In celebration of my book, Prayers of Hope for Caregivers, I’m introducing you to real-life caregivers who have served selflessly and faithfully. My prayer is that their stories and tips will encourage you in your own caregiving journey. No matter how hard or lonely the path, remember you’re not alone!
Today, meet my friend Twila…
Welcome, Twila! Who is your care recipient?
What are his physical challenges?
My husband has a rare muscle disease called inclusion body myositis (IBM). It’s an autoimmune disease that causes a progressive deterioration of muscles and presents in a similar way to Lou Gehrig’s. There’s no treatment or cure for it at this time. On top of the IBM, he has Parkinson’s. He’s no longer able to walk and spends his days sitting in his power wheelchair, sitting in his lift chair, or in bed. Not only has the IBM affected his grip, arm, and leg muscle strength, it’s also weakened his diaphragm considerably, which causes a lot of other problems. I’m his 24/7 caregiver, and he relies on me for just about everything. (He’s also bipolar, which is well controlled with meds.)
What has been the biggest challenge in your caregiving journey?
To be honest, I’ve had a lot of challenges. Caregiving isn’t easy, and I grieve over everything I’ve had to give up. I can no longer travel to speak or teach and keynote at conferences, which I really enjoy. (It also provided a source of income for us.)
I have trouble balancing the many responsibilities. It didn’t take long for me to realize there’s not enough of me to go around. I can’t do it all, so a lot of things just don’t get done. My health has suffered as well. And yes, for the record I’m very familiar with the clichéd saying that you have to take care of yourself (I’ve said it many times myself), but it’s a lot easier said than done.
Caregiving can be wearing and lonely and frustrating. I’m unable to go out and enjoy the things other people enjoy because my time is not my own. As a couple, we’re limited in what we can do and where we can go because many places aren’t handicap accessible, including our friends’ homes.
Probably the biggest challenge and stressor for me, though, is the financial one. Because most of my time and energy is focused on my husband and other responsibilities that keep our little world spinning, I don’t have the time or energy I need to work on generating a steady income. I don’t know what I’d do without God’s help and the sweet surprises He sends our way.
What moments of joy have you experienced?
As I mentioned above, God sends sweet surprises our way. I love the way He knows just what we need and when we need it, and I have many stories to share of His goodness, faithfulness, and provision. I call myself a writer and speaker who loves braggin’ on God. He makes sure I have plenty to brag about, and that gives me great joy.
For example: Church members and friends took up a collection to provide us with a used handicap accessible van. That was a HUGE deal and something that was on my “God pile.” We’ve received countless monetary gifts. They’ve come to us through the mail, been delivered to us at our front door, stuck in our hands at church, wired to our bank account, and in other ways. They always seem to come at just the right time. We’ve had help with snow removal and yard work. We’ve had fees waived for legal work. We’ve received the gift of a new toilet when ours was leaking. We’ve been given gift cards. I could go on and on and on. Bottom line: God knows and God cares.
What Bible verse has been most encouraging to you?
I cling to the promise found in Proverbs 3:5,6 (what I call my life verses). “Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.”
I’ve learned that there are lots of things in life I don’t (or won’t) understand, and I’m not supposed to understand them. My job is to trust God with ALL my heart and to acknowledge Him in ALL my ways. When I do that, He takes care of me. I’m not left to flounder on my own. (Trusting God isn’t always easy, but it is always rewarded.)
I also love the comfort that comes from practicing the truth of Psalm 46:10. “Be still and know that I am God.” Here’s another way I like to look at it: “Know I AM and be still.” If I know I AM and trust Him, I will be at peace.
What practical steps or tips have helped you through caregiving?
If the resources are available and you can do it, take advantage of home delivery of groceries and other products.
Take good notes when speaking to medical personnel, insurance reps, social workers, bill collectors, and others related to your situation. Record dates, details, the names of people you talked to, and other pertinent information. Keep notes and medical info organized and in an easily accessible location.
Ask questions and keep asking questions until you get the answers you need.
What spiritual practices have been helpful for you?
An important truth I teach often (and have to remember for myself) is this: “Whatever we focus on becomes magnified.” If I keep my attention on my circumstances, they become overwhelming to me and tend to control my life. But if I fix my thoughts on God, He becomes magnified in my heart and mind, and I’m reminded of who He is and what He’s able to do. My attitude changes, and my unsettled spirit quiets down. It takes resolve, but it’s so worthwhile.
Chatting with God throughout the day, sitting in His lap, listening for His voice, praising Him, focusing on truth, and trying to maintain a grateful heart are all helpful practices.
What would you say to another caregiver in your shoes right now?
It’s okay to cry.
It’s okay to be honest about your feelings.
It’s okay to ask for help.
It’s okay if you don’t meet the super-hero requirements.
It’s okay to acknowledge that you can’t do it all.
Breathe in. Breathe out.
Lean into God with everything you’ve got. Look to Him for your help. Remember the truth of who He is, how big He is, and how much He loves you. Life isn’t always easy, but God is always present and always cares. He knows your struggles. He also knows what you need.
Twila, Thank you for your authentic words that portray the struggle but also point to hope in Jesus. Continued prayers for strength, peace, and trust as you care for your husband.
Also known as the Gotta Tell Somebody Gal, Twila Belk loves braggin’ on God. Whether she’s writing, speaking, or teaching, she offers hope and encouragement for people to fix their eyes on Him. Twila is the author of The Power to Be: Be Still, Be Grateful, Be Strong, Be Courageous (a 40-day devotional) and Raindrops from Heaven: Gentle Reminders of God’s Power, Presence, and Purpose (a one-year devotional) as well as five other books. She’s currently at work on her eighth title, a collaborative project. Mom to three grown children and Grandma to three precious little boys, Twila lives with her husband in Bettendorf, Iowa, not far from the Mississippi River and the home of American Pickers, John Deere tractors, and Whitey’s ice cream. For more information, visit www.gottatellsomebody.com.
The Power to Be
Be still. Be grateful. Be strong. Be courageous.
Sure, that’s easy for you to say, but you don’t know what I’m dealing with. Is that what you’re thinking? The good news is that it is possible to be still, grateful, strong, and courageous–even when undergoing trials, facing unknowns, battling fears, or struggling with feelings of inadequacy or insecurity. It all has to do with where your focus is.
In this beautifully hopeful devotional, Twila shares important truths and helps you shift your attention from situations and self to a big God. Learn as she shares how:
- Whatever we focus on becomes magnified.
- Our circumstances don’t change who God is; they show us who God is.
- The better we know God, the more we can trust Him.
This forty-day devotional contains encouraging readings, Scripture verses, prayers, and daily affirmations, which will lead you to realize that you indeed have the power to be.