Broken Beauty

by Sarah B. Smith

  And lastly, thank you to my “prayer warriors”—my dear friends and the “Yayas” who prayed for me often—especially the times I sent a text beginning with, “I’m so sorry to ask this of you, but can you please pray for . . . ” You made me feel my prayer requests weren’t a burden, but rather an honor and a privilege. I found out who my true friends were as I battled heartbreak and was filled with grief. Instead of chasing after things of this world, like popularity or fame, you put God first, others second, and yourselves third. Your friendships are real and authentic. You don’t hide from shame and aren’t afraid of being vulnerable. Thank you for showing me what true friendship looks like and being there in every way possible. I needed you, God knew I needed you, and I am forever grateful for His timing and that He brought each of you into my life.

  Reading Group Guide

  How much of Broken Beauty’s power came from the fact that it was a memoir? Would the story have been more—or less—impactful if it were written as fiction?

  What lessons did you take away from the story of Sarah’s life? Discuss why is it important to you and your particular life situation.

  How did the book affect you? Do you feel changed in any way? Describe what the change means to you.

  Some memoir authors feel they have to portray themselves in a positive way, but Sarah shares all of her experiences—both good and bad. Do you think this helped the story? Did it change how you viewed her? Were you able to connect with her better because she was honest?

  Broken Beauty begins with Sarah discovering her mom trying to eat broken glass. This was one of Sarah’s most troubling experiences during her journey of caring for her mother. How does this one scenario frame the rest of her journey? Was it a powerful way to start her memoir?

  What was the catalyst that caused Sarah and her father to finally find a place for Rebecca? Was there one experience in particular that you felt was the turning point?

  Sarah’s faith guided her through her journey with her mother. Discuss the role religion and faith played in this memoir.

  When Rebecca learned of her disease, she didn’t tell Sarah. Why do you think she didn’t? Do you think she was trying to shield Sarah from what the future might bring? Or was it because Rebecca didn’t want to face the truth? Do you think it would have been better for everyone if she had told Sarah sooner? How would you handle this situation?

  Sarah had a great support group while going through everything. Discuss how some of the people in Sarah’s life helped her and what would have happened if she had not had their support.

  In what moments did Sarah experience God’s presence most strongly? How did it help her in those moments?

  What were some of the more powerful moments in this book, both good and bad? Why were they so powerful or emotional?

  The title, Broken Beauty, refers to Rebecca’s broken mind, but also to the fact that there can be beauty in something that is broken. Discuss some examples where this is reflected elsewhere in the book or in your own life.

  AUTHOR Q&A

  Q:You are very honest about your struggles—from learning about your mother’s illness to caring for her. What was it like for you to revisit these painful memories and experiences as you wrote the book?

  Writing this book was almost more painful than the experiences we went through! The reason I say that is when you are walking through a journey, you don’t realize the burden and stress and heaviness you carry. You do what you need to do, and I think your mind goes into protective mode and you are almost blind to what is really happening in front of you. As I wrote the book, there were times I had to take several days or weeks off because it was so gut-wrenching to not only relive the journey, but to realize how bad it really was. I internalized so much that tears poured out of me as I wrote the story. I honestly had no idea it would be that intense and difficult, but I am thankful it affected me that way, because it was also therapeutic.

  Q:What inspired or compelled you to share your journey with others?

  I was compelled to share my journey with others because at the time, there was not enough information on early-onset Alzheimer’s. I was in my thirties, and I didn’t have one friend who could relate to my situation. They may have had a grandparent with dementia or Alzheimer’s, but it is different when it is your young, fit, and healthy parent and best friend. It’s a terrible disease no matter the age! I was grateful to have found Kimberly Paisley’s book about her mother, and I loved reading Still Alice, but other than those two “stories,” it was hard to find material on EOAD. As far as inspiration, I can only say it was from God. I was a happy stay-at-home mom of three, wife of an amazing husband, and driver of kids to and from sports, school, and activities. I never in a million years thought I would or could write a book! God continued to press it on my heart, and after many “signs” that I simply could not deny, I couldn’t turn my back on Him and went for it! God was my true inspiration.

  Q:A lot of memoir writers believe that they need to portray themselves in a positive way, yet your memoir is very honest about the struggles you faced. Was it hard for you to write about your flaws so publicly?

  The most difficult part wasn’t being honest about my struggles. The hardest part was feeling vulnerable throughout the process. It’s easy to worry what others may think, and for a while, I was concerned about even my own family members passing judgment about things that I shared publicly, but at the end of the day, feeling vulnerable is exactly what I, personally, needed to learn. I didn’t want to hear, “It’s so hard, I’m really sorry.” I wanted to hear what may happen, things she may do, some sort of time line, and so on. It is so important and healthy to be completely honest and vulnerable. Why pretend it’s “okay” when it’s actually not? Why not say my mom started wearing Depends and share how devastating that day was? It’s the reality of the disease, and if it helps even ONE person, Mom would want that. Unzipping your heart and being completely open draws more people in, and I believe it allows a person to be more open and honest with themself and their own situation. There should be no shame. It’s life, and life is hard.

  Q:Did you discover anything new in the process of writing the book? As you revisited past memories, did anything surprise you? Were there any connections you hadn’t made before, or did you see any elements of your life in a new light?

  My biggest discovery throughout this entire writing process was how much my mom truly loved and loves me. In my early years, teenage years, and even in my young adult years, Mom could be tough. I thought she was hard on me because I wasn’t good enough, or she had to have control! But, what I learned was that her love was SO grandiose for me, it was SO big, that anything less was not enough for Sarah! She wanted the very, very best for me. Mom lost a daughter at birth. Jessica is her name. She is a few years older than me, and she died during labor. Dad always said the reason Mom carried me on her hip all of my toddler years was because she didn’t want to lose another daughter, and I was double the blessing. So, whether it be the best coach in gymnastics (hence many hours of traveling in the car to be under the training of Olympic coach Bela Karolyi), tennis, a boy I dated, or a particular job I wanted . . . whatever it was, she just wanted the best for me because she LOVED me. I saw her love in a whole new light when writing this book. And, as hard as this is to say, I am thankful, in a way, for this disease, because I know in the deepest part of my heart and soul how much Mom loves me, and I will keep that forever and ever—even when the good Lord takes her home. I’ll never go back to thinking she was controlling or I wasn’t enough. I was enough, and she knew it, so she did everything she could, because of her love for me, to make me the best person I could ever be.

  Q:What was the most rewarding experience you had through this journey? What has been the most important or beneficial lesson you have learned from writing your story?

  Well, this is going to sound so strange, but my most rewarding experience was in Colorado finishing my book in our family teepee designed by my motherin-law.
For me, this teepee is my “tent of meeting.” Moses pitched a tent and called it the “tent of meeting,” and it says in Exodus 33:7 (NIV) says that “anyone inquiring of the Lord would go to the tent of meeting outside the camp.” It’s hard to put into words my experience in this “tent of meeting,” but I truly felt the manifestation of the Holy Spirit when I hit the “period” on my last sentence of the last chapter. The entire teepee began to shake and the fabric around the teepee whirled like a huge gust of wind had come through. I was in such shock that all I could do was look up and around and watch. I had chills all over my body! But what I haven’t mentioned is that right before I typed that last sentence, I had prayed to God that He would please let me know if there was anything else He wanted to say in the book. I was afraid to “finish” it before making sure God was finished, too! After I prayed, typed the last sentence, and hit the period on the keyboard, the entire teepee started going crazy. It felt like an eternity, although it was probably only thirty seconds! It was a perfectly calm day that day, and I had been in that teepee writing for three hours. Then, after the shaking stopped, it continued to be a perfectly calm day! I even sat in the teepee for another forty-five minutes to see if the wind would blow again! I know this all sounds bizarre for some, but even as I type and share this personal story with the world, I have tears because I know what I felt, I know what I saw, and I can only attempt to explain the unexplainable! I choose to believe it was the manifestation of the Holy Spirit, and therefore, it was my most rewarding experience throughout this entire process! The most beneficial lesson I have learned is to write from my own heart and not what others want me to write. If it’s going to be truth from my own experience, then let it be truth. You can’t please everyone, and you never will, so I did what I felt pleased God and honored my mother and father.

  Q:What advice would you give readers who are also affected by early-onset Alzheimer’s?

  Live in the moment, agree with them (most of the time!), and listen to your doctor. Dad fought meds for Mom for a long time. Neither of them believed in medication. She refused it, and he complied because he didn’t really like it anyway. But, one of the biggest mistakes he made was not convincing her to take meds sooner. It’s a game changer, and it’s necessary. It’s also important to re-evaluate the meds frequently as the disease progresses. Living in the moment is crucial. It’s hard to get used to it because the loved one knows what is happening, but at some point doesn’t know or understand what they are losing. But the caretakers always know and try to live in their world and LOVE on them as much as possible. And lastly, do your best to not hide the diagnosis from others. Though some will treat your family member differently over time, you will need support. It’s crucial. Hiding is very lonely. You need a supportive community to live with this disease.

  Q:What do you consider to be the most important thing people should know about caregivers for early-onset Alzheimer’s?

  Caregivers for early-onset Alzheimer’s have one of the most difficult jobs in the world. I always thought being a Mom was the hardest job, but I am not sure I can say that anymore. Perhaps they are equal. It’s mentally and physically exhausting, depleting, and debilitating. You begin to feel empty. Caregivers need adequate time away from the situation or they can eventually make the situation worse. Early-onset caregivers will have moments of retreat or withdrawal and need to step away from the loved one. Caregiving is also a mindset. Do you go down the road of bitterness, anger, frustration, resentment, despair and self-pity, or do you savor the moment, live in the moment, show love even if you may not feel love in return, sacrifice your time and serve others, and choose happiness regardless of what the disease says through the person who is sick? The disease is exhausting, but the person you love is still inside. When the disease takes over and speaks ugly words, and its actions are volatile, it is important to remind yourself it’s the disease and not the person you love and who loves you. Happiness is a choice. It takes a ton of discipline to renew the mind. If you get in the habit of renewing your mind daily, you will find you can rise above the pain. Early-onset caregivers can’t do this alone. They need support, too!

  Q:What do you hope readers will take away from this book?

  It’s my hope that for one, readers will feel the power of love. Love trumps all suffering. Secondly, there is hope in God. No matter the disease, struggle, or difficult circumstance, you are loved and can get through anything with God. Thirdly, for anyone going through early-onset Alzheimer’s, I hope they feel that this book gave them an authentic glimpse into the power of the disease and what is to come, and that no matter what they may tell themselves, they are not alone and there is no shame or guilt for any of the feelings they feel. It’s normal, and it’s okay. And lastly, show up for your loved one if they need to be placed. The more love that shows up each day for them, the better their quality of life. It feels good to be loved whether healthy or sick, and the more they feel love, the better they feel. My dad, at one point thought by placing Mom, he was breaking their vows. I want readers to see true love, “through sickness and in health,” doesn’t mean it’s only at home. Placing Mom was a very hard pill for dad to swallow. He felt like a failure. He would tell you now he is loving her better than ever because he has the rest he needs, she has the help she needs that he couldn’t provide, and he is there every single day. He loved her fully without the disease, and he loves her fully with the disease. Alzheimer’s can’t stop the love.

  Q:What was the most difficult part of the writing process? Was there an “easy” part? Was any part of the experience enjoyable?

  For sure, the most difficult parts were the two chapters on placing Mom (Abandonment Day, Parts 1 and 2). It actually took me a few weeks to get through those, if not longer. I had to set aside time on days when I knew my kids were carpooling straight from school to sports and I had a babysitter for our youngest. It was beyond emotional, and I had no idea it would be that way. God took me back like I was walking in those shoes all over again, and I don’t ever want to go back to that day again! It was terrible, terrible, terrible. I still see things so clearly in my mind: Dad’s face the morning we left, Mom picking up the pecans, the color of her nail polish, her lovely turquoise outfit, the powder in her wine glass, and her leaning over a woman in a wheelchair when I turned my back on her and left. Worst experience ever, and the most difficult chapters to write. The “easiest” chapter was the caregiver appreciation lunch! Caregivers need to be appreciated every single day of the year! Professional caregivers are underappreciated. They have my heart. They are amazing. It was an easy chapter to write because I meant every word of my speech at that luncheon, and I would say those words all over again. The most “fun” chapter to write was the cycling class! Big Ginny walking in not knowing she wasn’t supposed to just barge into the class like that. She just took over and danced in front of the instructor and did what she does best: make everyone smile, laugh and cry! I love that woman!

  Q:Did you have a favorite chapter to write in Broken Beauty?

  I think chapter 24, “Making Broken Things Beautiful.” The Walk to End Alzheimer’s was a very difficult day for me, yet it turned into so much fun. I was anxious in the days leading up to it, and when my friends showed up and surprised me at the hotel the day before, it was love showing up for ME. I felt so loved, and it was encouraging, uplifting, and invigorating. It nurtured and strengthened me during a time in which I felt delicate, frail, and weak. I don’t think Big Ginny and those girls will ever truly know how special that weekend was for me. And to top it off, I saw many of Mom’s caregivers at the finish line, which was liberating! I was heartbroken, but the entire day turned into one of the most beautiful moments of my life.

  Q:One thing that stands out in your book is that while there are many challenges and struggles with being a caretaker for someone with Alzheimer’s, there are also some beautiful moments. Can you share one of your favorite moments spent with your mother?

  One of the most beautiful mo
ments spent with my mother was the first time the fifth-grade girls came to visit Mom and the other residents, singing hymns and reciting scripture and the Lord’s Prayer with sign language. I remember so vividly putting my arm around Mom and watching the girls say, “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?” (Matthew 6:25–27, NIV). I did everything I could to not fall down on my knees in front of the kids and Mom. The girls were not only speaking to Mom and the residents, but they were speaking to me! I turned and looked at Mom, and she just smiled and leaned her head into mine and squeezed my other hand. I believe she knew in that moment that everything would be okay, and that we were there for her and would never abandon her.

  Q:Your relationship with your mother had to change very suddenly, and it was a change that she never realized or remembered. It was also something you had to adjust to alone, without her input. How did you handle this? What was the hardest thing about this change?

  Truthfully, I was in complete despair. It’s a miracle I got through it all without an antidepressant. I fell into a state of depression, and I did my best to hide it and continue to be strong, but I wasn’t. The kids went to school, and I lied to my husband about working out and running errands. I was at home in bed, crying for hours and hours. I went from talking to my mom on the phone nearly every day, when she lived in Houston, to her finally moving here and me getting to see her every day. Then overnight, I couldn’t speak to her or see her for over six weeks. It was like she died. My dad looked like he had lost the love of his life, and I felt like I had lost my mother. It’s hard to explain. The only thing I could do was cry and lean on God. I prayed every single day for hours. If it wasn’t for God, I don’t know how I would have made it through everything. I look back and wonder how in the world I got in the car and drove carpool—after crying for hours—pretending I was okay! It’s amazing, the power of the mind; how we can be so determined and pretend we are okay when we really aren’t. I was very alone, and I should have been more open about what was really happening so I could receive the help and support many people offered to give. But I refused it, and pretended I was okay.