A Caregiver’s Button Box

Do you need ideas on how to replenish, recharge and renew as a caregiver? This month at our caregiver’s support group, Kerrie Neu  gave us lots of ideas. She agreed to let me share them here. With her 19 years of caregiving experience she discussed how to find joy among the challenges. Recognizing that every situation is different, these are some of the points she talked about.

noone@graniteschools.orgWritten by Kerrie Neu

“Just like my grandmother’s button box, we have to find the right button that fits the situation.  What may fit with one person may not fit another. Don’t feel guilty if you try something that other people like to do, but it just doesn’t bring you joy.  It’s okay.  I once attended a quilting class that many of my friends love.  I see their excitement and love their quilts.  However, the first month I went I stressed so much about trying to get my block ready for the next month, that I finally realized this was causing me more stress than joy.  For me, it was not the right button. Instead of acting like Cinderella’s wicked stepsisters who tried to make the glass slipper fit, we can simply find another shoe. We don’t have to fit the shoe in order to find joy and a happy ending, we can find the shoe that fits us and our situations.

escape​Let’s talk about some buttons then. First of all, Brenet Brown talks about buttons we have to be careful of. These are the easy buttons or escape buttons that we use to numb and not think about stress. Often they are self-destructive and don’t replenish us. We may think they momentarily help us forget or be happy, but in the end they usually don’t. For me, one of those escape buttons is TV binge watching. I find when I binge watch I ended up becoming cranky with my family. The TV shows themselves aren’t bad, but what I do with them does not nourish me. So I have to be careful of how often I use those easy buttons.

Neu CarsOn the flip side, Brenet Brown talks about reset buttons, or what I called recharge buttons. These are things that we can do to recharge and replenish ourselves. As caregivers these are critical in order to help us be able to continue to give to our loved ones. We talked about the lesson learned from Lightning McQueen in the movie Cars. When he chose to skip his pit stop in the race at the beginning of the movie, he suffered the consequence in the last lap when he blew two tires and ended up at the finish line with his tongue hanging out and his car in sad shape. He had to learn the lesson of working with others and taking time for maintenance. As caregivers, we must regularly take time to find joy and renew ourselves.

There are many ways to recharge. Sometimes we can do little things that only take moments like drinking a glass of water, breathing, watching wildlife, enjoying nature, watching a child, or reading a poem or inspiring quote. Other times we carve out a little more time to connect with a friend, take a walk, play a game, read a book, or create something. Periodically, it’s also good to plan for some extended time to get away and visit with family, attend a conference, or take a vacation. It’s important to find a balance in our life because we cannot give from an empty cup.  ​

Nue Bike TourOver the last 19 years, we have explored many things to see what brings us joy.  Some of our explorations were quite successful, like our bike trip to the Hiawatha Trail in Montana. Others were not so successful, like our bike tour of London.

Nue Bike Tour 1In each case, though, we learned something important and kept exploring. Never give up. Just this year we discovered that Laurent loves to listen to audio books and to do puzzles. Sometimes it takes a little thought, creativity, and extra planning to be able to do something with the one you’re giving care to, but in the end it is so worth it.

Neu Joy​Wes Stafford, former president and CEO of Compassion International said, ‘Joy is a decision, a really brave one, about how you are going to respond to life.’ Life’s hard. Choose joy anyway.”

My take away from this presentation is to be mindful of the escape, easy or numbing buttons which take me nowhere. Instead, look for the creative buttons that replenish, recharge and renew me as a caregiver. The buttons which work for me may be different from the buttons that work for you. What activities bring you joy? Writing is one of mine.

On Thursday, I will post more ideas Kerrie shared with us. You are bound to find some new buttons to try. 

To see the full presentation slides, click here.

To read more from Kerrie Neu see neusounds.com

 

 

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! 

 

 

 

Embrace Your Fears

LauriA good friend, Lauri Schoenfeld, spoke at our caregivers group on April 20, 2017 at the Intermountain Medical Center (IMC) in Murray.  She gave an excellent presentation on embracing fear to move forward. She addressed what holds us back and how to overcome it so we can be our best selves. She is positive, fun and energetic.

Lauri is a wife, mother of three, child abuse survivor, scoliosis survivor and has dealt with massive depression. She revealed four tips to help us overcome our fears to enable progression. 

Written By: Lauri Schoenfeld

1. Recognize your fear and call out to it. Get clear what you’re afraid of. It can be anything. A lot of times our fears are like an onion that has multiple layers. Is it spiders, clowns, natural disasters, death, being betrayed, getting too close to someone, loss, or rejection.

  • What happened to create this fear?
  • How is it holding you back?

If you’re going to let go of fear you have to recognize it first. It’s called gaining consciousness. When you start to feel yourself getting a little anxious or fearful, stop and take notice. Think to yourself, “Oh, here it is. I’m starting to get freaked out.” Then instead of reacting on your instant emotion, breathe and see what’s going on around you that could be creating this element for you. Watch how your body reacts to the situation for future understanding. By doing this you start to disengage from the fear as the ultimate reality. It helps you to realize that you are NOT your fear.

Fear is like a fire alarm alerting you to check something out. It propels us into action. This is good, not bad. We need this. Julia Cameron says, “Fear is not something to meditate and medicate away. It is something to accept and explore.”

Elizabeth Gilbert, author of Eat, Pray, Love and Big Magic, says that when she’s writing and feels fear sit on her shoulder, she acknowledges it and says, “Thank you for worrying about me today, but I don’t need you” and then she continues working. She doesn’t allow fear to control her choices or future because she is aware that she needs fear at times, but at other times she does not.

The ego is the part of your mind that stays focused on the past. It feeds you all the time with messages like “Watch out. It’s going to happen again.” It’s a sly trick which uses our fear that we will indeed hurt again. Instead of being open to different experiences and outcomes, we halt. Most of us are afraid of fear because so many of our experiences with fear have been negative. In reality, it is a very positive and useful tool.

Fear2. Face your fears. You have to surrender to them and become willing to create a different reality. Your life will not turn out differently unless you do something different.

  • What are your truths? (Example: Mine are being a child abuse survivor, scoliosis survivor, a writer, speaker, and a mom.)
  • Write down your truths and start peeling back the layers of the onion one step at a time. Don’t try to take it all at once as your truths are going to be deep, hard and emotional. Be gentle with yourself as you unfold each layer.

Courage

  • If you’re afraid of speaking, go speak. If you’re afraid of snakes, pet one, read a book about one or go to an aquarium and stand in front of the tank.
  • Encourage yourself to do one scary thing each day. It doesn’t need to be large. Every step forward is something to be proud of.
  • Courage, confidence and even fearlessness are the result of facing, embracing and dancing with fear, looking it straight in the eye and having a partnership with it.

3. Learn to love yourself and appreciate all that you are. Once I began nourishing myself, the fears I felt didn’t seem to control my life anymore. I began to have clarity on how to handle tough situations and challenges with more grace, patience and positivity. I began taking charge of what I wanted in my life.

Love YourselfIdeas that work for me:

  • Motivational videos – Brene Brown, Elizabeth Gilbert, and Tony Robbins are a few of my favorite speakers. Check out TEDTalks.
  • Gratitude journal – No matter how tough things feel, there’s ALWAYS something to be grateful for. Looking for those things gives us the opportunity to see that we can indeed find beauty even in the darkest moments.
  • Positive Affirmations – Write five things that you want to start shifting in your mind in a positive fashion. One positive thing per card. If you have negative internal dialogue that you don’t think you’re very smart, write on your card “I’m Smart.” Use reverse psychology and say these five affirmations EVERY SINGLE DAY. It’s important to say those five things like you mean it.
  • Take time out to breathe – I call these moments “Lauri Time.” Depending on the week, sometimes I can do an hour or sometimes its fifteen minutes, but do something that calms your spirits, is enjoyable, fun or creative. Whatever you need in that moment, give it to yourself. You deserve to be treated with gentle loving care too. Write a list of twenty things that you really like and once a week, treat yourself to one of those things.
  • Read uplifting books – There are so many to check out. Chicken Soup for the Soul books are some of my favorite. Form a book club with a group and read a different inspirational book each week.
  • Get an accountability/support buddy – It’s important to find someone you can share your progress with. Every step, whether it’s big or small, is important to acknowledge.
  • Surround yourself with people who can relate to you and the things you’re going through – Having this support system and team will help to keep you grounded, supported and appreciated.

Move Foreward4. Be present and realize that this is your life.

If you were told that you had six months to live, would you live in the present or the past?

What kind of things would you do? Travel to a dream destination, swim with dolphins, spend more time with family, start taking a class you never allowed yourself to do?

Why are you waiting?

Why not start now?

Put on your shield and cross the monkey bars. If you fall, get up and try again until you’re on the other side. You are NOT your fear! You’ve got this.

Lauri and I connect through writing groups and conferences. For more articles by Lauri check out, https://thinkingthroughourfingers.com/. Type Lauri Schoenfeld in the search bar. She’s written many articles for that website.

Thank you Lauri for sharing your tips on how to embrace fear to move forward.

Related Articles:

https://unitingcaregivers.wordpress.com/2015/08/27/overcoming-fear-of-failure/

https://unitingcaregivers.wordpress.com/2015/07/12/feel-the-fear-and-do-it-anyway/

https://unitingcaregivers.wordpress.com/2015/01/21/five-ways-to-overcome-fear/

https://unitingcaregivers.wordpress.com/2014/07/08/overcoming-fear/

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.

What Doesn’t Kill Us Makes Us Stronger, part 1

A German philosopher, Friedrich Nietzsche, actually said it more eloquently: “That which does not kill us, makes us stronger.” I thought this title was fitting for the couple I’m highlighting this week. 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

Written by Greg Nordfelt

Greg headshotI am a three time Traumatic Brain Injury Survivor (TBI). By looking at my picture, you’ve already noticed I have a huge forehead. Many have told me I could rent space out on it as a billboard. Well it’s also a magnet to immovable objects. That’s why I’ve had three TBI’s. The first was in high school when I was skiing at Alta. I fell on a mogul run and hit the post of a sign that ironically said, “SLOW SKIING”. I hit it head on with the left side on my forehead. The second time I was racing heavy bicycles in England downhill on the wrong side of the road. I didn’t make the turn at the bottom and my front tire hit the guard rail. I hit a lamp post head first, again with the left side of my forehead. The third time I crashed my motorcycle into a bed of Lava Rocks and, again, I hit them, you guessed it, with the left side of my forehead. I am an adrenaline junky, but unfortunately my forehead had a crazy attraction to all of those immovable objects which eventually caught up to me.

Last August was our 5 year anniversary of my accident. We drove to Coeur d’Alene, this time in a car, to meet with Kootenai Health’s executives, two surgeons, and the critical care team that save my life. This was my first time to meet them consciously. I wanted to thank them individually, face to face, and hug them so they would know how grateful I am for what they did for me and my family!

Greg & Laura-Gala

2016 Greg & Laura, Festival of Trees

The press showed up and articles were written. We were on the cover of magazines. They asked us to be their “Spokespeople” for their Festival of Trees. It’s a black tie fund raising Gala.  They asked us and we agreed to help them set a donation record. They were expanding their Emergency Department and Operating Room, the two areas that saved my life. They called us the “talent”. Put us in wardrobe and makeup. They ran out of spray for my face and said I’m “Ruddy” and “Scaly”! I’ve crashed into too many immovable objects and my “talent” and “cover” days are over! We helped them set the record they asked for and raised over half a million dollars!

My primary focus after I got home from the hospital was keeping my marriage with Laura because the TBI divorce rate is huge at 70%. My second focus was keeping my family together. Everything else I had was intently driven into relearning how to speak, read, write and walk again in Neuro Rehab. I worked harder than they asked me to so I could get my job back!

Unfortunately, I lost most of my friends and communities. They became the casualties of brain injury. As a survivor, I ruminate, isolate, avoid loud noise, bright colors, confusion, strangers and crowds. I fatigue easily.

As a result, I was no longer the late night party animal I used to be. I wasn’t as apt to go on long road trips on a whim. I avoided situations where I would get over stimulated and fatigued – the exact opposite of my old self.

I woke up one day after fighting to recover and realized I was a newer version of my old self and I had lost the human connections I once had. The good news is our neuro rehab physicians and therapists not only helped me remap my brain, but gave me tools which helped me nurture my most valuable relationships. Now it was up to me to reach out to friends and family and hold fast to the human connections that were dear to me.
On my second outpatient speech therapy session I learned my biggest lesson after my accident and it had nothing to do with learning how to talk again.  It had everything to do with being taught how to nurture the most important relationship I had – my marriage! I showed up complaining about having my first disagreement with Laura since the accident.  Remember I didn’t have my wits about me yet and could barely speak, so disagreement was a huge stretch!  I sat down across the table from Kim with a huff.

Greg & Laura-landing pad.png

2016, Greg & Laura Coeur d’Alene Hospital Landing Pad

“What’s wrong?” Kim asked. I tried to explain what happened the night before with Laura. After a few minutes she said, “Greg I’ve heard enough. Where’s Laura?”

“In the car,” I said.

“You need to stand back up in your walker, walk to your car and ask her nicely to come and stand next to you.” Then say these words to Laura.  I’m sorry.  I love you.  Thank you for all you are doing every day to take care of me and then HUG her.

This was the most important thing I learned in all of my therapy, by far!  It was an awakening moment for me. I learned that day I was a traumatic brain injury survivor and others were working their butts off to take care of me.  And, I need to thank them – often.

Thank you Greg for sharing and to your therapist, Kim, who told you what caregivers need to hear often. You are an inspiration and definitely stronger by your experience!

Greg had a 35 year career with Zions Bank and was Senior Vice President before the accident. Now he is a motivational speaker and a professional member of the National Speakers Association. The year 2016 was a big year for Greg as he was the Utah Speech and Hearing Association’s (USHA) Ambassador was awarded Survivor of the Year by the Brain Injury Alliance of Utah (BAIU) in October. He is a mentor and volunteer with Neuro Rehab patients and caregivers at IMC and is writing a Memoir expected to be published in 2018.

 To see Greg’s website visit: www.gregnordfelt.com

On Wednesday, Laura’s will share her perspective.

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 8

Written by Christine Scott

Christine

Christine Scott

This post is much easier to write because I can finally include my happily ever after. Weeks ago I was thinking about the story of Cinderella and how, out of all the fairy tales, it’s been told and retold the most. I believe this is because Cinderella’s plight resonates with so many people.

Looking back on my childhood and growing up years, I lived a story similar to Cinderella. My dad passed away while I was very young, leaving my care to a mother who prioritized another sibling’s well-being over mine. I don’t fault her for choosing to put Laura’s needs before mine because my mom’s dedication was necessary for Laura to receive the care she needed. If a mother doesn’t fight for her disabled child, who will?

What distinguishes my story from Cinderella’s is that my mom wasn’t the villain and neither was Laura. In true life, people aren’t easily identifiable as the black and white stereotypes of villains and heroes. They come in every shade between and more often than not, their choices for good or ill, are a result of trying to make the best out of the less-than-stellar circumstances they’ve been given.

For the most part, that’s where the similarities end between mine and Cinderella’s story. I didn’t sing to the animals, have mice as friends, or receive a visit from my fairy god mother. I won’t lie, a visit from a fairy god mother would be very nice. But I did find my prince, and in very unconventional way—Laura helped with that

To catch you up to speed on the timeline of our lives, my grandma recovered from her stroke and was able to independently live in her own home for many years following my grandpa’s death. She never did obtain a driver’s license and with becoming a widow, she became very proficient at public transportation.

When I was thirteen, my mom made a down payment with the royalties she received from my dad’s hang glider plans on a new house. This home was built in West Valley, so we moved about fifteen minutes away from my grandma, but Mom kept in daily contact with her. She continued to be an integral part of our family, taking family vacations with us and helping with my brother. She also shared her love of flowers and history with me whenever given the chance, which fueled my passion for writing and yearnings for her green thumb.

Life went on and I started dating, got my first job at Harmon’s grocery store, graduated from high school, and attended Salt Lake Community College. The doctors eventually controlled Laura’s seizures with many modifications to her medications. She continued to have a lot of behaviors such as picking her face, tantrums, and repetition of certain phrases. She carried around toys and talked to them and she loved Richard Simons workout videos and watching Wizard of Oz.

Dating and having Laura for a sister made for some interesting times because she loved to answer the phone and then repeat her nonsense phrases to whoever was on the other end—usually stuff she’d memorized from shows she’d watched. I learned that letting her answer the phone when guys called who I didn’t want to see again was a great way to get rid of them.

I believe having a mentally disabled sister served as an effective screening process for the guys who came into my life. It took someone understanding and tolerant of disabilities. It required acceptance of differences to be in a relationship with me for an extended amount of time.

Eventually, I met my husband, Nate and he hung around through Laura answering the phone and her tantrums. He even stuck up for me. Laura usually was well behaved in his presence because he expected her to be kind to me.

Laura holding Jessica

Laura holding Jessica

After we were married, Laura treated me different. She never physically picked on me again. Maybe it was because I didn’t live with her and our roles had changed, but I don’t know for sure. When my first daughter, Jessica was born, Laura was fascinated with her, except when she cried. I would have to take Jessica out of the room so it wouldn’t upset her.

Marriage brought a freedom and peace which had been lacking in my life. I was able to progress and explore my talents. From the first time we met, Nate believed in me and my abilities. I will forever be grateful to him for not judging my family situation and loving me through all the strangeness. He was my prince who rescued me and keeps rescuing me every day.

Mom, Laura & Jessica

Mom holding Jessica with Laura

Together, Nate and I have faced many challenges and grown together while caring for our five children. I have absolutely loved being his companion through this craziness I call our life.  He has put up with my marathon running, dreams of becoming a successful author and finishing my occupational therapy assistant degree. I appreciate him for standing by my side through my anxieties and plethora of self-doubts while I’ve struggled to believe in myself and my abilities. And for this, I will love him forever and back again.

 Thanks Christine for being a guest author and sharing your life story of living with Laura. This segment reminds me of the importance of advocacy. While your mother was involved in being an advocate for Laura, you missed having one in your childhood. I’m glad Nate came into your life and was your champion and promoter. As independent as we all want to be, I believe we all need someone to encourage and back us up. You have shown us the difference an advocate can make in our lives. I’m so glad you found your prince.

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.