Thriving Caregivers Prioritize Soul Care

Sometimes I have an opportunity to escape being a mom, wife, and the primary caregiver to our adult daughter with Angelman Syndrome. It may just be for a couple of hours but one rather simple and satisfying way I can do this is to take a long bath and read a book or magazine. I might even give myself a pedicure. It’s a luxurious time of pampering to light a candle, pull out the Epsom salts and indulge in some “me” time.

Truth be told though, I could live without the pedicure and even the soak in the tub. What I cannot really live without is some time to myself to organize my thoughts, to rest from my responsibilities, to remember who I am apart from loved ones around me and to renew or deepen my connection with God.

The pampering is sweet and valuable. My flesh cries out to feel cared for. But it’s the solitude and spiritual intimacy that are my lifeline. That’s where I get in touch with my soul and the Creator of it. Both are important — myself and my soul — but I need to keep these things in balance or the cost is great to me and to others.

One reason it is tempting to neglect the balance is because the world and our culture lure me into thinking that self care and soul care are one and the same. There can be some overlap between the two but, for the most part, they are not the same at all. In fact, differentiating them has eternal implications.

Self-care fuels your body and mind.
Soul care fuels your spirit, your sense of purpose, and your hopefulness about the future.

Self-care will tend to keep you thinking about yourself and relying on your own strength.
Soul care points you to Jesus, your ultimate and eternal Source of power, purpose, help, and hope.

In the battle between self care and soul care, your soul always wins.

As caregivers, we can be vulnerable to getting our priorities out of whack. We might function in survival mode or on autopilot. Our opportunity for thriving lies in learning to do both soul care and self care in an energizing and God-glorifying balance.

Psalm 107:9
For he satisfies the longing soul, and the hungry soul he fills with good things.

I hope you won’t neglect either one but recognize that you can actually live without one but not without the other. Your very life depends on the state of your soul.

RELATED: Respite Rhythms (Part 2): How Much is Enough?

What are you best at — taking care of yourself or taking care of your soul? Where is your focus?

You will be a better caregiver for others when you take good care of your soul.

Why is soul care so effective?

Soul care gets to the root of what most deeply and purely fuels us. Like our vehicles function better on premium fuel, the quality of what you feed your inner spirit influences how you function. When your energy and motivation are depleted, self care might tide you over for a while. But soul care will nourish and empower you in a fundamentally different way and for fundamentally different purposes.

Jesus prioritized soul care but stayed on top of self care too. He paid attention to meeting his personal needs eating healthy foods, taking time to relax, getting the sleep he needed (he even took naps), and doing a lot of walking (Matt 26:18, 20; Mark 1:16, 3:23, 4:38; Luke 7:36; John 10:40, 12:2).

Jesus also sought the company of friends (Matt 26:36-38) and enjoyed solitude. But he made personal prayer time a top priority and regularly started his day that way (Mark 1:35).

Prioritize soul care but stay on top of self care too.

Jesus also understood that maintaining healthy and God-honoring boundaries were necessary and demonstrated His trust that God would be the ultimate Supplier, Caregiver and Advocate. He was never in a hurry. He was interruptible. He understood that one way God fuels people and enriches their lives is when they are generous and sacrificial with their time, energy and resources by following Him into the world.

Proverbs 11:25-26
Whoever brings blessing will be enriched, and one who waters will himself be watered.

You can be encouraged and energized knowing that God highly values what you are pouring into your family and others. Just remember that God will ease that load when you carry it His way and only bear the parts He has called you to.

Matthew 11:28-30
Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”

We tend to put more things in the category of soul care than really belong there and then wonder why those things don’t refresh or sustain us for longer than they do. 

There is some overlap but far less so than what the enemy of your soul wants us to believe. A caregiver who enjoys little or no time for hobbies can still thrive. But a caregiver who harbors unforgiveness will struggle. A caregiver who relies too heavily on a well-ordered household for a sense of peace will gain only temporary relief from housecleaning. The state of one’s home cannot offer the kind of life-giving peace that comes from surrendering control. Our surroundings offer an illusion that is helpful but not sustainable and lacks eternal implications.

We are called to choose our “burdens” carefully and learn to wear the “yoke” alongside Jesus. Soul care involves a partnership with the Holy Spirit.

Self care is fleeting. Soul care is forever.

Don’t neglect self care or soul care but recognize that you can actually live without one but not without the other. Your very life depends on that state of your soul.

By all means, indulge in that pedicure — or whatever it is that refreshes you! Just consider prioritizing something that is truly fuel for your soul and then make self care a reward for choosing well.

Galatians 5:16-17
So I say, walk by the Spirit, and you will not gratify the desires of the flesh. For the flesh desires what is contrary to the Spirit, and the Spirit what is contrary to the flesh. They are in conflict with each other, so that you are not to do whatever you want.

Romans 11:36
For from Him and through Him and to Him are all things. To Him be glory forever.

In the battle between self-care and soul care, your soul will always win.

RELATED: 3-part series on Respite Rhythms

RELATED: Is Soul Care Biblical?


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.

Respite Rhythms (Part 3): Pace Yourself!

This is Part 3 in our series and Respite Rhythms and another installment in the ongoing discussion about the 8 Habits of Caregivers with a Robust Support System. Today, I’m sharing some “pro tips” for you to consider. These ideas have been gathered from personal experience and numerous conversations with other family caregivers throughout over 20 years in ministry.

NOTE: Let me apologize, in advance: this is another long post. This subject is close to my heart, so I’ve had a lot to say about it. Rather than break it up into an even longer series, it seemed important to drop it out here in virtual land and let you digest it at your own pace. Hah! See what I did there? 😉


If you are the parent or other family caregiver of a loved one with disabilities, you will understand the scarcity of things like rest, discretionary time, spiritual retreats, or even spontaneous intimacy in the marriage bed. It may not be possible to get the frequency or nature of breaks you hope for. But it is possible to achieve an adequate rhythm of respite and find a reasonably balanced pace of refreshing activities.

In fact, it is essential for caregivers to achieve some reasonable balance in this area. Without it, we are at risk of things like bitterness, burnout, and breakdown. Adequate respite rhythms keep us resilient in the short term and sustainable for the long haul.

Make trusting God the foundation of your respite planning.

At Walk Right In Ministries, we’re big cheerleaders for people learning to walk in faith. We understand that it often starts with just a tiny bit of confidence or a sense of God’s prompting to start in a right direction by taking one single step toward trusting God.

A first step may be to set a date. You may not even know what you’re going to do with the time yet. Another approach is to be on the lookout for activities of interest. You may have noticed an upcoming event that would bring you joy (e.g., Christmas concert). Sometimes the first step will be identifying something you aspire to do (a destination you’ve always wanted to go, a new restaurant to try). Finding the date will come later.

For Larry and me, there have even been times that we saw an opportunity when having help at home would be easily established so we locked in a general timeframe with the caregivers (sometimes more than one tag-teaming in shifts) and only later started planning out specific details about where we would go, what we would do, and exactly how long we would be gone.

RELATED: Respite Rhythms (Part 1): Start with Trust

Experiment with the length, frequency, and nature of your breaks.

Some things absolutely must happen daily while other activities do not. Some trial-and-error can be both helpful and fun. (This can be especially true for couples when it comes to finding your rhythm in the marriage bed.) Whether you take a walk around the block a few days a week, take a date day off work while kids are at school or plan staycations, vacations, and tiny-bit-away-cations, find the kinds of opportunities that work for you and your family.

Remember the scrapbooking story from last week? Done is better than perfect!

Be alert for opportunities to grab a spontaneous break or extend a planned one.

Sometimes the best thing you can do for yourself and those you love is take a nap. Learn to grab a power nap whenever a window of opportunity presents. If you need to set your pillow on the kitchen table as a reminder, do it. Getting up again may be painful but science shows that it’s worth setting a timer and going for it. Check out this article from the Sleep Foundation explaining nap science and napping tips here.

The next time you are booked for a haircut, consider adding on another service (e.g., manicure, pedicure, 15-minute chair massage) or run a fun errand to the thrift store on the way home.

Since half the battle of finding time for the haircut may be arranging help at home, asking your care supporter if they can add an hour may be easier than you think. You might be surprised how much difference one extra hour or one more night can make now and then. It can be easier to add on supports for a single respite experience than recreate all the logistics for a separate time.

I’ve discovered this to be true in my marriage respite as well. Larry and I find helpful refreshment from leaving the house for two or three hours to have dinner together. And highly coveted overnight getaways bring sweet renewal of connection between us. But I’ll be honest, one-night getaways are not always more helpful than a few hours out for dinner. By the time we check into a hotel room exhausted yet still fully engrained in the routines of home, it is very difficult to experience a meaningful time of it until we hit the 48-hour mark.

We know caregiving couples who have so little privacy and help at home that they have booked a hotel room overnight just to use it for an evening. Their evening may include take-out food and intimacy before heading right back home after using the room for only three to five hours!

Through trial-and-error, Larry and I have found that making an escape of at least two nights away, three to four times a year, is a tremendously helpful pace for us. That’s certainly not to say we always get it, but we know that’s a good “adequate rhythm” goal for us, so we work toward it.

One time when we were away for two nights, we sat down to lunch on the second day and Larry wistfully said, “I wish we’d booked a third night. It would have made such a difference.” Within minutes, we were texting home to see if the team would have flexibility to extend their shifts so we could stay away an extra night. It was an accidental discovery and blessing that has changed the way we approach planning the length of future getaways.

We have come to realize that a full three nights away makes all the difference in the world in terms of the quality of refreshing we gain from it. At that point, we’ve had an adequate opportunity to disconnect mentally and emotionally from what’s going on at home.

Of course, a full three-night getaway doesn’t happen nearly often enough. And none of this means we will turn down a single-night rendezvous. But we know what we can and cannot expect to get from these opportunities. And that is helpful.

Whether we are laying down for bed at home or away, we always pray, Lord, please make MUCH of this little!

Balance the pace of your respite to include both snacking and feasting.

The word respite may bring longer breaks to mind — weekends and week-long vacations. But don’t underestimate the benefit of a short break. Something really is better than nothing.

Try creating two lists of activities that give you any degree of refreshment. Fold a page in half vertically or draw a line creating two columns. Write SNACK (short, quick or easy breaks) at the top of one column and FEAST (generous rest stops) at the top of the other column. Keep the list hand for spontaneous inspiration and strategic planning. Add new ideas as they come to mind too.

Recognize that you need a balanced “diet” of activities from both lists. And to carry the food metaphor just a little farther, fasting is not healthy when it comes to respite breaks.

The same is true about prayer and reading scripture. You may not be able to join that in depth Bible study this year — or even next year — but you can download YouVersion to your phone so scripture is handy in the clinic waiting room or during those late-night hours awake with your child. (The app offers an enormous variety of reading plans and devotionals to help you get started and/or stay on track.) You might take in a 6-week small group study now and then. Or join with other family caregivers for Bible-based discussion as often as your schedule allows.

RELATED: Our Constant in the Chaos

Get eye-to-eye with a loved one and reconnect.

We don’t all have the same degree of need for deep affection with others. We don’t all have the same degree of need to feel part of the broader community either. But every single person needs some sense of connectedness to others. We are made in the image of God and that means we all need to feel like we belong somewhere, and we all need some exchange of love and affection in our close relationships.

I was recently reminded a sense of connection happens for me when I went to out to eat at a restaurant with my husband for the first time since before the pandemic. At home, we sit at a corner of our dinner table (90 degrees to each other) or side-by-side as one of us helps feed our daughter Carly. The side-by-side format was predominant during the pandemic. All of a sudden, we were eating straight across the table from each other, and I realized how intimate and encouraging it felt to look him in the eye while we ate and talked and shared a special evening.

We don’t really need to leave home to find that kind of connection. We simply need to be more intentional about how we position ourselves. Getting eye-to-eye with your loved ones will bring refreshment to you and to them.

Pay attention to how you and others in your family are uniquely refreshed by connections. Each person thrives in a unique rhythm that includes the number of people they want to be close to, how frequently they want to connect, and what they need to get out of that time with others.

RELATED: Tips for Caregivers about Feeling Valued and Competent

Maximize the energizing power of anticipation.

Spontaneous moments of rest may rarely come. So, having planned breaks on the calendar will help you pace yourself mentally, emotionally, spiritually, and physically. Knowing something is out there on the horizon may be just the thing to get your through a particularly hard moment, day, or week. Don’t under-estimate the energizing potential of anticipation. Anticipation of an upcoming break can help a caregiver keep situations in perspective, maintain a positive outlook, and hold on to hope.

Get things on the family calendar and don’t apologize for taking appropriate breaks. Your next weekend getaway or bubble bath probably won’t come soon enough. But seeing it coming up on the calendar may help you get through another day. If you happen to feel guilty for taking breaks, ask yourself two questions as a “litmus test” about the quality and legitimacy of your break:

  • Is the nature and duration of my activity healthy and godly?
    See Exodus 20:3, Mark 9:42, Romans 12:1, Romans 14:13, 1 Corinthians 6:12, and 1 Corinthians 10:23.
  • Is my taking this break a positive model to my spouse, children and others of what their own respite can look like?

Plan two ahead.

My husband, Larry, and I have learned that when it comes to overnight getaways, it is incredibly helpful to start that experience already having a plan in place for the next time. “Seriously?” you may say, adding, “I have enough trouble planning one break!” Bear with me while I explain.

Before we even leave for the night or while we are gone, we try to put a date on the calendar for the next time. It may be dinner again in a couple of weeks or an overnight 6 months away. But knowing it’s coming reduces some of the sting and disappointment of seeing the present moments coming to an end.

Earlier this summer we enjoyed a 5-day staycation alone at home while one of our daughters took Carly to their grandparents’ home for a “camp-like” week together. Needless to say, this was an indescribable gift to us. In the rare times we’ve had such a break, we have wrestled to fully enjoy it because we grieve how long it will be before it happens again.

When “camp week” came around this summer, it just so happened we had also planned a two-night anniversary getaway to happen about a week after they returned. On multiple occasions during “camp week,” I caught myself lamenting how quickly the week was going by. I was so grateful for the chance to take that thought immediately captive to the vision of being alone with Larry again a few days later. Whether that second tiny-bit-away-cation had been days or months following the staycation, it still would have been a powerfully comforting vision to hold.

Don’t let the enemy steal, kill, or destroy your fueling process.

Larry and I have learned to expect that there will be spiritual warfare around respite. Ah, let me count the ways this has manifested for us and the stories we’ve heard from others! The enemy’s favorite battle ground is the family and our relationship with God. We should not be surprised. We should approach it, not as victims, but as the victors we are in Christ!

The enemy has interrupted plans or caused the complete cancellation of them. We have frequently found that Carly’s sleep is at its worst in the days before we leave (to steal our joy in preparing to go) or the days after we return (to destroy the benefits we gained in getting rest).

Too often, warfare has taken the form of conflict between Larry and me. It is not uncommon for us to encounter tension or division just before, during, and/or immediately after having some time away together. Ultimately, we have become more proactive in praying about this and being on guard about sensitivities and vulnerabilities. We expect them and watch for them so that, when they happen, we are ready and less inclined to let something get under our skin. These days, instead of quickly escalating to frustration and anger when Carly keeps me awake for three nights before I leave, I do these things:

  1. Pray assertively, in the name of Jesus, against the powers of darkness while reminding myself that Carly and my husband are not my enemies.
  2. Plan little or nothing for the first morning away in a hotel so that I can sleep until noon if I want or need to.
  3. Learn to laugh with God at the foolishness of an enemy who thinks we can be easily shaken. I shake my head and speak the victory of Jesus shed blood over the situation saying, “Not today, you devil. Not today!”

The fuel tanks of our souls need things like encouragement, rest, joy, hope, peace too. What restores those things is different for everyone. It helps to learn your caregiving sweet spots and try to stay in them as much as possible. It’s also necessary to stay nourished by God most of all. He knows you better than you know yourself. He intimately knows what you need. And He alone has ability to perfectly meet your needs in the best ways and times.

RELATED: Read how Stephanie O. Hubach explains three possible responses to the relentlessness of disability in chapter 4 of her book Same Lake Different Boat.

Prioritize soul care but stay on top of self-care too.

Self-care and soul care are not entirely the same thing; Sometimes there is overlap but these two things are not to be confused. Self-care fuels your body and mind. Soul care fuels your spirit, sense of purpose, and hopefulness about the future. Self-care tends to keep us thinking about and relying on ourselves. Soul care points us to Christ, our ultimate Source for purpose, help, and hope.

Don’t neglect either self-care or soul care but recognize that you can actually live without one but not without the other. Your very life depends on that state of your soul.


Find a rhythm that works for you and then make it a priority to seek out help and guard that time with kind and respectful boundaries.

No matter what plans we make to establish respite rhythms, we are best off to hold them loosely while not giving up too quickly. We can expect very little satisfaction from the things of this world. There will be few perfect breaks. The full weight of our expectations about respite or anything else ultimately rests on the shoulders of Jesus.

With our expectations on God, we can anticipate the surprises of His love and trust that any thwarted plans will ultimately be redeemed in some way.

Respite won’t happen if you don’t prioritize it and start taking steps in that direction. You don’t have to see the whole plan and logistics worked out all at once.

Just take the first step in faith.


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.

Respite Rhythms (Part 2): How Much is Enough?

This post is part of an ongoing conversation here at the blog about the 8 Habits of Caregivers with a Robust Support System. We have been revisiting each of the habits with stories and tips on each one. Again today, we’ve been focusing specifically on Habit #6: Find your pace for an adequate rhythm of respite.

The goal of developing an adequate respite rhythm is to maintain reasonable health and well-being. A looming question then is:

How much respite is enough respite?  

Unfortunately, the intensity of caregiving required of some parents and family caregivers doesn’t allow for anything close to the ideal lifestyle we need or hope to enjoy. But some reasonable degree of rest and refreshment must be achieved. It’s a matter of physical, emotional, spiritual, and relational health for the caregiver as well as quality of life for a family and the one needing the aid of others.

Not every activity or respite strategy brings equal amounts of refreshment. And there is no quantifiable formula that equates to enough. I have a personal story that may serve to bring some perspective as you figure out your own unique and personalized rhythm. But before I share the story, allow me to encourage you to enjoy some experimenting. Managing respite is a skill to be honed. It’s a learning process that benefits from some trial-and-error in several key areas of life.

Create a list of activities that feel, to any degree, replenishing. Keep it handy (maybe a note in your phone) so you can add new ideas at any time. Consider asking your loved ones if they have noticed any specific activities that seem to energize you. Their answers may surprise you or enlighten your future choices.

Ask other family caregivers what would be on their lists too.

Don’t let tight finances keep you from discovering a creative approach. Just the other day my friend posted a photo on social media demonstrating how to set up a romantic tailgate picnic in the back of your care. That’s now on my To DO list!

We have the option to pace ourselves for the long-haul or to live our days in tension, fear of running out of steam, outright panic, at risk of injury or headed toward burnout. This requires some self-awareness and taking a close, honest look at our own areas of strength, limitation and vulnerability — accepting that each one of us is a combination of those.

Pay attention to what is really triggering your stress. If you simply lump all of your overwhelm into a single bucket called “stress,” you may not get to the root reason underlying your fatigue or anxiety.Stress builds for such a variety of reasons: lack of sleep, repressed grief, feeling unheard, control issues, lack of boundaries, perfectionism, and difficulty trusting God.

Pay attention to what is really triggering your stress.

We respond differently to people and situations when we are rested. Be intentional about noticing how you react to your responsibilities — emotionally and behaviorally — during the hours or days before to getting a break. Then pay equally close attention to how you react — internally and externally — during the hours and days after you return from a break. Taking an opportunity to step away brings perspective and allows for a reset.

When it comes to getting breaks from caregiving responsibilities, we often have to plan ahead and then hold our expectations loosely at our house. We try to make plans for breaks with some degree of regularity whether that respite looks like a nap in the middle of the day, time alone to organize thoughts, exercise to decompress, a few hours away for a haircut and errands, a lunch date, spontaneous or planned intimacy in the marriage bed, an overnight getaway, or a vacation.

Each of us needs enough time alone. We also need enough time as a couple, enough time with each of our children, and enough time as a family together. As our adult children have moved into independent lives, that family time is an extra gift but well worth praying for and being creative about.

A note about intimacy: Some couples need to experience sexual intimacy twice a week to maintain satisfying connection. Another couple may find that monthly is adequate for them. Marriage in a caregiving family will likely require many compromises and generous amounts of creativity.

Many years ago, I was away at a weekend scrapbooking retreat with friends. Many of those women were avid scrapbookers who spent a certain amount of time throughout the year working on their projects. For me, it was a once-a-year opportunity. I really needed the time with friends. But I desperately wanted time to sit in my own thoughts for a while too looking at pictures and being super-efficient about creating my albums. Finding my rhythm for a satisfying weekend was tricky.

Those women were creating such fun pages of memories. By the end of the weekend, they would finish 15 or 20 gorgeously detailed pages. Though I was both inspired, I chose another approach — fast and cheap!

Because efficiency is always my tendency and this was such rare time for me after Carly was born, I would go into the weekend hoping to finish at least one entire book filled with 40 pages or more. One year I completed two full books for my daughter Alex’s keepsakes — one book from birth to elementary school and one book reflecting her middle school years. I was on a mission!

The other ladies sometimes teased me for being so driven. And I’m sure I was prideful about it sometimes. I also got stuck at times, stalling out of my hyper-efficient rhythm. I would lean back in my chair and whine in frustration for all to hear. Oh, the grace those dear women had for me!

One day I expressed frustration that I wasn’t staying on pace with my productivity goals. A dear friend across the room called out the perfect words to get me going again. She said, “Remember Lisa, done is better than perfect!”

Everyone had a good laugh. Meanwhile, that was a precious reminder and encouragement to me. She understood. I didn’t have the luxury of getting too bogged down in details or too caught up in creative ideas (even though I absolutely love creativity and details). But the life I’ve been given has shifted my values and shown me I can be very happy with leaning into different priorities.

So, I pulled myself back up to my cutting table and got back to work producing at least four pages an hour through the rest of the weekend.

That phrase became a cheerful motto for future scrapbooking weekends. It also became a very helpful mindset when applied to life and other projects over the years. Most importantly, it has applied to taking breaks from caregiving. Larry and I have had to adapt too many romantic getaway plans to count over the years. But never once have we regretted pressing on with revisions and getting the break anyway, even if it seemed quite inferior from the original dream.

So, how much respite is enough respite?

When it comes to finding our respite rhythms, some is better than none, and DONE is better than perfect.

Philippians 4:11-13
I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through Christ who gives me strength.

RELATED: Seven Ways to Energize & Refresh Your Special Needs Family

RELATED: Best Practices of Refreshed Special Needs Moms

WATCH: Flourishing Families with Matt Mooney.

RELATED: Can Caregivers Expect Something Out-of-this-World?

Watch for the final instalment in this 3-part mini-series coming next week — Respite Rhythms (Part 3): Pace Yourself! We’ve got a bunch of practical pacing tips coming so visit the blog again next week. We’d love to hear ideas from you too. Share them what’s been working for you in the comments or contact us privately.


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.

Respite Rhythms (Part 1): Start with Trust

Parents, adult siblings, and others who care for someone with complex medical needs or developmental disabilities struggle to get the breaks and rest they need. The obstacles are numerous and varied so it is tempting to just quit trying. I’m here to suggest there is a way to approach respite that offers some satisfying and beneficial balance.

There is an adequate rhythm of rest to be found and it’s as unique as you are.

Now before you tune me out because your situation seems impossible, hear me out. I intimately understand many issues getting in your way. My own daughter’s medical and behavioral needs are tremendously complicated. I am hesitant to leave her in someone else’s care — for her sake and theirs. The reality is, even when I am desperate and my need for a break outweighs other concerns, relief is not always available. It is also true that I am often simply too tired, busy or distracted to investigate options. The idea of persuading helpers and facing potential rejection is exhausting too.

Probably like you, I’ve been tempted to minimize the need, ignore the need, or altogether give up trying to find ways to get my needs for rest met.

Yet some reasonable amount of regular refreshment is essential for having meaningful and enduring relationships, maintaining the physical and mental stamina, keeping emotionally balanced, and experiencing a sense of joy in ordinary life.

I tend to believe that I am my daughter’s most safe place. I feel a tremendous responsibility in being her primary protector. I can even tend to feel responsible for protecting others from her care. It can be hard to see the boundary lines between my responsibility for Carly and God’s capacity to ensure that she is protected, even if I am not always there for her.

Caregivers often have trouble believing that their constant caring can be interrupted without dire consequences. Tired caregivers may avoid setting limits on what their loved one demands. And they may have difficulty being confident that anyone else will do an adequate job.

Caregiver enmeshment is a symptom of lack of trust and even pride. “Ouch!” you might say. Believe me, I understand how vulnerable our loved ones can be. But let’s be honest, we are powerless over so much more than we choose to accept. We must never lose track of our personal limits — physically, mentally, emotionally — and what we are called to do. Then we must do no more and no less than that.

Moses’ own mother Jochebed had to face a similar recognition of her limits and trust God. She painted pitch on a basket to keep it safely afloat holding her son. But she ultimately put her trust in God when she set that basket in the reeds. His parents took a step of faith (Exodus 2). They could do no more and no less than that.

If I want God to do a miracle in my daughter Carly’s life, I need to get out of the way and give Him room to do it.

Matthew 13:58
And so [Jesus] did only a few miracles there because of their unbelief.

Almighty God has repeatedly shown us a model for patterned trust — and it often looks like rest. God created the universe in six days, then rested on the seventh day. God provided manna in the wilderness for six days out of every week — for 40 years — but not on the seventh day. He gave a double measure of manna on Day 6 so that everyone could and would rest on Day 7.

There are so many more rest and boundary patterns to be found in the scriptures. And there can be wonderful value in spending time exploring them. But one word points us to God’s motive — trust. God desires intimate relationship with His beloved creation. And trust is an utmost measure of intimacy.

We trust God by slowing down, paying attention to Him, setting all other loves and concerns aside, and trusting Him to use His power, wisdom, and provision for our best.

Jesus prioritized both personal boundaries (self-care) and prayer (soul care). In his book, Your Best Life in Jesus’ Easy Yoke, Bill Gaultiere suggests it is especially important for caregivers to “learn to set limits for their own soul care.” He points out that Jesus “had far more stress, far more pressure, and far more responsibility than any of us and yet he remained relaxed, joyful, and generous with people.”

You might be thinking — sure, but Jesus was God, and I am not! Well, true enough. Jesus was exceedingly committed to His Father and to His calling. Yet, we can learn a great deal from what Jesus models. More than that, we can rely on the Holy Spirit to guide, provide, and empower us for rhythms of grace and rest with Jesus as our Supreme Guide and Protector.

Mark 4:38-40
Jesus was sleeping at the back of the boat with his head on a cushion. The disciples woke him up, shouting, “Teacher, don’t you care that we’re going to drown?” When Jesus woke up, he rebuked the wind and said to the waves, “Silence! Be still!” Suddenly the wind stopped, and there was a great calm. Then he asked them, “Why are you afraid? Do you still have no faith?”

RELATED: Jesus Set Boundaries

HABIT #6 OF CAREGIVERS WITH A ROBUST SUPPORT SYSTEM
Find your personal pace for an adequate rhythm of respite.

As we launch into this three-part blog series on respite rhythms, it’s helpful to reflect on the definitions of three critical words while holding fast to our trust in God:

Respite
a short period of rest or relief from something difficult or unpleasant.

Adequate
good enough; sufficient for a specific need or requirement; of a quality that is acceptable but not better than acceptable

Pacing
walk at a steady and consistent speed; lead in order to establish a competitive speed.

Did you notice anything helpful from these definitions? Words that stick out to me include — short, rest, relief, difficult, sufficient, specific, acceptable, steady, lead.

I’m not a fan of the word “short” in this context. (We’ll talk more about that word later.)

That last word is especially intriguing to me. Lead! How often I have felt like a victim of my circumstances. My family is at its strongest when we follow Jesus’ lead in advocating for rest rather than allowing the situation to dictate our patterns. We often struggle to know how to wear the yoke of caregiving in strength. Like an immature ox, we strain and charge into the job forgetting that we can trust Jesus’ invitation.

Matthew 11:28-30
Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”

In caregiving as in all of life, we’re in a learning process. We don’t need to do it all perfectly. Progress toward the goal is a powerful energizer and encourager.

Begin asking God what kinds of respite you need to keep yourself in an acceptable and progressively improving pattern. How might you go about receiving a degree of relief that enables you to maintain reasonable consistency in your quality of life and the quality of care you are able to give your loved one?

Cultivating a robust support system is certainly part of this. But there’s more to it. We’re going to explore that over the next couple of weeks.

Because finding adequate respite rhythms holds such significant opportunity for caregivers, we’re devoting the next three posts to the topic. We’ll be exploring more ways of finding a reasonable pacing of refreshment in your family and/or marriage when living with someone who has disabilities and/or complex medical needs. Watch for Respite Rhythms (Part 2) next week.

Respite Rhythms (Part 1): Start with Trust
Respite Rhythms (Part 2): How Much is Enough?
Respite Rhythms (Part 3): Pace Yourself!

RELATED: 8 Habits of Caregivers with a Robust Support System

“Due to God’s common grace, no one exists in the extreme of complete brokenness. Due to the fall, no one enjoys the extreme of complete blessing.”

Stephanie O. Hubach, Same Lake Different Boat

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.

An Introduction to Special Needs Financial Planning

We’ve been sharing a lot lately about cultivating robust supports around your family impacted by disability. Since financial planning is one part of that process — and an intimidating part for many people, indeed — we wanted to take a side step in this post to share a some very practical insights from a respected friend. The following article first appeared at the Thrivent blog on June 24, 2021. It is re-shared here with the permission of Alex Gonzalez, the author of the article and a current Board member here at Walk Right In Ministries. Please feel welcome to make an appointment with Alex if you have specific questions about your own financial planning process.


Raising a child with special needs can bring joy and challenges in equal measure. Alex Gonzalez and his wife, Simone, know this well because their oldest son, Jake, lives with autism and Asperger syndrome.

Alex sums up his experience as a parent and his guidance as a Thrivent financial consultant with this simple message: “Try not to go it alone.”

“It’s stressful when a parent receives a diagnosis that their child’s physical or cognitive challenges will continue for life,” he says. “It’s normal to feel anger and grief. My wife and I needed to adjust our thinking in those painful times.”

Thanks to a supportive school district and careful planning, at 26 years old, Jake is working full time and living independently. Here is what you can learn from the Gonzalez family.

Create a financial plan unique to your family.

It is common for parents to prioritize their child’s needs over their own, especially financially. Studies by the American College of Financial Services indicate that 90% of special needs and disability family members and caregivers admit that caring for their loved one is more important to them than planning for their own retirement. But it could be even more difficult to help your loved ones if your financial future is in jeopardy.

Start by mapping out your own long-term financial needs.

Alex recommends parents work with a financial professional to create a financial plan* for long-term clarity. “It’s like the scenario where you’re on an airplane and the flight attendant tells you to put on your oxygen mask first before helping your child,” he says. For example, “If you don’t have the right kind of disability income insurance and become disabled, you will have a harder time helping your disabled child.”

Update your retirement income plans to include your child’s needs.

Putting together a solid retirement plan is also vital. From calculating retirement income needs to setting strategies to optimize Social Security or other government benefits, there are many things to consider. “Parents realize that their retirement budget could have an extra line item for their child’s supplemental costs,” Alex says. For example, accounting for the expense of experiences or services that aren’t covered by government benefits such as transportation expenses (car, travel, etc.) or therapy that isn’t covered.

And making sure that your beneficiaries are in good order is critical. Alex tells of a young adult whose parents passed away after naming their son as beneficiary of their 401(k) retirement accounts. If they had a financial professional helping with their plans, the parents would likely have known such a decision would jeopardize their son’s ability to receive the need-based government assistance he qualified for. While a situation like this is able to be remedied, it would likely take time and resources to help ensure your wishes are carried out as you intended.

Leverage the tax-advantaged ABLE account.

What is an ABLE account? An ABLE account (Achieving a Better Life Experience Act) was established by Congress in 2014 and offers individuals whose disability began before age 26 a tax-advantaged way to save money without affecting their government benefits. 

The law was in response to a potential roadblock that families faced in the strict qualification rules for need-based government assistance. Assets in the child’s name must not exceed the threshold of eligibility to qualify for Supplemental Security Income (SSI), a federal program that provides money for food and housing; and Medicaid, a state and federal program that pays for medical expenses.

The list of ways ABLE accounts may be used includes:

  • Basic living expenses
  • Housing
  • Education and training
  • Transportation
  • Assistive technology
  • Financial management and legal fees

ABLE account earnings grow tax deferred, and withdrawals are free from income tax if used for qualified disability expenses. ABLE accounts are set up through a state or state agency that administers them.

Family members and others may contribute up to the maximum yearly limit of $15,000. Government benefits will not be affected if the account stays under a total of $100,000. Any funds remaining in the ABLE account at the beneficiary’s death may be required to repay government benefits received while the account was funded. 

Consider setting up a special needs trust for your child.

An irrevocable special needs trust is a more complex planning tool that allows you or loved ones to leave assets to your child without affecting the individual’s government assistance. There are two types of special needs trusts, commonly referred to as first-party and third-party trusts.

First-party special needs trust:

A first-party special needs trust is funded with assets from the disabled individual, such as from an inheritance in their name. At the individual’s death, proceeds in a first-party trust may be required to reimburse Social Security and Medicare for services received.

Third-party special needs trust:

A third-party special needs trust is funded with assets from other loved ones, such as with proceeds from a life insurance policy. No payback is required from a third-party trust at an individual’s death.

Funds in either type of special needs trust may be used for a wide variety of expenses, including:

  • Education
  • Travel and recreation
  • Assistive and electronic equipment and appliances
  • Companion assistants
  • Vehicles

Special needs trusts are meant to supplement but not replace benefits an individual receives, making it especially important that a trust be properly drafted to accomplish its goals of preserving benefits.

Find the support you need.

Every family needs support—both personal and professional. Your inner circle for your family’s journey may Include grandparents, siblings, aunts and uncles. You might also lean on friends, your community and parent support groups.

You also may need to call in experts as well. Depending on your child’s needs and age, seek support from:

  • Your local school district.
  • A disability consulting service that can advocate for you and your child.
  • Housing assistance for special needs adults.
  • Employment agencies that encourage independence.
  • A special needs tax advisor.
  • An attorney for necessary legal documents and trusts.
  • A financial professional to help you implement your long-term financial strategy.

“These are not easy conversations, but empathetic financial professionals can help facilitate them as part of a special needs financial plan,” Alex says.

Connect with a Thrivent financial professional to create a comprehensive financial strategy that considers the overall well-being of your family. They can also help you find advocates and legal advisors who can assist your family.


Click here for the WRIM profile on the Thrivent Choice catalogue.

Walk Right In Ministries is approved as a Thrivent Choice organization meaning that Thrivent clients can direct their Choice Dollars to WRIM. If you are a Thrivent member, would you consider WRIM the next time you are dedicating Choice Dollars? (Thrivent pays the processing fees so that 100% of every donation through Thrivent Choice goes to WRIM and to build faith and community with special needs families. WRIM is also eligible to receive grant funding.) Find our profile link here.

We would also appreciate very much if you would take just a moment to give WRIM an online recommendation in the Thrivent Choice catalogue. You can do that here

Can Caregivers Expect Something Out-of-this-World?

I confess, I am one of those people who can have high expectations. I believe for the best in people. Even more, I expect great things of myself. I’m not looking for perfection, but I do highly value progress. I naturally see when there are opportunities for something — or someone — to grow or improve. Especially when that “someone” is me. It can be a lot of pressure. This inclination can be a helpful gift and it can be a great burden.

But I’m not offering this admission in order to wander into a detailed analysis of the strengths, weaknesses or sins of my observant, analytical, and deep-thinking ways. My aim here is to initiate some reflection on and potential transformation of the expectations caregivers can tend to develop.

You see, when parents find themselves in a life of complex — possibly even lifetime — caregiving, as we have with our daughter, Carly, we are regularly faced with hoping for healing, praying over various obstacles and longing for sleep. We are constantly grappling with expectations that life could get better or easier while frequently pushed to the limits of our capabilities and capacities. For me, this has been true countless times. It became exponentially truer when the pandemic hit.

Every special needs parent reading this has some idea about what I mean.

When the needs of our child are complicated by disability and/or medical issues, the bar of expectations is naturally raised. We are quite desperately reliant on having a robust system of supports in place in order to maintain quality of life. We need professionals to be on the top of their game. We need churches that will step up to a big plate. We need schools that are exceedingly creative and committed to partnership. We need our families and friends to be generous with time, courage and grace. Yes, so much grace.

We don’t want to be so needy. But we have found ourselves in an unexpected dilemma. Like it or not, caregiving radically alters our realities and mindsets about what we need and expect from ourselves, others, life, and God. We must work out our expectations of that system on a daily basis.

As we learn to live in attentiveness to the Holy Spirit, we can simultaneously feel confidently equipped for our responsibilities while utterly reliant on God.

When we feel things like weakness, grief, stress, anger, or pressure, we are tempted to look toward things of the world to strengthen us — or at least make us feel strong. But the world disappoints. People fall short of what we need from them. And we disappoint ourselves too. Our flesh may cry out in shame, bitterness, confusion, and frustration (Psalm 121).

It can be exhausting.

Unless we learn to do two critical things:

  1. Accept that this world will always fall short of our needs and expectations. People will let us down.
  2. Recognize the Sovereign goodness of God and the role He plays on our team.

Several years ago, I heard this sentiment in a sermon: “We must expect everything from God and very little from the world.” While I already appreciated that my ultimate hope and rest were in Jesus (Galatians 6:7-8), hearing that shifted my perspective and gave me a new mindset, particularly as it related to being part of a family with such signIficant needs.

In 8 Habits of Caregivers with a Robust Support System, I shared that one of those habits that effective, healthy caregivers manage to develop is this:

Adopt low expectations of the world — and out-of-this-world expectations of God.

If we had to boil all of this caregiving life down to one essential, game-changing habit, this one would be it!

Our culture values self-reliance. But if you believe that you are ultimately the one responsible for yourself and a loved one who experiences challenges and limitations, you are likely to carry burdens of inadequacy, shame, or low self-esteem. You may even burn out completely. If you are too demanding of others, they are likely to pull away and leave you feeling more alone than ever.

Caregiving radically alters our realities and mindsets about what we need and expect from ourselves, others, life, and God. We must work out our expectations of that system on a daily basis.

Receive this encouragement from Stephanie Hubach in her book Same Lake Different Boat:

“The life affected by disability is a marathon, not a sprint, and it requires the engagement of others who are willing to run the race alongside—mile marker after mile marker after mile marker. But in the relentlessness of disability is also found a hidden gift, a potential measure of God-reliance that empowers the ability to “go the distance.” Let us learn faithfulness borne of utter dependency on God.”

Only God is entirely trustworthy and perfectly capable of meeting your needs. This includes your needs for encouragement and acceptance. You can anticipate that He’ll surprise you with His generosity and creativity (Ephesians 3:14-21). God will absolutely bring justice and Kingdom purpose out of your adversity (Psalm 37:6). Psalm 104 and Psalm 136). And He will keep providing reminders about where your true help and hope comes from (Psalm 62).

While we are developing well-paced and well-purposed connections, we need to guard our hearts and minds about the balance of our expectations. It is a constant tension. As we learn to live in attentiveness to the Holy Spirit, we can simultaneously feel confidently equipped for our responsibilities while utterly reliant on God (2 Corinthians 1:8-11).

Sometimes people will surprise us and go beyond what we hoped (2 Cor 8:5). But, more often than not, our faith muscles will get stretched because someone is disappointing us. With God, we can always expect Him to do something wildly unexpected — and I mean always and way beyond our imaginings. (Eph 3:20).

That’s just the nature of a holy and omnipotent God.

Ephesians 3:14-21
When I think of all this, I fall to my knees and pray to the Father, 15 the Creator of everything in heaven and on earth. 16 I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. 17 Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong.18 And may you have the power to understand, as all God’s people should, how wide, how long, how high, and how deep his love is. 19 May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God. 20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. 21 Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen.

With God, we can always expect Him to do something wildly unexpected — and I mean always and way beyond our imaginings.


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.


If you’re needing extra confidence, encouragement, or tools to assist you in finding your caregiving groove, please reach out for professional help. Consider caregiver consulting or professional counseling for personalized care. Walk Right In Ministries is available to help you with education, consulting services, counseling, and referrals to meaningful resources. Our team collaborates with a broad network of local and national organizations dedicated to strengthening churches, communities, and families when disabilities are involved. Fill out the Interest Form or visit us at WalkRightIn.org to learn more.


A Robust Support System Requires Asking for Help

1 John 5:14
And this is the confidence that we have toward him, that if we ask anything according to his will he hears us.

Many caregiving families are hesitant to ask for help because they don’t want to lose their privacy, their sense of control, or their pride. If we’re honest, many of us aren’t even sure what we need or how to ask. Even more, we’re not confident people will respond. Fear of rejection is a debilitating condition that impacts the whole family.

“I don’t like to ask for help.”
“Asking people to help me makes me feel very vulnerable.”
“I’m a private person. I would rather not have strangers coming into my home.”
“I don’t want to be too needy.”
“What if nobody responds?”


These are all common and understandable sentiments. All of us in families facing disability or other complex situations understand the dilemma. Asking for help can be so painful. The proverbial saying feels so true about our helpers — we can’t live with them, and we can’t live without them. For a myriad of reasons, we’ll wind ourselves up with stress at night trying to figure out a way to thrive without needing to rely on anyone else.

Those with a robust system of supports say the costs are worth the benefits.

When we weigh the costs of trying to go it alone, our perspective is usually worth reconsidering. Play it out for a moment. What might life look like for you or other family members in 10, 20, or 30 years if you don’t start right now getting better at asking for help?

The consequences of avoiding it range from inadvertent neglect of relationships and imbalanced attention toward siblings to distanced relationships with grandchildren, exhausted and depressed spouses, and radically decreased earning potential for the breadwinner(s) in the home.

And that’s not all.

When we don’t yield to God’s prompting about asking for help, we get in His way. And it’s never a good idea to get in the way of what God is doing within and around us!

My friend, John Knight, shared this good word in his blog many years ago encouraging special needs parents to move out of God’s way and leave the opportunities wide open for community engagement to develop.

“God calls some to extraordinary acts of love and service.
And if they’re not given a way to express that, they become really really unhappy.
So, we need to stop being afraid of taking advantage.
We need to stop saying to ourselves, ‘someone needs it worse than me.’
We need to not let the enemy win.”

What happens if you put out the call for help but hear crickets? That was my husband, Larry, asked himself over twenty years ago when we were starting to recognize the significance of our daughter Carly’s needs.

RELATED: Carly’s Thanksgiving Story

We learned that it was simply going to require an act of trust — vulnerable trust. If it was truly God’s prompting that we ask for help, He would provide. He would do it in His way and timing. We’ve experienced seasons of remarkable, overwhelming help. And there have been prolonged seasons of painfully listening to crickets.

Over the years, we keep learning that when the response is less than satisfying to us, we should not necessarily receive that as a sign we have done something wrong or that God wasn’t answering.

When the answer we receive from God seems to be “no” or “wait,” it may be about someone else altogether. While He is stretching our patience muscles, it can be about something much broader than our situation. His purposes and ways almost always have to do with many more people than just you and me. For example, if our asking isn’t met with positive response, it may be that someone needs to see the need going unmet. It may be that someone — maybe even many someones — are not being obedient to their own call.

God will meet you with comfort and strength in the waiting season while others are sluggish or stuck in their sin. It’s hard to understand that process and it can feel like rejection. The sting on our hearts is understandable to God. We can ask Him to meet that need too.

If necessary, continue to wait. And don’t quit asking when the Lord prompts you to announce fresh reminders about your needs.

2 Peter 3:9
The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance.

Medical professionals told us Carly was unlikely to ever walk independently. In this photo, she is leading friends on a half-mile walk in the park during the Angelman Syndrome Foundation’s annual Walk in 2009.

Learn the Art of Delegation

You can’t assume people know that you need help or understand how they can contribute. Most care teams with robust support have learned to be bold and courageous about seeking help. They have learned to delegate. Delegation is an art, not a science. Ultimately, you’ll need to admit that you are powerless and need God’s help with circumstances, relationships, responsibilities, emotional health, and finding encouragement.

You can recruit help among friends, family, neighbors, church members. Recognize that your situation may tug the heart of people close to you but also be intimidating to them. They will probably need training. Sometimes that “training” starts weeks or even years ahead of time. It often begins by a person observing how you interact with your loved one in the natural course of doing life together. Allow people to hang around you, asking questions in their own way and time.

RELATED: “Let Me Know How I Can Help!” (This Will, Because They Won’t)

Build a List

In the meantime, make a list of tasks you’re unable to get to. Keep the list handy for when friends or family do offer to help.

Recognize that you may perceive rejection where it doesn’t exist at all. It is extremely common for caregivers to misinterpret the reasons why they are not getting the help they need or hope for.

RELATED: Defining Roles Can Encourage and Empower Parent Caregivers

His purposes and ways almost always have to do with many more people than just you and me.

Plan for the Worst Days

In between the really hard days, you may feel reasonably confident that you and your family can remain healthy and on track. But that is very difficult without support. Be careful about letting the good days lure you into complacency about cultivating healthy systems and robust resources. Enjoy those great days but plan for the worst days.

Your family will benefit greatly by being proactive in this area. Use the energy you have in those stronger times to be intentional and forward-thinking about how to foster the kinds of supports you’ll need when the harder moments or seasons come.

RELATED: 8 Habits of Caregivers with a Robust Support System

Give Invitations Without Obligation

I have learned one very valuable lesson from one of my own adult daughters who has been learning things through relationships in the national Sibling Leadership Network. Those who grew up with a sibling who had disabilities or other special needs explain that they want invitations to participate without the sense of obligation. Many appreciate offers to be included but they want to maintain their sense of autonomy while making their own decisions about how they get involved.

In her book, Same Lake Different Boat, Stephanie Hubach shares how Joseph, son of Abraham, maintained a proper perspective about the role of people in his life:

“Joseph’s God-centered focus did not preclude his asking for assistance from others. After Joseph revealed the dream of the chief cup bearer, he said to him, “When all goes well with you, remember me and show me kindness; mention me to Pharaoh and get me out of this prison” (Gen. 40:14). Joseph was not afraid to ask for help. Yet Joseph was not demanding. How can we tell? If Joseph’s comments after the revelation of the dream had not been an earnest request but a demand, he would have exhibited an incredibly negative attitude toward the chief cup bearer upon his release — and it would likely have been included in the narrative. Instead, Joseph’s God-reliance allowed him to have a proper perspective of people. He could be vulnerable and ask for help, but he knew his ultimate Helper was God himself.”

This invitation-without-obligation approach to asking for help offers valuable insight for many situations. When you make needs humbly and enthusiastically known without attaching them to expectations, you are more likely to get genuine support that is more effective, long-lasting and satisfying for everyone.

Accept Imperfection

It is almost always true — some help, even imperfect help, is better than no help. Parents are a child’s first caregiver and God uniquely equips every parent to provide for their children’s needs in certain ways that no one else can. Still, no parent can be everything their child needs. In our own weaknesses, we need God’s help, and we need support from others.

It is even true that our children benefit from having a community of support around them. One of the great gifts we can give our child with special needs, is a circle-of-support that develops and evolves around them for a lifetime of community.

It is hard to trust God as we release some responsibilities to others. They won’t always get it right. And with our vulnerable children, we tend to feel everything needs to be as close to “right” for them as humanly possible, all of the time. But if we were everything our child needed, they wouldn’t need God. And we should want them to learn their need for God.

Part of asking for help is learning to have compassion for ourselves in weakness. Let us also have compassion for others and give them reasonable space to “learn the ropes.”

Get Out and Live!

Yes, go out and live! Take some risks and trust that God will bring fruit from your investment in bravery. Find places, people and activities that inject some fun and joy into your life. Then let God knit and weave some of those connections you make for future purposes.

Remember, however, that friends and mentors don’t replace professionals where certain expertise is essential. This may include a financial advisor, personal counselor, marriage counselor, pastor, caregiver/peer discussion group, grief group, support group specific to a diagnosis, or other special interest or affinity group.

Examples of affinity groups that have greatly benefitted our family have included the Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics, National Association for Child Development, Key Ministry, Joni and Friends, our church, and, the Real Talk Connect group that I lead.

Siblings of someone with special needs can benefit from check-ins from a school social worker or participation in Sibshops. Seeking professional help for yourself and your family is common among thriving families impacted by disability.

Learn how to tap into respite and financial resources through your state or county’s Department of Health and Human Services as well.

The National Organization for Rare Disorders offers a Rare Caregiver Respite Program designed to give back to caregivers—the parent, spouse, family member, or significant other—of a child or adult living with a rare disorder. The program provides financial assistance to enable the caregiver a well-deserved break. Learn more about this opportunity here

Keep cultivating your friendships. We all need one or more close friends who will receive help and encouragement from us, and who will reciprocate that care and concern. This is someone you can call and say, “I’m feeling low today. I need some encouragement.” With a trusted friend, you might say, “Remind me why I do this and how I’m good at it.”

We need to develop a lifestyle that includes both giving and receiving. But at the end of the day, the world will always fall short of fully satisfying our cries for help.

Only God can do that.

Matthew 6:33
Seek first the kingdom of God and his righteousness, and all these things will be added to you.


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.


8 Habits of Caregivers with a Robust Support System graphic
Subscribe to the blog today and get the latest additions in this series directly to your inbox immediately as each releases!

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.

Robust Support Starts with Knowing Your Purpose

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

Caregivers who develop a sense of their purpose see several benefits. For example, when we understand the reasons why we are designed for and called toward a specific need, we are better able to stay focused on our goals and stick with them. A sense of purpose also helps us remember why we are valuable — and vulnerable. No important work will come without obstacles. Recognizing from the outset that hardship will come is part of what reminds us why we are a valued contributor in the first place. This stirs our compassion and reassures us that there are brighter days ahead. We’re spurred on to persevere and remain committed.

My own sense of purpose as a caregiver started from my aspirations to be a mom and my natural inclinations as a nurturer. But when we became parents of a child with disabilities, I needed more than that. I had questions for God about the much bigger picture and my role in it.

Our daughter, Carly, has complex needs that require a lot of us. Without a clear sense of God’s unique and valuable role for me in caring for her, I don’t believe I would be able to sustain the energy the situation demands. I certainly would not be anchored by a sense of peace and rest in my soul after doing it for more than two decades unless I recognized some Divine purpose and calling in this lifestyle.

It doesn’t take much for disability issues to become consuming for me and for our family. So, understanding what really drives me helps keep my emotional and logistical boundaries clear too. When my boundaries aren’t tended and my limits aren’t confessed, I start to develop an unrealistic sense of who I am and what my role is. I give my contribution too much importance and get prideful, restless, angry, or bitter. That’s when I’m prone to emotional and spiritual burnout too. It’s important for me to keep in perspective what my purpose is — and what it is not.

There are times when I wrestle with my insufficiencies, questions, and fears. I want to give Carly the best possible therapies and nutritional interventions, for example. I want her seizures, sleep, and anxiety under control. I want to help my family manage our stress well. Knowing my purpose is not to fix or prevent all these problems is incredibly freeing! But I really must keep taking my thoughts back to the truth of Who I belong to and what I’m called for. This keeps me from running aground on the deserted wasteland of woe.

We are human, but we don’t wage war as humans do. We use God’s mighty weapons, not worldly weapons, to knock down the strongholds of human reasoning and to destroy false arguments. We destroy every proud obstacle that keeps people from knowing God. We capture their rebellious thoughts and teach them to obey Christ. 

2 Corinthians 10:3-5

When identifying your purpose, consider your reasons for caregiving and your reasons for needing help.

What are your reasons for being in a caregiver role?

  • Your love for a child or spouse may inspire you.
  • You may have a vision for helping others experience a certain quality of life or achieve their full potential.
  • Perhaps you feel called by God to serve someone who needs help for a season or for a lifetime.
  • You may recognize personal strengths and gifts that make you uniquely equipped to help.
  • Your value of life and relationships may guide you.

Consider these scenarios:

  1. Jona feels her purpose is to protect her daughter from things that may harm her and fix the things that limit her.
  2. Jack sees his purpose being to support his son in achieving his potential in health, development, faith and friendships.

How might each of these parents experience life within their sense of purpose? Are their goals likely to empower them or create fear and added pressure? Are their aspirations reasonable? What might their purposes say about the source of their ultimate reliance? Who does Jona seem to trust more — God or herself? Does Jack’s purpose leave room for compassion in himself and others?


What are your reasons for needing a support system?

Maintaining a clear sense of purpose for having a support system frees you from guilt and fear about cultivating those supports.

  • Recognizing the long-term nature of your role may help you see the need to pace yourself with adequate help.
  • Appreciating that others need a balance of your time too (e.g., siblings, friends, spouse) can move you to prioritize help.
  • Prioritizing a team of supporters is good for you and it is good for your family.

It is worth noting here that the vision for the entire system springs, to some degree, from the primary caregiver. Caregiving parents will often form the foundation of purpose that flows to the rest of the family and sets a tone for other resources that make up the team. I’ll discuss more about this vision opportunity in a future post about cultivating a collaborative support system.

The truth is, our ultimate encouragement comes from knowing that God holds the purpose, not us.

Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.

Proverbs 19:21

We are vessels of His grace and power so that His greatness will be made known — not our own greatness. Yes, I would like people to think well of me. To be honest, I would like to think well of myself too. But what really matters is what God thinks of me — and how he enjoys us together, sharing life and love in the broader community. God thinks me worthy, capable, and valued in a life role I never expected. It is a role with Kingdom purpose. His reasons for placing me — and you — in this caregiving season are countless, mysterious, and prevailing.

You, too, are worthy, capable, highly valued and Kingdom-purposed for such a time as this.

In his book, The Truest Thing About You, David Lomas explains, “You can’t become who you are alone. You need people. The truest thing about you isn’t all about you. It’s about God, and it’s about others.”

There is something powerfully freeing in knowing all of this caregiving is about something far bigger than an one of us. The privilege and adventure of walking out a hard life within intimate relationship with Jesus and aligned with His purpose is deeply satisfying.

It is a wonderfully driving force behind how and why we live, love and serve each day.

“But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth.”

Exodus 9:16

RELATED: 8 Habits of Caregivers with a Robust Support System

RELATED: Six Caregiving Advocacy Tips I’m Learning All Over Again

If you’re needing extra confidence, encouragement, or tools to assist you in finding your caregiving groove, please reach out for professional help. Walk Right In Ministries is available with personalized education, consulting services, counseling, and referrals to meaningful resources. Our team collaborates with a broad network of local and national organizations dedicated to strengthening churches, communities, and families when disabilities are involved. Fill out the Interest Form or visit us at WalkRightIn.org to learn more.


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.

Kelley Chose the “Yes” of Faith

As every mom has, I have been faced with some difficult decisions. And with five children, three with special needs, one might say my faith has been flexed. Several early life experiences contributed to my learning to be a caregiver and advocate. One season in my life presented extraordinary challenge to the trust I have in my Savior. 

As the oldest child in my family, I developed a nurturing protective spirit with my siblings. I also grew up with a father who was a veterinarian. He gave me perspective of the emotions and dilemmas I would later face as an adult.

By the time I was ten years old, I was feeding and caring for five orphan dairy calves. I would arrive at the dairy with my father, and the farmer would announce that an orphan calf would cost too much to feed out. This was completely unacceptable to me. So, I would commence pleading with my father to let me care for the calf. Usually, we had a baby calf in the floorboard of my dad’s truck on the trip back to the clinic. My mom would roll her eyes and sigh, “not another one.”

My father would talk to me about anatomy, chemistry, and critical thinking. I remember watching him do exploratory surgery on his patient, working out loud through his process of elimination. This instilled a passion for research and learning. My core values expanded to include a wider view of the world and, by the age of 10, I had simultaneously experienced a spiritual awakening.

I married young at the age of 20. I had my first child a year and half later. We welcomed our second child twenty-one months after that. My husband was working at a wonderful church as a youth pastor. We owned our first home and we all enjoyed good health. I’ve come to appreciate the saying,” health is wealth.” We found out we were, unexpectedly, having another baby.

When our third child, Conley, was born, we immediately knew something was very wrong. He was not breathing. Nurses and doctors worked feverishly to save him. It was almost as if it was happening to someone else. I couldn’t believe it was happening to me. For the first time in my 24 years, I was completely helpless and terrified.

I remember finally going to meet Conley the next day. Tears fell uncontrollably as I stared at this infant with tubes and monitors. I lived at the Dallas Ronald McDonald House for three and a half months, seeing our older children on weekends. I knew my life had forever changed in the blink of an eye. 

Tears fell uncontrollably as I stared at this infant with tubes and monitors.

Conley went on to require frequent hospitalizations and over twenty-five surgeries and procedures. I wrestled hard, asking God “Why?”

I underwent a procedure to ensure our family was complete. However, God had other plans. Almost eight years later, I discovered I was pregnant with our fourth child.

About eighteen weeks into my pregnancy, we learned there were major complications. I was pressed to have an abortion. The influences and morals instilled in me could not justify an abortion. I deeply believed that God, like a maestro, was creatively composing every life event.

Much like during the nightmare of Conley’s birth, our fourth son, Camron’s, birth required the immediate work of a medical team to save his life.

For the next five months, I lived in a hotel in San Antonio across from the hospital. We had moved to Austin a month prior so Conley could attend Texas School for the Deaf. My husband lived in Austin and commuted to work in San Antonio. I stayed at a hotel in San Antonio with our older sons, to allow them to finish their school year. I vividly remember the day I found out Camron’s diagnosis and prognosis. It was grim. He was profoundly deaf and blind with a feeding tube and tracheostomy at age three weeks.

As I left the hospital and approached the bus stop, I sat on the bench watching the buses come and go. I was mapping out my plan to step in front of a bus.

As my spirit warred inside of me I finally acknowledged and grasped the promise of an inherently good God. Just like Job, God blessed the later part of Job’s life more than the first. He said, will you still love me through these circumstances? Job’s response in faith was “Yes.”

I chose “Yes” that day.

I have learned through these experiences that God is the Maestro of my life. Sometimes he calls me to rest. Other times I am called to action. In all things I understand He is the center of every life event, and only He understands the intricacies of my ultimate purpose.

God continues to connect the dots in my life, through advocacy, service, and community. One of my favorite Bible verses, encompasses both my spiritual and world view:

Work willingly at whatever you do, as though you were working for the Lord rather than for people.

Colossians 3:23

RELATED: Community Story (Camron’s Birthday)


Kelley Cagle, beautiful woman and writer

Kelley Cagle is a freelance writer and special needs advocate with a passion for mentoring young moms who have children with special needs. Kelley shares from her own experience as the parent of children with disabilities. Kelley has five sons. Two of her children have CHARGE Syndrome, a micro deletion affecting a multiple body systems and organs. Both boys are deaf-blind and on the Autism spectrum. Kelley and her husband Chris have been married over 26 years and live in Texas with their two youngest boys.

Kelley’s husband, Chris, shares a Community Story celebrating life, faith and fellowship.