Defining Roles Can Encourage and Empower Parent Caregivers

Helping a group of people find agreeable plans is right in my husband’s wheelhouse.

Many years ago, Larry was attending one of Carly’s IEP planning meetings at her school. It was the first time he had participated directly in the special education annual planning process, and I was very eager for him to see how those conversations unfolded. You see, those “team” meetings were tense and stressful for me. I never really felt like an equal voice on that team, despite being Carly’s parent. And though I had passionate perspectives about what goals and objectives were documented on Carly’s IEP, I usually left those meetings feeling dismissed and defensive, wondering if I was crazy.

Am I being unreasonable?
Will they ever see Carly’s potential as we do or
am I just a biased mom who is just seeing what I want to see?
Are my expectations fair?

I felt very alone in that room every spring and the situation seemed worse every year. So, I asked Larry to take time off work and come with me. He was willing to come but was unconvinced that he could add any value. I can no longer recall specifics. But I remember him saying something like, “I don’t know half of what you know about all of this stuff. And I fully support you in whatever you think is best. I can’t imagine there’s anything I would have to add.”

What happened that day was unexpected and transformative in how we valued each other and approached our caregiver-parent roles from that point onward. You see, Larry sat quietly listening during that meeting. He didn’t say much at all. But at a couple of points when there seemed to be misunderstanding or impasse, he spoke briefly and gently, with pointed clarity. He affirmed my perspective, restated the goals as he understood them (brought the conversation out of the weeds), and reassured everyone that Carly deserved our collective accountability.

The room fell silent for a moment and the tone shifted. Suddenly, I felt like they were taking us more seriously. The veiled pushback also slowed, and we heard fewer excuses like, “parents often observe levels of function at home that their children simply don’t display at school.”

I could have resented Larry’s influence in that day (frustrated that I couldn’t accomplish that on my own), but I actually fell in love with him all over again, appreciating his gift for mediating conversations and rallying people around common vision.

Conversation in the car on the way home revealed how frustrated Larry had been recognizing all the politics and agendas I had been dealing with for years. I felt very validated. He had also noticed how his presence alone combined with a few choice words made an important difference. He committed right then and there to attend every IEP meeting he could after that. He never missed one.

All these years later, we have both found our places in various other areas on the home team. That is to say, each of us has settled into our sweet spots as teammates in caring for Carly. For example, he keeps Carly busy wrestling or snuggling by the tv while I make dinner. Afterwards, he washes dishes while I hang out with Carly. We discuss things like budgets and health plans, but he maintains most of the paperwork and spreadsheets for her SSI, insurance, and waiver. I focus on writing the narrative portions of annual plans and guardianship confirmations.

Dad cleaning kitchen while mom reads book with child on couch.

It isn’t about whether we are pulling equal weight or that the number of hours either of us puts into the process is comparable. It is about how we are learning to leverage and optimize our own unique strengths, talents, capacities and perspectives to ensure the Carly, our marriage, and our family thrive.

It’s not like we have achieved perfection — not by a long shot! But a good process is underway. In some ways, we have fallen into our roles naturally or intuitively. In other ways, we have had to be more intentional. In any case, we have some clarity of understanding about how each of us adds value now. And, though we’ve been sufferably slow to grow in this area, we’re getting better at overtly expressing appreciation to each other more regularly too.

We are also trying to stay alert to how and when adjustments are needed. We’re both willing to step into the other person’s role, when necessary, and have each other’s back. So, when one of us is sick, for example, we know what the essential things are and how to step into each other’s shoes for a short period of time. And we know what is not essential and can be left for a time when circumstances “normalize” again. God forbid we need to translate this strategy to a long-term situation, we have some general confidence that either of us would have a foundational strategy from which to build. For sure, a whole lot of new building would have to happen (tremendous support would be needed if either of us ended up having to do this without the other) but having common understanding about the essential basics gives some powerful peace of mind. Beyond that, we must simply pray.  

Tiredness after household duties.

How the roles play out in your situation will not look like ours. You have your own unique skillset and temperament. So does your spouse. So do any other people collaborating in caring for your child or loved one. It will be richly satisfying, faith-building and rewarding for everyone when you agree to explore the array of needs involved and discover each other’s sweet spots.

RELATED: 8 Habits of Caregivers with a Robust Support System

You and your team may benefit from a traditional SWOT analysis. Periodically review the division of labor in your home in these categories: S=Strengths, W=Weaknesses, O=Opportunities, and T=Threats.

Banner using icons to illustrate SWOT Analysis concept.

Such a review may help clarify roles, validate or affirm team members for their contributions, highlight gaps in coverage, reveal needs for fluidity, identify needs for more delegation or collaboration, support healthier boundaries, confirm why someone is needing more rest, and bring greater respect to those whose contributions are more indirect but no less valuable (e.g., someone serving as the “primary breadwinner” outside the home).

Examples of Responsibilities In the Caregiving Household

Note: This is certainly not an exhaustive list. And these items are listed in no order of importance or priority.

  • Monitor health and wellbeing
  • Manage medications
  • Manage and coach behaviors
  • Oversee, assist or implement bowel/bladder regimen
  • Oversee, assist or implement feeding program (This may include special diet, special feeding supports, NG tube, G-J tube, and other extra prep needs.)
  • Plan and prepare meals
  • Shop for the household (food, clothes, etc.)
  • Monitor daily/hourly nutrition and hydration
  • Provide support during night wakings
  • Plan and coordinate schedules which may include medical and dental appointments, therapies, school activities, caregiver support staffing, volunteers
  • Research medical/developmental conditions, therapies, programs
  • Attend IEP or 504 Plan meetings and provide input on documentation
  • Implement or oversee curriculum and/or therapies and/or vocational-rehab program
  • Maintain an orderly home including medical and incontinence supplies, adapted equipment, toy hygiene/rotations, etc.
  • Maintaining housekeeping including extra soils created by the disability situation (e.g., messy eating far exceeding typical developmental stages, behaviors that may include pantry invasion)
  • Wash and fold laundry which can involve upholstery, protective pads, frequent bedding changes, etc.
  • Put out trash including diaper pails, sharps containers, and excess medication disposal
  • Mend, sew, or purchase adapted clothing
  • Fill water softener and change furnace filters
  • Pay bills, balance the checkbook, audit finances (bank account balances, credit cards), do/coordinate taxes
  • Hire/train/supervise nursing staff, PCAs, and paid caregiver support staff
  • Recruit/train/coordinate/supervise unpaid volunteers
  • Share in parenting and discipline (which can include the involvement of behavior therapists/coaches)
  • Complete regular paperwork for schools, doctor appointments, therapies, church, state/county
  • Organize/maintain documentation (e.g., guardianship/conservatorship applications and annual renewals, wills, disability/social security receipts, IEPs, 504 Plan, medical records, waiver/grant/respite budgets)
  • Tend the yard and gardens (e.g., mowing, shovel, weeding)
  • Complete or arrange household repairs and/or modifications (e.g., grab bars, ramps)
  • Maintain vehicles which may include adaptations for wheelchairs, youth car seats, seat protectors, handicapped license plates

Does seeing this extensive list grow your awareness and appreciation for all that goes into caring for your child, grandchild, sibling or friend? Does it intimidate or overwhelm you? Does it trigger resentment or a spirit of competition in your family as you reflect on why you may carry an unbalanced portion of the responsibility? Can you give your team a pat on the back upon remembering the many responsibilities you are juggling together?

It is about how we are learning to leverage and optimize our own unique strengths, talents, capacities and perspectives to ensure the Carly, our marriage, and our family thrives.

It is my prayer that the list will empower you to embrace opportunities. Invite conversations about how to adjust for a more balanced system that optimizes individual and family strengths. Also, let it be an experience of receiving reassurances from God that fill your emotional, physical, mental and spiritual fuel tanks. Let God be your utmost Anchor of encouragement and strength so you can serve generously and even sacrificially but cheerfully.

Ephesians 3:16
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being.

I hope this post can be a springboard for greater appreciation, empathy, and compassion — for yourself and others. I hope it helps you recognize that your ultimate strength comes from Jesus.

Tell us in the comments about what helps you and your caregiving team. Is the list missing something? What have you been learning from your role as a caregiver? What encourages you as you love and serve your family?


Lisa Jamieson, co-founder Walk Right In Ministries

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.

A Father’s Day Tribute

It’s Father’s Day this weekend and I have a warning: I’m not going to be buying you a greeting card. I’m learning that my own words are important to you. I want my words to speak loudly to your soul—in positive ways that strengthen your spirit. I’m learning that a steady dose of personalized appreciation and encouragement from me is essential. I’m realizing that I can find more and better ways to express how much I value you. And I want to teach our kids to do that too.

I am thankful…

  • You don’t try to be just like all the other dads. I’m sure it’s tempting to compare yourself with others who might seem to be doing it better. I compare myself to other moms sometimes too. If there are any comparisons, I want other people to inspire us, not drag us down.
  • You are learning to be yourself. It makes my heart glad that you are uniquely you. And you are well-equipped to be the dad our children need.
  • You provide for your family. Beyond the ways you contribute financially, you also fix things, help make things, play games, wrestle on the floor with the kids, share ideas and perspectives, speak reason, plan adventures and make us laugh.
  • You fill a role that I cannot. While I may spearhead things like the IEP, your voice in those meetings still matters too. While I often run point on things like therapies and grocery shopping, your oversight on car, yard work and home maintenance eases my mind! I’m grateful we can keep working to optimize our personal strengths on this crazy team.
  • There are many ways you make me feel supported. I promise to call those out in specific ways more often, because I want to encourage you and reassure you of my appreciation. I feel less alone on this special needs journey and more like part of a team because of you.
  • You bring a sense of stability to our chaos.

I’m sorry…

  • Sometimes I have fought harder for a great IEP than I have for a strong, healthy relationship with you. Our children need that. We all need that.
  • Sometimes I resent the opportunities you have outside of caregiving. I don’t want you to feel guilty about that. I’m just being honest.
  • I don’t always cooperate with your efforts to lead and serve our family. I want to give you space and freedom to lead from your own strengths and style. I hope you’ll cooperate with mine, too. I pray that our individual roles in this family will not be in competition, but complementary.
  • For those times when my actions and words—or lack of words—have discouraged you.

Please forgive me.

Photo credit: Nathan Anderson on Unsplash.com.
Photo credit: Nathan Anderson on Unsplash.com.

I understand…

  • It’s hard for you to stay engaged. By the nature of your work and needs for your own self-care, your time at home can be limited.
  • You didn’t come into fatherhood with role models for what it looks like to be a special needs parent. Your own dad wasn’t perfect, either.

I hope you…

  • Grow increasingly confident and energized as a father—just do YOU!
  • Feel safe to be yourself with us—to share your grief, weaknesses, fears, disappointments, hopes and dreams. Even if we can’t “fix” them, we can honor each other in the process of life. I value knowing your heart.
  • Find connections with more dads who understand the road you are on, as someone with a child who has special needs. Just as I am building friendships with other special needs moms, I am learning there are men all around the world walking in shoes like yours and they want like-minded friends, too.
  • Keep learning with me. There are too many things for just one person to know and understand about how to help our child(ren) thrive. Our two perspectives are better than one when it comes to understanding a diagnosis, navigating our medical complexities, evaluating therapy options, implementing a special diet, budgeting for special needs and home modifications, advocating for a fair and inclusive education and keeping on top of insurance matters along with all the regular matters of the day.
  • Join with me to find better ways of tag-teaming on caregiving, so each of us has adequate opportunities for self-care.
  • Find regular encouragement. And I hope more of that will come through me and your family.

I am looking forward to another year of parenting with you. Your partnership matters and I know we are the team our child(ren) needs. No matter our circumstances, we get to laugh together, cry together, try new things, experience new adventures, learn from each other, forgive each other (over and over again, as each of us is in-process) and grow stronger as the unique family that we are. None of us is perfect. We’re a work-in-progress. And that process finds positive momentum when we stick together.

You are deeply loved. Yes, the kids and I love you! For sure we do. This Father’s Day, we are committed to trying harder to express that to you on the daily. We want to get better at telling you very specifically why we love and appreciate you so much. Thank you for being patient with us.

I love you and thank God for you.

This article first appeared on the Key Ministry blog in June 2020.


Lisa Jamieson

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 www.WalkRightIn.org 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 www.lisajamieson.org also provides encouragement for people who find themselves in challenging places.