities because she always had a reason not to attend. I think she felt relieved when I stopped asking, but my heart ached for her to be a part of my kid’s lives.

While Mom worked, Laura attended a sheltered workshop where she assembled kits. Laura’s behavior at home was still pretty bad. She often spent all day refusing to get dressed and making it so my mom missed work and important events like my kid’s baby blessings and baptisms. She never hit or pulled my mom’s hair, but she would get in her face and yell. Eventually the doctors listened to my mom and prescribed medication for Laura’s behaviors. They improved a little, but medicine rarely fixes years of ingrained behaviors.

Laura’s health began to decline in her late thirties. She battled pneumonia once or twice a year, requiring hospitalization. Eventually she needed to be on oxygen at night. Many times when she was hospitalized we wondered if this would be the time she didn’t recover. I remember thinking maybe Mom could be a part of our lives after Laura passed away, when the demands to take care of Laura weren’t her main focus—and then I felt guilty for thinking such a thing.

Mom, Laura, Eric and baby Dallin

Mom, Laura, Eric holding baby Dallin

When Laura was hospitalized for the second round of pneumonia in less than six months, my brother, Eric, confided in me that he thought she wouldn’t be going home this time. She recovered enough to be placed in a long-term care facility. During this time Mom retired from her job.

After a few weeks at the care facility, Laura contracted HA-MRSA (Healthcare Associated Methicillin-Resistant Staphylococcus Aureus). The MRSA went into her lungs and the doctors said it had torn them up. They had her in ICU on a BiPAP machine.

A few days passed while the reality of Laura’s death loomed over our heads. I spent hours at the hospital with Mom. There was a time when Laura seemed to be getting better, but the doctors talked about putting in a feeding tube, saying she’d never be able to eat again. The best case scenario for Laura was being released to a long-term acute care facility where she’d always be on a BiPAP machine (which was considered life support because she couldn’t breathe on her own).

After considering the counsel from various doctors, including Laura’s primary care physician, Mom made the very difficult decision to take Laura off life support.

The next evening, we all gathered in Laura’s hospital room. The chaplain met with us first. I don’t remember what she said, but remember her warmth and support. After she left, a nurse came in and administered heavy doses of pain medication so Laura wouldn’t feel anything. After the medication had enough time to take effect, they removed the BiPAP machine.

Laura was the most alert she’d been in weeks. It was probably a relief not to have that machine over her face. And that’s when the doubts started flooding through me. Had we made a mistake? Maybe the doctors were wrong. Maybe she could recover. I’m pretty sure the same doubts were racing through Mom’s thoughts a hundred fold.

I don’t think we ever said goodbye and I don’t know if she would have understood if we did.

As Laura became depleted of oxygen, she was less coherent until unconsciousness overtook her. We watched and waited as her heart continued to strongly beat. The nurse told us the heart would often beat long after the patient stopped breathing.

This made me wonder, if Laura had been normal, would we have run together.  She obviously had the heart of a marathon runner. I felt cheated of having those kinds of memories with my sister. I missed her being whole and beautiful.

Slowly her heart stopped beating and she quietly passed away. One minute she was in the room with us and the next, she was gone. As I look back, the experience didn’t seem real to me. It was like watching someone else go through the steps of losing a sibling.

My grieving process was different after losing a mentally disabled sister.  First there was some guilt because I really didn’t miss her in the sense you miss someone who was close to you. Because of her disability, we never were close and my love for her was different. She was my sister and I was supposed to love her, but there were times, if I’m completely honest with myself, that I hated her. So after she died, I felt guilty for those emotions. Also, there was a little bit of relief—that maybe our family could finally be normal and feel peace. And I felt guilty about that too.

Breathtakingly PerfectI came across this quote by Elder Jeffrey R. Holland a few years after Laura had died when I was asked to give a talk in church on the resurrection of our Savior. Writing and giving that talk helped me through my grieving process. The knowledge that someday Laura will stand before me in her perfect form and we will be able to build that sister relationship we were denied in this life because of her disability brings me great comfort.

 

In February, Christine Scott started sharing childhood segments of her life with her mentally disabled sister, Laura. It’s been inspiring to get a child’s perspective on her family’s caregiving journey and the trials they had to withstand. The first segment of Laura’s Story, recounts her birth and slow development. In Part 2, Christine recalls the impact of Laura’s seizures and in Part 3, details of Laura’s fight with cancer. Part 4, reveals how Christine, at age ten, learned about the accident which lead to her father’s death and Part 5, recognizes the community of angels who helped her family get through their darkest days. Part 6, illustrates the importance of building fun memories with our loved ones, which can ease the grief of losing them. Part 7, Christine remembers her mother’s extreme demands as a young widow caring for three children on her own with the oldest having mental and physical disabilities and the youngest an infant. Unfortunately, Christine, the middle child who didn’t require attention was sorely neglected and often responsible for taking care of her baby brother. Part 8, reminds us of the importance of advocacy and the difference it can make in our lives.

Thanks, Christine, for being a guest author and sharing your life story of living with Laura. You have shown us that growing up with another person who needs a lot of care and attention is difficult. We appreciate your honesty and for sharing your grieving process with us. As a caregiver, your story has made me realize that I need to be more mindful of my own children, parents and other loved ones who may need me. Sometimes it’s hard to see their needs when I’m so wrapped up in the care of Mark. I appreciate your insights.