Tips for Caregivers About Leading and Following

In this ongoing series exploring caregiver “sweet spots,” we’re looking at the challenges and opportunities experienced when caring for a loved one with disabilities or other special needs. Today’s focus is on appreciating the roles of leaders and followers. A strong team embraces the strengths of both.

The famous Fixer Upper couple, Chip and Joanna Gaines, are both strong leaders. Yet Chip readily admits that he and his wife are vastly different in almost every way. In fact, he is heard in many interviews explaining that the early days of working together were not always easy for them until they learned how to “stay in their own lanes.”

In his book Capital Gains: Smart Things I Learned Doing Stupid Stuff, he says “It’s just human nature for couples to turn their insecurities and animosities against each other during life’s more challenging seasons.” He credits the successes in their marriage and business to their faith in Jesus and learning to appreciate and give freedom to each of them to embrace their individual strengths.

When family members are caring for a loved one with disabilities or other special needs, the household runs, in many ways, like a small business. There are daily needs for logistics management, ordering supplies, doing paperwork, tag-teaming or scheduling help in shifts and maintaining morale.

Any strong business needs both leaders and followers. That includes inspiring visionaries, tough-minded decision-makers and loyal partners who will dependably implement responsibilities and enforce policies. In my own family, we are gifted with a delightful combination of gifted servant leaders. But we’ll be the first to admit that we can step on each other’s toes from time to time.

Now that my husband, Larry, and I share our “empty nest” with Carly, we have developed a sort of rhythm about how we tag-team her cares. So when one of Carly’s adult sisters visits or we all go on a vacation together, we’re grateful for help but there can be confusion about who is in charge as everyone is eager to relieve each other of responsibilities. Having so many “cooks in the kitchen” can interrupt the usual rhythm. Those situations benefit from open conversation and intentional planning about how to navigate the evolving situation.

Our daughter has reminded us on several occasions that we need to allow others more freedom to find their own approaches to certain aspects of Carly’s care. Although Larry and I, as the parents and primary caregivers, often find the most efficient methods, efficiency is not always the most important thing. So when new people come to the team or one of Carly’s sisters comes home to visit and steps in to help, we are learning to step away and trust them to navigate certain aspects of their own ways and rhythms together. As you might imagine, we have often ended up discovering some wonderful new ideas from observing their process rather than trying to micro-manage them.

A leader will need to lead. A servant-hearted contributor may appreciate clear expectations but desire great independence to implement the plan with a sense of freedom from authority.

My family has learned we have some vulnerabilities during times of change or transition. For example, Larry and I sometimes experience conflict when he returns from business travel. His job takes him out of town one week every month so I fly solo with Carly. I may try something new, especially if I’m trying to cope without extra help nearby. During those times, I hone in on an independent mode that is hard to shake when he gets back home. Unfortunately, I have not always communicated those ideas with sensitivity. Larry can feel, and rightly so, criticized or judged when I announce that I’ve found a “new and better way.” Re-establishing our usual collaborative approach takes some careful attention.

Travel away from home for holidays is another time when Carly’s routine is ripe for change. The changes may be driven by a need to manage without support staff or cope without the usual home modifications and conveniences. But sometimes those stretched periods lead to an improved approach and the adjustments become more permanent. The benefits of those adjustments are maximized when we communicate about them well with each other as a team.

It takes people with varied talents, passions and perspectives to make a strong team. Each contributor will have their own strengths and weaknesses.

Charismatic leaders have capacity for great accomplishments and to be powerful inspiration to others. But the measure of their “greatness” will rely on things like their moral code, humility, kindness and ability to control their temper.

Valuable to any caregiving team is a leader who is confident, tough-minded and visionary. They will be admired for their ability to take on responsibilities and rally a team around a project. Their challenge can be remembering that people themselves are not projects. In their weakness, leaders can be overly selective about which needs they prefer to prioritize and who they choose to align with on the team. They can become easily frustrated, even hot-tempered or cruel, when unable to motivate others to follow them.

Those who are happy to follow the lead of others may be servant hearted and eager to please. You can expect them to be extremely loyal and dependable. They will also be your strongest policy enforcers. Even if they are quite independent, they would be very willing to take on responsibilities as long as decision-making can be shared.

Without a sense of collaboration, those who are servant-hearted can become anxious or insecure. Their challenges can include becoming fearful when left alone and resentful when they don’t feel appreciated. In an atmosphere of freedom, supportiveness and affirmation, the caregiver whose nature is to serve will always go the extra mile for your family and play a key role on your loved one’s “dream team.”

RELATED: Tips for the Caregiver Who Is Very Independent

It helps all members of the caregiving team to clearly identify the big picture goals and keep them prominent in their mindset. For example, the leader who focuses on training their child with special needs towards independence may parent harshly unless their ultimate goal is to maintain a spirit of loving connectedness to their child. Similarly, a caregiver whose goal is to make everyone around them happy through their service will eventually grow resentful unless their ultimate goal is to serve God and experience their validation from knowing they are, above all else, God’s beloved child.   

Clear and open communication among care team contributors is always important in forging a strong and healthy caregiving team. This is particularly true when family members are leading passionately or serving with fierce loyalty. Each must learn to cooperate with the other’s strengths having humility and compassion in weakness.

The combination of emotionally and spiritually healthy leaders and followers on a caregiving team is a powerful gift! The family will thrive by appreciating each other’s strengths and gracefully holding each other accountable to sharing collaborative and godly goals.

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If you are energized by leading and inspiring others

  • Be involved with setting goals, planning, making decisions, delegating responsibilities, supervising and motivating the caregiver support team
  • Offer to be the point-person in situations that require persuasion (e.g., insurance companies, funding sources) and optimism
  • Learn to be a servant-leader who is attentive to needs and respects others’ rights, feelings, thoughts, plans
  • Learn to motivate others without manipulating or dominating them (never use threats, anger, force or violence)
  • Delegate obligations where others could be encouraged and helpful (e.g., research)
  • Invest time and energy in activities your loved one enjoys (e.g., adaptive bike, swimming, wresting/roughhousing, cooking, hiking, fishing)
  • Learn to give much-needed recognition for the contributions and accomplishments of others
  • Learn to look to God in your own needs for recognition and approval

If you are naturally inspired to serve fiercely

  • Seek a role on the caregiving team that surrounds you with healthy, wise and kind people to guide and help you
  • Use your servant-heartedness and intuitiveness to meet needs around you
  • Be direct about your own needs, preferences and boundaries
  • Find people who will collaborate with you in decision-making and respect your values
  • Maintain your individuality and a clear sense of your purpose on the team
  • Learn to seek Jesus for comfort and support when others are reliant on you

The Bible offers an abundance of help and encouragement for leading and serving caregivers:

Psalm 139:
Search me, O God, and know my heart; test me and know my anxious thoughts. Point out anything in me that offends you, and lead me along the path of everlasting life.

Ephesians 4:26-27
Be angry, and yet do not sin; do not let the sun go down on your anger, and do not give the devil an opportunity.

Matthew 5:5
God blesses those who are humble, for they will inherit the whole earth.

Luke 9:23-25
Then Jesus said to the crowd, “If any of you wants to be my follower, you must give up your own way, take up your cross daily, and follow me. If you try to hang on to your life, you will lose it. But if you give up your life for my sake, you will save it. And what do you benefit if you gain the whole world but are yourself lost or destroyed?”

Romans 12:10
Love each other with genuine affection, and take delight in honoring each other.

2 Corinthians 9:7
You must each decide in your heart how much to give. And don’t give reluctantly or in response to pressure. “For God loves a person who gives cheerfully.”

Lord Jesus, you are so wise and creative in the ways that you have put my family together. Our circumstances are so complex and challenging yet You are intimately aware of it all. You know just what we need. Your timing and ways are trustworthy. I see that You are teaching us how to live more cooperatively and generously in love and compassion for each other. I confess that I have, at times, felt things like pride and resentment about my role in our caregiving family. Help me to recognize and affirm the value of others in my family. Help me to see what I’m good at and what inspires me too. Show me how those things are valuable to my loved one with special needs but also to my whole family. Teach me how to engage my gifts in ways that pour Your love into my family. As I lead others, humble me to love and serve You as my supreme Leader and Lord (you are not my personal assistant). As I follow the lead of others, humble me to serve with healthy boundaries and with genuine cheerfulness too. Amen

Tell us in the comments what works for you and your family!


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families. Lisa is the primary contributor on the blog sharing practical and spiritual encouragement for parents and other family members caring for children with health and developmental challenges. She also serves on the Key Ministry writing team where she contributes monthly articles for special needs parents and church leaders. Her personal blog also provides encouragement for people who find themselves in challenging places.

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