Laura’s Story, Part 9

Written by Christine Scott

It’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.

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 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.

I 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.

A Better Today

For decades, Decoration Day was observed on May 30. Businesses closed their doors to honor and decorate the graves of the American soldiers who had lost their lives in battle. It wasn’t until 1971 when the Uniform Monday Holiday Act passed, declaring Memorial Day to be observed on the last Monday in May in order to create a three-day weekend to honor our fallen soldiers. While the federal holiday isn’t about the start of summer, it has evolved into that over the past forty-five years.

May is also the month of graduation for many students and for many more it’s the end of a school year which adds to the excitement for the beginning of summer. The anticipation for summer activities and vacation brings some level of stress to most families and when you have a family member with special needs, the anxiety level may increase. Physical, mental and financial limitations can bring disappointment and frustrations when family time doesn’t work out the way we’d hoped.

Often the demands and responsibilities weigh heavily on just one person. Possibly without even realizing it, all of the caregiver’s attention and energy is directed on the one person who seems to have the most needs. However, as Christine reminded us in Laura’s Story, Part 7, there are others who need our care and devotion. As a caregiver, how can you meet the needs of the one with disabilities and not neglect your other loved ones? It’s a very difficult balancing act.

My children had a wise elementary school counselor who was concerned about their needs not being met after our tragic car accident. She recommended I spend some one-on-one time with each child weekly. Following her advice, I took turns taking one child out for ice-cream, bowling or some other activity while the other child stayed home with Mark for an hour or two. At the time, it seemed like a lot of effort on my part, not because I didn’t want to be with them, but I worried about Mark and the child left at home. Although I regret not being able to be more carefree with my children, I treasure the memories of the one-on-one time I spent with them.

In Laura’s Story, Part 6, Christine reminisces about their trip to Disneyland and another fun day at the local amusement park, Lagoon. This article reminded me of the importance of taking time to play with our families. As a caregiver it’s easy to feel like you don’t have the time or the money to do so. However, good memories are important for building a strong family, one that can withstand hardships.

Including Mark, even with his limitations, we tried to continue our summer traditions of barbeques, camping, roasting marshmallows over a campfire and a summer day trip to Lagoon with our kids. We also took a few extended trips over the years to Washington and Arkansas to visit parents, sisters and grandparents. Every outing was much harder and required more planning with Mark’s disabilities. I remember the stress of preparing to leave the house and feeling like my energy was completely drained when returning home from these family activities. However, my efforts are rewarded by good memories that far out-weigh the difficulties. Now that our kids are grown, I cherish those times more than I thought possible. I now realize the benefits of taking a break from our everyday responsibilities and the impact it had on our family’s well-being.

Memorial Weekend is more than looking forward to the start of summer and creating family memories. It’s a time to remember those who gave the ultimate gift. In their honor we should pursue peace and happiness. There is no better place to start than within our own families and building meaningful experiences.

Thank you to all the American military who died in wars fought for our freedoms so we could have a better today and tomorrow.

Please feel free to add any soldier remembrances or ways you’ve created worthwhile family memories.

Breathtakingly Perfect

I love this quote by Jeffrey R. Holland and the image is beautiful. I also believe “that the day will come when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind.” I appreciate the hope, comfort and joy this statement brings. I look forward in faith to that day.

Moving in a New Direction

Written by, Eric Reynolds

I suppose my mid-life crises were different from what many experience. My career path had been that of a businessman and salesman. In 2009 I was wrapped up in a real estate brokerage and watching the real estate world collapse around me. I overheard my wife talking with one of her friends about her husband’s dissatisfaction with his job running a “day program” or “sheltered workshop” for people with disabilities. I had a vague idea of what he did for work and thought to myself, “He doesn’t know how good he has it. The State will always pay their bills and they will never run out of money.” I determined that I should check into his business and he agreed to let me spend three days at his program in South Salt Lake. I left each day with a big grin on my face! I determined I would start a similar business in Utah County.

Through a series of painful and truly incredible events, I ended up as the Executive Director of Ability and Choice Services, Inc., which is owned by Dan Fazzini, Ph.D. out of Tulsa, OK. The company serves people with intellectual and developmental disabilities including people with brain injuries. We have three facilities in Utah located in South Salt Lake, Draper and Tooele.

In these facilities we offer a variety of work, educational and activity based opportunities for people with a variety of disabilities. In addition, our company offers supported living and supported employment services. These services help individuals who need one-on-one services to assist them in their home or work environments. Since taking the helm a few years ago, the company has grown rapidly. We now serve over 150 people in various capacities. We provide people with disabilities a safe, clean, and positive environment where they can continue to grow, socialize with others, participate in community events, and even make some money doing simple tasks. However, some national movements and trends are about to change our business quite dramatically.

“In 1999 a case went before the Supreme Court which resulted in a landmark decision for people with disabilities. The court concluded that Title II of the Americans with Disabilities Act gives people with disabilities the right to receive services in the most integrated setting possible.” Olmstead v. L.C. 527 U.S.581, 607 (1999)

A subsequent lawsuit in Oregon (Lane v. Kitzhaber) argued that the State of Oregon was “unnecessarily segregating the named plaintiffs and members of the plaintiff class in sheltered workshops.” It further argued that individuals with disabilities working with other individuals with disabilities is a segregation and a violation of the ADA and that these individuals with disabilities must have substantial interaction with non-disabled peers outside of a workshop environment.

As an activity and work based day program running in a workshop environment, it is becoming increasingly clear that the rules are quickly changing our business. Under direction of the federal government, Centers for Medicare and Medicaid Services (CMS), the Utah State Division of Services for People with Disabilities (DSPD) is developing a plan to help transition day programs, like ours, to better support individuals with disabilities in an integrated setting. This formal plan is to be released by the end of this year. The execution of this plan is to take up to four years. To get a jump start on this process, we have been interviewing the people we work with to better support them in their employment goals and objectives.

The contract/piece work we have performed in the past has been wonderful, but it is group work and is performed in a segregated environment. This group work in a segregated environment does not reflect the individual desires and interaction with non-disabled peers outside of our centers that the law is now requiring.  I expect this change to be fairly difficult.  A great deal of effort will be expended in promoting new activities in job sampling, job skills development and job placement.

“Customized Employment” in an integrated work setting with people who do not have disabilities is the goal. To find customized employment, we will consider a person’s interests, skill set, and the available opportunities that might work for them. We recognize, probably better than most, this proposition may seem like an impossible task for everyone we work with. I believe we will find successful employment for many individuals. However, we recognize that some individuals may not ever find successful employment in an integrated setting, but giving those people the opportunity to at least try can and should be considered successful. This success, I believe, will result in greater life fulfillment and happiness for those we serve.

What happens to day programs in the end? I’m not completely sure. My best guess is that they become employment training centers. This would be a place where a person with a disability, who is not currently employable, would go to learn new skills and abilities that will help make them more employable in the future. As DSPD introduces their plan in the next month or so, this will all become much clearer.

Working with people with disabilities can be challenging. However, I have found it is also super rewarding emotionally. I am truly grateful for the opportunity to be a small part of the lives of those we serve. I’m grateful for those who day-in and day-out are watching over those we love. To those of you in this service, I say: Thank you for your kindness. Thank you for your gentleness. Thank you for your understanding patience. Thank you for being one of life’s true heroes. You are the difference!

Thank you, Eric, for your article. I also add my thanks the the staff at Ability and Choice Services. Mark enjoys their friendship. I appreciate the safe, clean and positive atmosphere there and see daily how hard the staff works to meet each individual’s needs. Since Mark enjoys going there for the work aspect and not the activities, we are disappointed the contract work is coming to an end. With Mark’s seizures and physical limitations, I feel Mark is better supported in a segregated environment where staff is trained to deal with his and those of each individual with special needs. Working is very important to Mark and gives him self-worth. It’s difficult for me to understand how the integrated setting will work and be capable of meeting the special needs of some individuals with disabilities, including Mark. It will be interesting to see how this program evolves. I hope Ability and Choice Services or DSPD will give us an update on the development of this program. I’m keeping a positive attitude about the change—remembering that when one door closes another one opens.

Hope to see you on Tuesday— we’ll have tips on Customized Employment.

Exercises That Will Floor You

Over the past seventeen years, Mark’s exercise program has changed a bit as he has improved or his needs have changed. On Monday and Wednesday nights, when the volunteers come to help Mark, we start by getting him down on carpeted floor. This takes two people, one on each side.

Exercise tools: a 2′ x 4’sliding board, 2 barbell weights, 12 plastic cups, 2 wash cloths, folding chair, doorway bar and walker.

Together we do the following exercises:

1.  BRIDGING – While lying on his back with knees bent, Mark pushes his hips up as far as he can, holding a second and then lowers his hips back down. A person needs to hold Mark’s feet down so they don’t slide out and steady his legs, keeping his knees together. 25-50 times

2a. BUTTERFLIES – With arms straight out against the floor at shoulder height, with a weight in each hand, Mark lifts his arms straight up over the middle of his face. While Mark does this, a person can do the leg press (2b). 30 butterflies per each leg press

2b. LEG PRESS – Since Mark is in a wheelchair all day long it’s hard for him to straighten out his legs. Mark can do the butterfly exercise (2a) while a person is pressing the leg down to the floor with one hand above the knee and the other hand below the knee.  Hold each leg down for 30 seconds 

3.  HIP STRETCH – With knees bent and feet together, stretch the knees apart.  Hold 30 seconds – 3 times

***Take Mark’s shoes off and use the sliding board for exercises 4 and 5***

4.  KNEE BENDS – With Mark lying on his back with the sliding board under his legs and feet, a person assists Mark in sliding his foot towards his buttocks. Mark can do this exercise well with the right leg, but the left leg needs a lot of assistance. Sometimes another person has to move it a few times before Mark can do it on his own. Sometimes the brain does not kick in at all and on those times the helper needs to bend the left knee upwards and let Mark try to hold it there, without letting in slide down the board. 10 knee bends per leg

 5.  HIP FLEX & ABDUCT – With Mark lying on his back with the sliding board under both legs, slide 1 leg straight out at a time in a snow angel movement.  His left leg will need assistance. Each side 10 times

***Put Mark’s shoes back on***

6.  CRUNCHES – This exercise uses 12 plastic cups. For this exercise a person sitting on each side of Mark will help stabilize his bent knees. One holds the stacked cups at Mark’s shoulder height about two feet from his shoulder. Mark reaches across his body with his right hand to get one cup that is held on his left side. Once he has the cup, he puts it in his left hand and reaches across his body to set the cup on his right side. This exercise rotates the upper body while the lower body is stabilized.  He will move the stack of cups to one side and then back again.

***Mark rolls over on his stomach with a towel placed under his face for comfort***

7.  BACKWARD SHOULDER STRETCH – With arms down by his side, Mark lifts his arms upward together and then back down. 25 times

8.  OUTWARD SHOULDER STRETCH – Both arms straight out at shoulder height. Hold stretch for at least 60-90 seconds

9.  SUPERMAN STRETCH – Both arms straight up over his head like superman. Hold stretch for at least 60 seconds

10. QUAD STRETCH – While lying on his stomach, Mark bends his knee backwards trying to kick his buttocks. Each side15 times

11. PUSH UPS – While on his stomach and hands under his shoulders, Mark should push up.  He has a hard time with this exercise, but it’s good for him to try. 15 times

12. BALANCE ON ALL FOURS – While one person is helping Mark push back with his arms, another will help bend Mark’s knees forward and lift him up so that he is balancing on his knees and hands. This is necessary because Mark is so ridged. Hold for 60 seconds

Mark doing tall kneeling exercise with Lee & Kathy Sadler

13. BALANCING – Use the back side of a folding chair for this exercise. While Mark is on his hands and knees he shifts his weight to climb the back parts of the folding chair, similar to climbing a ladder with his hands. 3-5 times

14. TALL KNEELING – Again, with the use of the back side of the folding chair, Mark wil climb up until he is on his knees. Move the chair and have Mark balance on his knees. A person needs to be on each side of Mark in case he loses his balance. Balance at least 60 seconds without holding onto the chair.

15. STANDING – From the tall kneeling position, with a person on each side they will assist Mark in standing up.

16. BAR STANDING – We have a bar that runs across a doorway between braces. We also have a foot brace for Mark’s feet while he does this exercise. Mark stands, holding onto the bar for at least 60 seconds. It takes another person to assist him up to the bar and give verbal cues in keeping his balance with upright posture and straight knees.

17. WALKING WITH A WALKER – Mark can walk with some verbal cues and support.  One person should follow behind him with the wheelchair so he can rest when needed. This is done around the house or outside when weather permits. Usually takes 5 to 10 minutes and is Mark’s goal for the night.

***The total time for exercise routine is 45 – 60 minutes***

Click below to see Mark walk.