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.
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.
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.