Broken Beauty: The tough roads of early-onset Alzheimer’s.
Dealing with the failing health of our aging parents is not an easy path. When the problem is Alzheimer’s or another form of dementia, it can sometimes be tougher because they start forgetting who you are and the memories you shared.
That happened to Sarah Smith when her mother started showing signs of Alzheimer’s. It was the early-onset variety. That led to some struggles, but Sarah turned the corner with her faith and by writing a book.
She talks with Kim and Mike Barnes of Parenting Aging Parents about navigating the tough road with her mom and what she learned from writing the book, Broken Beauty.
Read the full transcript
Transcript of Interview: “A Caregiver’s Story: Broken Beauty”
Mike Barnes:
You know, we all have different paths that we take as we’re trying to deal with our aging parents, and sometimes it’s hard to do, but sometimes you can make it very positive. I think that as we are learning ourselves, often we can share what we’re learning with others.
Kim Barnes:
Today, we have Sarah Smith who has her caregiver journey that she’s going to share with us today, and it led to a book as well. So, I think you’re a great example of sharing what you’ve been through.
Sarah Smith:
Thank you, thanks for having me. It’s great to be here.
Kim Barnes:
It’s great to have you on. First of all, talk about what happened and the background. Broken Beauty is the title of the book that you wrote, and we’ll get to that in a second, but how did it all come about with your mom?
Sarah Smith:
Well, my mom was diagnosed with early onset Alzheimer’s around the age of 67. She had had it for a couple of years; we knew there was something wrong neurologically speaking. She had some tingling in her arm, was having problems writing, and we tried to get her to a doctor, but she just did not like doctors. So, it took a couple of years to get some PET scans and do some tests. When they came back with the news of early onset, it was really devastating and heartbreaking because it just never even crossed our minds. As a matter of fact, I had never even heard of it.
By the time they were able to assess her and do all the scans, they said to us she’s had it for several years for sure. Early onset is 65 or younger, and even though she was 67 at diagnosis, it had been probably three or four years in the making, at minimum. So, anyway, it was a really hard time. I was very close to my mom; I was living in Dallas, and she was in Houston. At the time, she had no siblings left, and most of her family had passed away young. It was just a really challenging time for my dad too because he was there by himself taking care of her, and the disease progresses so quickly. Especially the younger you are, it’s very fast. It really felt like from diagnosis, she got so anxious and then tried to cover it up more and more, and it seemed to progress even more. It just gets really difficult on the loved ones, the caregivers, and the family. It’s a lot of stress.
Thankfully, my dad ended up moving to Dallas with my mom to be closer to us kids so that we could help take care of her.
Mike Barnes:
How did y’all deal with that? I imagine that when you got that diagnosis, it sounds like she was okay enough that she understood. So, that’s got to be really difficult when you actually are getting that diagnosis and you know, “Oh gosh, I know,” and the hard part with Alzheimer’s is that it goes one way. So, how did you kind of overcome the hurt and the fear and all of the emotions that were tied into that?
Sarah Smith:
It took a really long time. I think when you first hear news like that, you go through shock. It really is the stages of grief, I would say—shock, then denial, then you’re angry, then you’re sad. I think the same goes for my parents; they went through the same thing. As a matter of fact, they were shocked; they didn’t even tell us for a little while. They felt like they first wanted to talk about it and maybe get their ducks in a row, plan. I think it was just such hard news to accept, and my dad had retired, they had plans to travel, so it was really hard for them to accept that news. They couldn’t really share it with anyone at the time, so it took a while.
For me personally, being in Dallas and not being in Houston, raising a young family—we had an elementary-aged son, and our two daughters were in middle school, and our middle daughter was in elementary school as well—it was hard not being there. Being the only daughter and being so close to both of my parents, I really fell into a spiral myself. I started going through self-pity, feeling bad that my mom was suffering, feeling bad for myself that I couldn’t really fulfill my duties. Then it became, “You’re not doing enough.” Well, it was hard for me to do anything because they were in Houston. Once they moved here, I was able to do a lot more, but I would come home and just sob at night. We did end up having to place her years later because she was a danger to herself, and my dad just could not do it anymore. We ran out of all options.
That really sent me into a place of isolation and led to despair and depression. I went through probably about six or seven weeks of just not being able to get out of bed during the day and covering it myself, lying to Thad, my husband. He’d call and ask how I was doing, and I’d say, “Oh great, I went to the grocery store, I worked out.” But I did none of that. It was really hard.
For me, my faith is really important to me and in our family. What got me out of it was I finally just fell to my knees and sobbed and cried out to God. I didn’t understand why, but I knew that I could trust Him to provide every need, to help my parents carry this burden, but also balance being a wife, being a mother, being a daughter, being an in-law. I had to just surrender trying to fix everything and trying to make every memory last. Once I did that, I got a different perspective and saw things through a different lens. I began to step out of myself and really focus on how I could help love my mom and dad and help them live life to the fullest through this disease, however long it lasts. That began a transformation and renewal of my mind.
Kim Barnes:
What did the journey look like in some ways after that? Once you finally got to this different place, what did it look like?
Sarah Smith:
It just opened up so many opportunities. I started to go help mom; I would take her in carpool, we’d go to Starbucks. Once we placed her and went through my seven weeks of despair and I snapped out of that, I was able to take our children to see her. What it really looked like was so much love was out there that I didn’t even know we could experience. As a mother, you’re also afraid to expose your children to their grandparent that they love so much, to them being around other people, especially in a memory care facility. It seemed crazy to them, and you’re fearful that your loved one is going to say something horrible to your children or do something.
I overcame that and realized if I don’t expose our children and look at this as a service opportunity, and they think life is easy, then I’m doing a disservice to them. Life is hard and challenging. I wanted them to see that we can cope with our pain and our challenges and our trials with faith and be patient through it. We need to give our time to help others feel joy and love, and also just to show that their life is valued. That was really important to me. Let’s show our children that dignity matters, their lives matter no matter what the disease or disability is. That wasn’t just for my mom in memory care; it was for everyone around her.
It led to us taking their friends and going at holidays to sing, painting crosses with them for Easter, passing out treats. We seized every opportunity we could to volunteer at memory care. To see our children come alive and start thriving because they were giving themselves, it opened up a whole other side of blessings and opportunities that I had no idea would come for us.
Mike Barnes:
That’s just great. I think that what you had to go through sounds so easy because it’s just changing your mindset from having a pity party to taking a positive approach, but it’s hard to do, especially when it’s a loved one, especially your mom that you’re so close to, that’s going through this. Any tips for people who are going through something similar about how to get over that bridge to have that positive attitude?
Sarah Smith:
Honestly, it’s a choice. I had to choose joy to get out of isolation and also realize that if I don’t choose joy and I don’t put myself in their shoes—if I was sick, I would want to feel loved, not lonely. It was really changing my perspective of how will this make my mom feel today. She may forget about it, and she did; there were times we would spend hours with her and 30 minutes later she didn’t remember, but I knew it was bringing her love and joy in that moment.
Truly renewing your mind every morning, however that is for you. For me, it was memorizing Romans 12:2, a Bible verse about not being conformed to the pattern of this world. I was being conformed to fear, which had a huge grip on me. By the renewing of your mind, you can discern God’s perfect will, and it transforms your heart. That’s what happened to me. I started setting my alarm every hour and reciting that Bible verse, and over time it became a discipline. The next thing I knew, my mind was being renewed, and my heart was being transformed. I looked forward to going and serving.
Were there days that I dreaded going? Yes, there were. I had a lot on my plate, but every single time I left, I left with a smile on my face, realizing there was so much purpose through this pain. It was restoring my broken heart. By serving and loving on her, my heart was also being restored. I think it’s so important to find community, to not be afraid to share with your friends your feelings and be authentic, to not be afraid to feel vulnerable. When you do this more and more, people actually come out of isolation. I thought I was alone, but then I showed up to do the Walk to End Alzheimer’s and was surrounded by thousands of people. Then you go to a memory care and serve, and you see all these other families struggling and going through the same thing.
The more we showed up and sang and danced, other family members began to show up more. It became a ripple effect. Just having that positive mindset encourages and builds others up. If you can choose joy and step out of yourself and have the courage to walk by faith, I promise you it is so worth it. It really is.
Kim Barnes:
I love that you said it was a daily, maybe even hourly, choice you had to make and be really conscious about that decision.
Sarah Smith:
Very much so. You become an overcomer if you do this daily. Whatever that is for you—yoga, meditation, scripture, spending time with God, music, going on a walk and listening to a podcast—renewing your mind daily and setting that before you step into the role of caregiver and loved one to help is critical.
Kim Barnes:
And you wrote a book about it. I assume that not only did that help you, but it’s helping people who read it.
Sarah Smith:
Yes, I’ve been blown away by the responses. Messages and emails have said, “You have said everything I have felt.” The stories have gone on and on. I’m so grateful that this journey has led to me sharing the story and all it has done for my mom, dad, and our family. It’s helping others, and I’m so grateful for this opportunity to share our story.
Kim Barnes:
The more we talk about things, that was the whole impetus behind Parenting Aging Parents. If we do talk about it, we can help each other. You’re a great example of opening up and sharing your experiences to help somebody else.
Sarah Smith:
Thank you. I’m so glad you’re doing this. The more we talk, the more it helps people and builds our community online, on Facebook, in your city, in your friend group. It helps build community. You’re doing a wonderful thing with this.
Mike Barnes:
Thank you. Real quick, about Broken Beauty—the book is called that because that’s your mother’s nickname, correct?
Sarah Smith:
Yes, it is. When my mom became a grandmother, she decided she wanted her name to be Beauty. She said if she’s called Grandma, she’d feel old and feeble. So, she did everything to teach the kids Beauty. At first, our oldest would say “Booty, booty,” but my mom stuck with it, and that’s her grandmother name. That’s why the book is called Broken Beauty. Ron Hall, a dear friend of mine who wrote “Same Kind of Different as Me” and had a movie based on his book, helped come up with that title because we’ve seen so much beauty in our brokenness. That’s my mom’s name, and she’s so beautiful. My dad has said he’s fallen in love all over again with a new woman. There can be beauty in our pain. That’s where her name came from and where the title came from.
Kim Barnes:
That’s great.
Mike Barnes:
Sarah Smith, great inspiration. Thanks so much for talking to us today.
Kim Barnes:
I think we learn a lot from things like this. Like I always say, don’t worry so much about what’s missing; love what’s still there. Sarah’s a great example of that. So much of this is true no matter what the diagnosis or condition is, but just having that continual reminder that I can choose joy or choose something else that’s not going to feel so good. It’s not easy, but it’s a continual practice for sure.
Mike Barnes:
If you have any other topics you’d like us to discuss, let us know—Parenting Aging Parents.
*This transcript is auto-generated. Please excuse any typos or mistakes.
