Tender Mercies Amid the Challenges

Written by Peggy Peterson Martin

Peggy Dave 2014My husband, David Paul Martin, age 74, passed away the morning of November 5, 2016 at a Hospice Facility in Las Vegas, Nevada.

It all started with blood clots in early 2016… first one in his right leg, then one in his neck, then two in his left leg. Dave’s Oncologist couldn’t figure out why a 74 year-old man would suddenly start getting blood clots. She scheduled him for a colonoscopy, because he had colon cancer in 2003, and an endoscopy which they were supposed to do the same day. However, the doctor didn’t receive the orders for the endoscopy in time, so he only did the colonoscopy, which was clear.

Then on September 25, 2016, Dave had a stroke and was taken to the hospital by ambulance. He was expected to make a full recovery and released, but he developed pain in his side and back which kept getting worse. He was also unable to swallow solid food. Less than a month after his stroke, he was frustrated by the pain and liquid diet. Unable to get satisfactory answers from his Primary Care Physician, he asked to be taken to the ER. He was admitted and spent eight days in the hospital where an endoscopy was finally performed, which showed a large tumor at the base of his esophagus. It turned out to be stage 4 esophageal cancer and had metastasized to his liver. We found out it was the cancer that caused the blood clots and stroke! Dave was allowed to go home to consider his treatment options.

Martin's last family picture

2016, “Our last family picture,” Dave is in a white shirt and tie while the rest of us are in our grubbies because he wanted to have an obituary picture taken. We used something else, however. The blanket is covering his pajama bottoms!

Feeling a sense of urgency, all seven kids arrived within three days, including our son, David, who had recently moved to St. Thomas, Virgin Islands. This was a beautiful weekend together. Despite his almost constant pain, we shared many tender moments, laughs, tears, and memories. It was also a difficult weekend because Dave decided to forgo chemotherapy which would only have limited effectiveness at best. Hospice was called a couple of days later. Dave was getting weaker, but his wish was to spend his remaining days at home. Unfortunately, hospice couldn’t give him the medication he needed to manage his pain at home, so they transported him to their care facility in Las Vegas. He never regained consciousness once they medicated him. He passed away only ten days after his diagnosis. Though this was a very difficult time, we recognized several tender mercies from the Lord.

Martin's KidsA year earlier, our daughter, Missy, and her family surprised us and drove all the way from their home in Charleston, Illinois, to show up at our son, Steve’s house in Herriman, Utah, for Thanksgiving dinner. All our other children were there, and it was the first time in over twenty years that we’d all been together for Thanksgiving. Dave was particularly touched and told Missy, “I’ll never forget this special surprise.”

Martin GrandkidsIn June of 2016, despite pain from two blood clots in his leg, Dave and I made a trip to Salt Lake City to see our kids and 23 grandchildren, including Missy and her family who were there on vacation. Jeff and his family from Henderson, Nevada, also just happened to be there for his wife’s family reunion. Our son, Rob, invited us to do some temple work with him. When we agreed, he decided to open the invitation to his siblings as well. Maybe it was Rob’s offer to buy everyone lunch, but all seven of our children and all but two of their spouses joined us in the Mount Timpanogos Temple that day. Having our whole family together was such a special experience, and everyone felt the significance and joy of being together there. It just happened to be our 49th Wedding Anniversary! This is a memory I especially cherish since we didn’t make it to our 50th which would have been next month.

Dave & Peggy 1967As soon as Dave came home from the hospital after the devastating diagnosis, our son, Rob, took off work and stayed at our home for over two weeks, not leaving until after the funeral. I couldn’t have done it without him. He was a rock of strength and faith. He helped Dave with many of his physical needs which would have been difficult for me. While Dave was on his deathbed, we had a sewer flood through our house causing significant damage, both to the main floor and the basement. Rob discovered it and was there to help me bail water, trying to keep it from going into the bedroom where Dave was sleeping. Though we didn’t succeed, Dave never fully realized the extent of what had happened. Rob and some of our other children were invaluable in handling the mess and dealing with the plumber, restoration company, and insurance matters.

A tender mercy Dave had in his final days is that he was visited on two occasions by his deceased parents and brother, Leonard, who was killed while serving a mission for our church in Pennsylvania. This brought him great comfort and made him feel he would be with them again when he died.

Dave never became a burden. It was a pleasure to care for him. Several of our kids stayed in our home during Dave’s last few days. They took turns caring for him at night and spending time with him during the day. He was uncomfortable most of the time and in obvious pain, so it was heart wrenching to feel so helpless, but we were willing to do anything to give him even a moment of relief. His rapid decline and death were both devastating and merciful…devastating because it happened so fast and we felt cheated, hardly knowing how to prepare for or deal with our loss…merciful because he wasn’t made to suffer any longer.

We all feel gratitude for the few days we had with our dear husband and father before his passing. His love of family, great example, words of wisdom, and the blessing of serving him will stay with us long after the grief has passed.

***************

Dave and Peggy were one of the first ones to welcome us to our new neighborhood in Draper, Utah in the year 1996. Our friendship grew as Peggy and I participated regularly in a line dancing class for exercise. We also enjoyed serving together in a women’s organization for our church. In 2002, they moved to a new home in Boulder City, Nevada. Fortunately, the miles between us did not break the friendship bond. I treasure the memory of a few surprise visits when they came to Utah to see their kids. They always left with an open invitation for us to come to Nevada and stay with them. Dave encouraged us by commenting their home was wheelchair accessible. I regret we never made the trip. 

On this Memorial Weekend, I thank Peggy for recognizing and sharing her tender mercies during such a difficult time. I cherish our friendship and appreciate that when we’re together, it doesn’t seem like years have passed. We easily pick up right where we left off! 

 

 

 

Nurturing Relationships

Humans are social beings and no one is totally self-sufficient. As much as we strive to be independent and admire those who appear to be, it’s sobering to realize in order to accomplish some things we need help. When I read, listen or ponder on my own or other’s life experiences, I realized how much we need one another to succeed. As humbling as the fact is, it also encourages me to reach out and give back to others.

Greg & Laura LakeGreg and Laura are wonderful examples of giving back to others. They shared their story with us this past week. Laura talked about some of the mistakes she’d made by saying, “I am fiercely independent and a stubborn woman. In the beginning I turned family and friends away. I said, ‘don’t fly up here, I’m fine’. Then, ‘we don’t need meals, I’ve got this covered.’”

“By turning help down, I alienated the very people Greg and I needed the most. I felt neglected, isolated, abandoned, ignored, lonely, unsupported, disrespected and misunderstood. When I needed family and friends the most, they were all gone.”

How often do we turn away our friends and family because we don’t know how to accept help or because we want to appear stronger than we really are? It’s much more enjoyable to give rather than receive help. When our lives are out of control, it’s scary and we hope we can make it better by managing things on our own. We may not understand ourselves what we need or how others can help so we push the people we want in our lives away.

The words of John Donne (1572-1631) a Jacobean poet and preacher came to mind, “No man is an island entire of itself; every man is a piece of the continent, a part of the main…”

When tragedy happens it’s hard to think about how it’s affecting our family and friends. We may be so wrapped up in our own worry and grief we are blind to the distress it has on others. They may feel left out or don’t know what to do or say.  They may not know how to help if we’re not open and honest with them.

I appreciated Laura’s advice to let people into our lives by letting them help and also by reaching out to others. She said, “It will reward you and them at a time when they are lost as well.  It will strengthen your relationships, not erode them.  You need help – take it!  They need to help!  Give them the opportunity! I challenge you to SAY YES! Learn from our mistakes and say YES!  YES I need help.  YES I could use that dinner.  YES I would love to join that group or club!  YES I could use a ride to my Dr.’s office or therapy appointment.  YES I would love to go on a walk, or to have you push me while you go on a walk.  Take a chance on making a new friend or rebuilding a relationship. As you do, opportunities, love and warmth will envelope you and your human relationships will grow!”

Get Well CardsI learn so much from others and appreciate my own life experiences. Today, in church, I witnessed many people nurturing their relationship with my mother, who has been too sick with back and hip pain to attend church for four months. Under better health circumstances, she has given so much love and service and is a great example to me of building friendships by reaching out to others. Our neighbors and friends ask me often how she is doing and I try to relay their concern to her. Since we live in the same home and attend the same church, I was given many cards to give to her expressing their love and concern. The children also made a big get well poster for her and wrote notes and signed it in their primary class. My mother’s spirit Get Well Primaryis raised up by the thoughtfulness of so many. Seeing the love that others have for my mother also lifted my spirit. I’m grateful for all the wonderful examples I see and have felt in my own life of nurturing relationships. Today, I realized it can be as simple as writing a note to someone.

 

In your life what personal acts illustrate nurturing a relationship? What effect did it have on you when you were receiving or giving the nurturing?

What Doesn’t Kill Us Makes Us Stronger, Part 2

I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience. They spoke last week at a combined Survivor and Caregivers Support Group sharing what they’ve learned.

Written by Laura Nordfelt

Greg & Laura-landing pad.pngThe medical helicopter which came to life-flight Greg was very old and small. In fact, half of his body was in the nose of the aircraft. The ventilator was broken and one of the paramedics was trying to bag Greg (it seemed sporadically) while trying to preform many other tasks. I mentioned to her I was an EMT and asked her if I could do the bagging for her. She agreed and I continued on every 4 seconds like I was trained to do in school. The flight seemed to take forever (I worried we were going to Canada!) and only looked out the window once or twice. When we started to land, all I saw was a “tough shed” structure on top of a roof.  Medical people ran out to get Greg and down an elevator we all went and into the Emergency Department. By the time I felt comfortable enough to leave his side, I asked, “Where are we?” When they told me Coeur d’Alene, ID, I told them I needed to take Greg to Salt Lake City, but the doctor told me he would not survive the flight. I slumped down against the wall and lost it.

I made mistakes. I am fiercely independent and a stubborn woman. In the beginning I turned family and friends away. I said “don’t fly up here, I’m fine”. Then, “we don’t need meals, I’ve got this covered.” Not only did I watch him crash, but I kept him alive for 45 minutes until the paramedics arrived. I was a mess! I had post-traumatic stress disorder (PTSD) and I was in a cocoon as much as Greg was in a coma.

An Executive Vice President from Greg’s work came to the hospital to visit and I cut her off down the hall and visited with her. There’s no way I was going to let her see the condition Greg was in. I was so worried that he was going to lose his job. I posted a sign “Family Only” on Greg’s door at the hospital. Visitors had to check with me or the nurse before entering his room. I took the phone off the wall and put it in a drawer and took his cell phone away from him. He wanted to call his office to “check on things” all the time. I was worried he’d say something inappropriate.

Greg & Laura-tableWhen Greg left the hospital, I sent out a message on Facebook telling our friends that Greg needed time to rehab and recover so if they could wait to visit, that would be much appreciated. I really only meant it for acquaintances, thinking our close friends wouldn’t take it to heart. A few months down the road some dear friends of ours called and asked if they could bring dinner and come for a visit. I was thrilled! Frankly I had wondered why they hadn’t called sooner.

While we were setting up dinner, she told me they would have come sooner, but wanted to respect my wishes of giving us our space. I said, “Oh, I didn’t mean you guys!” I realized then that I had alienated the very people Greg and I needed the most. Greg’s co-workers later expressed the same emotions. If only they’d known what to do. They wanted to help in any way, but we pushed them away.

I own a business and I needed someone to sit with Greg or run him to therapy appointments, but I said “NO, I’m fine”. I really wasn’t fine, but I wanted to be and I didn’t know how to let them help. Most of it was my fault, but some of it was not.  Caregivers leave the hospital with their tool bags pretty much empty. I had to earn my hammer, saw and screwdriver the hard way. I felt neglected, isolated, abandoned, ignored, lonely, unsupported, disrespected and misunderstood. When I needed family and friends the most, they were all gone.

Greg & Laura-walkIn order to heal, I had to get outside of myself. I started the first ever Caregiver Group in Utah as a survival mechanism. As much as I wanted to give back to the community, I needed other caregivers. As I spent time listening to their stories, I felt not so overcome by my own problems. I felt empathy and compassion. When “in the moment” of caring for caregivers and survivors, their hurdles felt more important than my own. When we get caught up in these “feel good” experiences, we don’t need anything in return. I also joined the Board of the Brain Injury Alliance of Utah. This is my passion now!

Another way I healed is a couple of years ago a friend asked me to join her book club. I love to read, but I was scared at first because I only knew her and no one else. I went one time and almost did not go back, but forced myself to hang in there. These women are now very near and dear to my heart. I’ve read many wonderful books which I never would have picked up on my own. The social setting has its benefits as well. We trade off hosting dinner so I’m learning new recipes. I work on my listening skills and forget my problems for a few hours. By the very nature of getting together with women, it forces me to get out of my pajamas. Therefore, I get semi-dressed up, put on my makeup and lipstick and wear my fun jewelry. All of this is very good for my soul!

Thank you, Laura, for sharing your experiences and what you’ve learned. Friedrich Nietzsche was right, “That which does not kill us makes us stronger.”  I see that in Greg and Laura’s life and hope you see that truth in your own life.

My Broken Habit

writingloveI can’t believe it’s been over three months since I’ve written on Uniting Caregivers. I’ve missed it and the therapeutic nature writing is for me, but as with any good habit, they are hard to start and easy to break. Why is the opposite true with bad habits? They’re too easy to start and hard to break. Now that I’ve broken my writing habit, I’m struggling to know where and how to restart.

A lot has happened in the past few months. December is always a crazy month with it being the end of the year and the holidays thrown in the mix with related parties. It’s joyful and stressful all wrapped up at the same time. This year my mom, who is the supreme organizer and chief executive of all our family gatherings, was not feeling well so my siblings and I tried to step up to the task. We enjoyed our time together, but nobody can fill my mother’s shoes.

Arthritis and a bad hip are keeping my mother in constant pain and making it very difficult for her to move. Using a walker has been a hard recommendation for her to follow, but for safety sake’s she reluctantly agreed. My mother has always been the ultimate caregiver to those around her, yet it’s difficult for her to accept help from others. Switching roles is a hard transition for all of us, but there isn’t a better alternative than to accept health problems and make the best out of life challenges. Therapy and cortisone shots are her best hope now and she’s doing both.

Dad works hard to keep up with his new household responsibilities in addition to all his old ones. Assisting Mom with cooking meals and doing laundry along with driving to every doctor and therapy appointment can be strenuous. Living in the same household with them has been a blessing and I help as much as I can along with four wonderful siblings who all live nearby. Unfortunately, Dad recently developed pneumonia. We’ve all stepped up a little more to help out and as our family works together, our love and appreciation grows stronger.

Caregiving comes in all sorts of intensity sizes and experiences. Soon after Thanksgiving, our twenty-year-old, outdoor cat became very sick. I love all animals and have had many in my lifetime. Several years ago I started suffering with asthma and my complete dependence on breathing and the adverse impact that animals have on my airways made it necessary for me to love them at a distance. What I wish could be indoors had to be outdoors and as our beloved pets passed on, we haven’t replaced them.

Sammy

Sammy, February 2017

Sammy is a beautiful Siamese cat with more than nine lives. He has stayed with us longer than either of our two children, who both left home at eighteen years. He isn’t cherished more than our children, but still cherished for being a loyal friend day in and day out for a very long time. When I pulled our van into the garage, which is also Sammy’s apartment and he didn’t come out to greet us, I was worried. I found him in a corner looking distraught and unloved with his matted hair. I grabbed his hairbrush and with the first gentle brush stroke he nearly fell over. I put him in his bed and brought it in the house. He lay motionless for most of the night, which I know because I tried to sleep on the couch by his bed with one eye continually on him. I expected him to die that night.

I don’t know for sure what happened to Sammy, there was no blood or noticeable injury, but I suspected a cat fight. There had been a black cat hanging around, which Mark named Spook Impostor after a similar adored black cat we had thirty-five years ago. This particular night we saw him leaving the yard as we drove in.

The next day Katie helped me give Sammy a bath and we inspected his body for wounds. We did find a couple of puncture wounds by his right shoulder, but they didn’t appear to be bad. Days went by where he only woke up to eat and to use the litter box. I continued daily breathing treatments and shed many tears because I didn’t expect he’d live much longer and it would be the end of the pet era of my life.

Some family and friends suggested I put him down. I had to do that eight years ago with our cat, Figaro and that tied my stomach up in knots along with giving me a bad asthma attack from the vets office and all the animal dander in the air. Since Sammy didn’t seem to be suffering in pain, I wanted him to go naturally.

Nearly four months later, I continue to give Sammy hospice care. He’s had a cyst fill with infection, drain and heal, then come back four times now. He has gained weight and strength, only to lose it again. It’s a roller-coaster ride, but I want to care for him as an expression of my appreciation for his long-time companionship.

Dad & Sammy

Dad with Sammy December 2016

Amazingly, my asthma is doing better. I rarely need breathing treatments now. We did get an air purifier, which I’m sure has helped my allergies, along with hypoallergenic wipes I use on him almost daily. I’m enjoying this time with Sammy and he is the perfect house cat. He’s too old to jump up on furniture or counters. I know his days are numbered and I enjoy every day we have with him.

Aging in any life is hard. As I try to help and support my loved ones through it, my life is enriched. So as much as I enjoy writing, providing for the needs and cares of my family will come first while I try to mend my broken writing habit.

Carry On

July is full of outdoor activities and celebrations that last all month long in Utah. It’s my favorite time of year with family reunions, outdoor plays, concerts, parades and many festivities to look forward to. The sun rises early, which makes it easier for me to do also. The weather is usually sunny and the daylight lasts until 9 pm, making this month the one to accomplish the most outside. I always have great aspirations for this month.

This year we started the month out by driving to Vancouver, Washington with our daughter, Katie. We enjoyed visiting with Mom Wilson, Karen and Mark Ray. Lucky for us our son, Christopher, lives just across the Columbia River in Portland, Oregon making our visit quadrupled the fun. We enjoyed an Independence Day celebration at the park with energetic music, food trailers, beautiful fireworks and the great company of family. It’s always hard to say good-bye to loved ones especially without knowing when we’ll see them again. We made the long trek home in about fourteen hours, which includes our fuel and rest stops.

My asthma flared up during our trip and I struggled more than usual to get it under control. When we returned home I went to the doctor for what I thought would be just a medication change. I left Mark home alone, expecting it to be a short doctor’s visit since I was her second appointment of the day. My oxygen level was low so they gave me a breathing treatment and oxygen, which confined me to the room until my oxygen level reached normal.

Two hours later, I left the room anxious to get back to work and to Mark. Remodeling construction had started near the large entrance/exit sliding glass door of the building. With no cone or sign before it, I didn’t see the piece of metal track that had been attached to the tile floor during my doctor’s appointment. I tripped and fell on it, landing hard on the tile, dislocating my right shoulder.

Dislocated shoulder 1

Dislocated Shoulder 07/08/16

My body wrenched in pain like I’d never felt before. I tried to get up, but couldn’t. A man came to my aide and before I knew it, I was sitting in a wheelchair and whisked to the Urgent Care Clinic in the building.

I heard someone report I was in and out of consciousness and my vitals dropped. “Call an ambulance; she needs to go to the hospital.”

“Please put my shoulder back in place,” I pleaded. “I need to get back home to my husband.”

The look on the doctor’s face helped me realized how silly the statement sounded, so I explained. “My husband has a traumatic brain injury and is confined to a wheelchair. He depends on me to get him in and out of the chair.”

“I don’t believe you’re going to be able to lift him for six to eight weeks,” he said while placing an IV for fluids and another one for morphine.

The first stranger who rushed to my aide looked at me drenched in perspiration from the pain and in sympathy said, “I’m sorry. Don’t worry about the medical cost. We’ll take care of you.” I assume he was the job foreman.

Submissive to all the medical team requests, I moved every which way they asked as they transferred me to the stretcher and rushed me to the hospital. For the next three hours the only thing on my mind was getting my shoulder back in place. My right arm went from feeling like it weighed 100 pounds, to numbness, to sharp, shooting pains running down it. I was sure my arm was dying and at times I thought death would be my only relief. No matter how many times I begged them to fix my shoulder there were tests that needed to be done to make sure I didn’t need surgery or an x-ray that had to be taken to show the best way to maneuver it back in place. Finally I was given a conscious sedation and like Humpty Dumpty who fell off the wall, I was put back together again. Instant relief followed, but then came the body shakes, which I will take anytime over the pain of a totally dislocated joint.

Located Shoulder 2

Healing shoulder, 07/19/16. The bump on my clavicle is from the break 25 years ago. I’m glad it didn’t break again!

I’m an aging caregiver who is dedicated to the love of my life. My worst fear is not being physically capable of caring for him. I’ve always known it’s a possibility, but I don’t know how to prepare for it. I know the options and none of them feel right. Even the option of relying on family and friends for help ties my stomach up in knots.

This year the sunny month of July has been the darkest I have felt in a long time. Depressing thoughts linger because my body can’t do what it wants to do. With my arm splinted in a sling and strapped to my side to allow torn tendons and ligaments to heal, my mind keeps focusing on the negative aspects of my life. Having to depend on others to help with Mark’s care for several weeks makes it hard for my heart to find hope in a brighter future. How do I dig out of this gloomy place and feel the sunshine in my life again?

brigham-young-and-pioneers-entering-the-valleyAnnually on July 24th, our state honors the Mormon pioneers who arrived in the Salt Lake Valley in 1847. I imagine after pulling handcarts or driving wagons with oxen or horses across the plains more than a thousand miles, the pioneers were happy to settle the desert landscape now known as Utah. Last week our celebration reminded me their trek exemplifies courage and faith. Their stories inspire me. They endured harsh weather, death of loved ones and starvation as their food and water supplies diminished.  Nothing had prepared the majority of these travelers for the exhaustion, illnesses and injuries they would suffer. They were beginners in a new territory, learning a new way of life.

I see similarities between my caregiving trek and my pioneer ancestors who walked approximately 1,248 miles from Nauvoo, Illinois. Although we thankfully have the comfort of a home with plenty of food and water, nothing had prepared me for the anxiety and exhaustion of caring for another, or the illnesses and injuries which keep arising. As we make it through one challenge only to receive another, I continue to be a beginner in a new territory, learning a new way of life that most people can’t fully understand. I am a modern-day pioneer and so are you as we struggle through our own personal trek. This connection gives me courage and faith to carry on.

The pioneers didn’t know how or when their journey would end. Similarly, I don’t know how or when ours will end. Like my ancestors’ examples, I’m committing to carry on with faith in every footstep for a brighter future. Even if we don’t reach our desired destination in this life, I believe we’ll be blessed beyond the grave, free from the harsh physical ailments which we have endured. With confidence, I picture this celebration far grander than I’ve ever witnessed and possibly can even imagine.

Just as I started the month of July with great aspirations, I end it with the same for the future and will carry on as best I can.

 

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.

Laura’s Story, Part 7

Written by Christine Scott

Christine

Christine

Everyone is familiar with the pop song, Stronger (What Doesn’t Kill You) by Kelly Clarkson.  I’ve heard the quote, “what doesn’t kill you makes you stronger” repeated a lot over the past few years. I don’t know if the popularity of the quote came from the song, but I’ve decided to make it my mantra as I approach the very difficult topic of sharing my adolescent and teen years with you. Since the fact I’m here writing this, I’m living, breathing proof that those years didn’t kill me—so I must be stronger.

In many ways I was a normal adolescent girl. My hang-ups were typical. I fought with my mom. I felt awkward. I wanted to make friends and find a boyfriend. I liked all the popular music and wanted to dress in the current brands. I wished I was prettier, funnier, and more popular. I didn’t know my talents. In a lot of ways I was lost—similar to many other kids my age.

Laura teenager

Laura

However, I had a mentally disabled sister I didn’t want others to know about. I’d moved past the point where she was my sister and I’d stick up for her—my reputation was on the line. I was afraid if someone found out about her they’d think something was wrong with me too.

I remember my sister chasing me down the aisle at Harmon’s grocery store and pulling my hair. I remember the humiliation. I remember feeling that maybe it was my fault for not standing up for myself. My brother was bigger than her and she didn’t pick on him like she did me. Should I have been more of a fighter? I’ve always felt like I should be more of a fighter. That I’m too weak, that I let others take advantage of me. And maybe I have.

But I suffered a unique form of abuse—one you don’t hear about. One that doesn’t have a name or a definition.

It wasn’t until just a few years ago that I realized I was an abuse victim. I suffered abuse at my sister’s hands and neglect from my mom’s failure to act in a way that protected me. I realize my mom was overwhelmed with Laura’s behavior problems, but it wasn’t until later she sought help by medicating Laura—and I don’t understand why she waited. I do remember her saying that Laura was so sweet mannered at school that the teachers and whoever else she sought help from, didn’t believe her about the behavior problems at home. Maybe if my mom had a support system, maybe things would have been different.

Laura teenager1

Laura

Laura ruled the roost at our house. Mom did everything to appease Laura. From letting her watch the shows she wanted to Mom staying home from work or whatever outing we’d planned when Laura was having an “off” day. She didn’t expect her to do chores or respect the needs of others. Mom’s coping strategies allowed Laura to have terrible tantrums, which were often focused at me.

To keep the peace, my mom told me to go to my room. If I was out of sight, Laura didn’t torment me as much. From my alone time, I learned to love reading and I read a lot of romance books. I became an introvert, which isn’t necessarily a bad thing.

The worst part was the important interactions I missed. Family time. Time spent with my mom teaching me and believing in me and my abilities. I wish my mom would have made more time for me instead of taking the easy road with disciplining Laura. I wish she would have made time for herself, for friendships, for exploring her own talents and interests. Maybe if she had, she would have expected more from Laura. Maybe she would have disciplined her so our family could have been more functional.

But these are only wishes for a different outcome. To be healthy in this life you have to take what you’ve been given and make the best of it.  In retrospect, I wouldn’t trade growing up with Laura. The experience gave me insights I wouldn’t have had otherwise. It’s led me down the path to become an occupational therapy assistant so I can make a difference in situations such as these.

And there’s the proof that I am stronger, but what’s even better—I found a way to thrive despite the challenges I’ve faced.

Thank you, Christine, for being a guest author. I enjoy reading your insights on the challenges and rewards of growing up in a caregiving household where another family member requires so much of the care due to mental and physical health disability. I imagine there’s others who can relate and have been neglected due to the main caregiver’s extreme demands. I’m sorry you were one of them.

For me, as a caregiver, this article spotlights the importance of respite care. Time away from the problems can clear the vision. However, it’s hard to find people who qualify or are willing to take care of the needs of our loved one while the caregiver gets that much needed break.

For our Tip next week, we will brainstorm and list some ways a caregiver can find the help needed for some time to refuel, recharge and be revived.

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.