Theme: Caregiver self-care

It had been many years, 23 to be exact, since the last time I navigated life with a toddler. While friends of mine have started celebrating their entrance into grandparenthood, I had a remarkable occurrence of a surprise pregnancy instead. At age 45, while already the mother to a 22-year-old daughter with medical complexity and developmental needs, I was told the shocking news that I would be the parent to a daughter once again. Advanced maternal age hurdles were cleared, some more tenuous than others, but lo and behold, in the winter of 2021, a newborn arrived. Those first two years with our daughter Nika were filled with daily pinch me moments. We marveled at the mere existence of this new person developing before us. Highchairs, car seats, onesies and child rearing technological offerings, unheard of in the late 1990s, all took hold within our home. Milestones were easily met. We were on absolute cloud nine.

Then, toddlerhood entered. The temper tantrums, safety concerns and juggling of a very mobile little one coupled with the noticeable decline of her older sister became a heavier weight to carry. In this newest journey with toddlerhood, I started to wonder if my age (now 50) or perhaps the cumulative effects of decades of diaper changes, now for two individuals instead of just one, had created mental exhaustion.

I started to rescind from social interactions due to overwhelm. Most notable was my inability to clearly answer the question; how can I help?  when offered by supportive friends. I understood their generosity and genuine desire to be of assistance, but I could not identify my own needs.  My internal dialogue went something like this – Do I need someone to tend to the house or tend to my older daughter with special needs?  Would it help my mental state if I found purpose by going back to work?  Should my toddler attend preschool full-time while I remain home to catch my breath? Maybe I could simply “do better” at streamlining life and its collective tasks. In this past year, the most common thought I find myself thinking in response to outside offers of help is, “stop making my life harder”.

Small minor things like my husband asking if I know where his shoes are, my toddler insisting on Mommy doing something over anyone else, administrative bottle necks when trying to get a mere prescription refilled, are all examples of times when mental overwhelm takes hold. This wasn’t always the case. It’s only during this past year I’ve noticed this shift within my normal state of homeostasis.

This phenomenon self-propelled; it is now the case that when well-meaning friends suggest the planning of a girls’ outing, when I place unrealistic expectations on myself to see extended family members, or even just grabbing a quick dinner out with my husband ALL compound daily stressors. Each time one of these opportunities arises, I feel the quiet constraint of a belt being cinched, hoping to reach that next hole – wanting to please others, wanting to find balance, wanting to lead a normal adult life. Meanwhile, I feel a house of cards crashing down from all the tasks waiting in the wings.

Recently, I decided to investigate what research exists on the tolls taxed upon caregivers of adult children with special needs. I postulate that these consecutive 27 years, totaling more than half of my own lifespan, are the root cause of my mental decline. It’s not so much that the individual tasks of caring for Sasha, who suffers from the neurologically degenerative Sanfilippo Syndrome, are my undoing, but rather the collective and ongoing nature of those tasks.

Indeed, a useful study conducted by the Polibienestar Research Institute, Universitat de Valencia and Biomedical Data Science Lab – ITACA Institute, Universitat Politecnica de Valencia, found that “the aging of family caregivers has been correlated with decreasing caregiving efficiency”. Perhaps my initial read was accurate. While my commitment to caregiving itself has never waned, my engagement with all things peripheral from it certainly has.

A little more digging had me also reading a National Institute of Health study illuminating Carol Ryff’s 6 domains for consideration towards psychological wellbeing: (1) Self-Acceptance, (2) Positive Relations with Others, (3) Autonomy, (4) Environmental Mastery, (5) Purpose in Life, and (6) Personal Growth.  Immediately, many of these categories lit up my brain like a PET scan and caused me to reflect on the evolution of my life.

Sasha, who for so many years ran wild, laughed with mischief, fed herself and loved riding in the car, windows open, music blaring, is now so deeply changed. Today, Sasha is wheelchair bound, trembling while eating, crying out in the night longing for assistance to be repositioned. She needs diapering at the most inconvenient times, which is every instance that we’re headed out our front door on time, or in a public setting with a precarious wheelchair bathroom. As her eating and drinking rates have significantly slowed and require more of my time, the list of administrative and household to-do’s sits idly waiting. Her care has taxed my autonomy, my environmental mastery, my self-acceptance and my purpose in life. She has changed my trajectory. This reality is undeniable.

Sasha’s changes serve as a reminder that what was once helpful to me – like offers from others to help –  may no longer be as useful. I live in a suspended state knowing that what would be most useful to me now is something that will never return: a mobile Sasha – a robust, strong, speed eating, agile Sasha. Setting that aside, even when I can identify resources to bolster control over my new environmental landscape –  those which might provide greater autonomy or tap into my purpose and aid with self-acceptance –  I find myself unable to act. My continual state of overwhelm has made it difficult to determine a beneficial resource.

At one point in time finding someone to help with housework or securing a care provider with a flexible schedule were the most meaningful forms of assistance. Blogging and journaling aided in reflection and self-acceptance and rippled into enhanced positive relations with others. Working outside the home provided purpose in life and personal growth. But in this current iteration of life, those tasks simply mean more oversight, which means more areas for me to manage.

In recent years, I have also identified that a quiet house provides the biggest boost in bandwidth. When Sasha’s school years came to an end, so did a quiet home. While we are very fortunate to have nursing staff come into the home to care for Sasha, Sasha and her sister  (along with an additional individual) are now almost always home and a quiet house nowhere to be seen. This suggests to me that a certain bandwidth must be present to even pursue supportive tools or resources.

How can I help? is a well-meaning inquiry. But this inquiry can often stunt a response from the caregiver who is so often in that state of overwhelm. It asks us to think of a solution when we are already drowning. Thinking about Carol Ryftt’s 6 domains, it occurred to me that those offering support should consider them as well. For example, when asking a friend who is caring for an individual with special needs to go on a girl’s weekend, it might be helpful to first ask yourself  – does that friend HAVE the mastery over their environment, or the autonomy to make such a plan?  Or upon deeper reflection, you might see that the caregiver is consumed with domains 5 and 6 and understand that simply going out to dinner may feel like a pulling away from precious time needed to pursue their own self-care or purpose creating activities.

Caregivers often struggle with how their lives feel dictated by their circumstances. In my case, travel, working outside of the home and the pursuit of additional higher education, all intrinsically meaningful to me, also have all been put on an indefinite hold. I greatly miss engaging in a community aligned with my outside interests and meeting a greater sense of purpose. Self-acceptance ebbs and flows most days, which naturally impacts the final domain, positive relations with others. If an individual does not feel like they are flourishing, a rippling effect into other relationships can be expected.

All this is to say, caregivers feel tremendous strain. There are many days when the provision of basic life necessities are the only realistic activities to complete. I would like to offer this suggestion to those wanting to support parents like me. Offer a tangible, finite gesture of assistance. Rather than making a broad offer – Can I bring you dinner? Clarify it – “I can bring dinner over either on Tuesday, Thursday or Sunday this week” or “I can take the girls for a Sunday drive this month so that you can quietly tackle things around the house”. These more directive offers remove the pressure felt by the caregiver to make yet another decision.

Supporting a friend or family member like me is truly a subjective task for both parties involved, the supporter and the supported. It’s important to know that the caregiver role is an ever-changing landscape. Supporting loved ones navigating this life requires some reflection and finesse by both parties. In the end, and I say this delicately, trying not to “make that person’s life harder” may be a helpful mantra to start with when you are considering how to support caregivers.

References:

Namkung, E. H., Greenberg, J. S., Mailick, M. R., & Floyd, F. J. (2018). Lifelong parenting of adults with developmental disabilities: Growth trends over 20 years in midlife and later life. American Journal on Intellectual and Developmental Disabilities, 123(3), 228–240. https://doi.org/10.1352/1944-7558-123.3.228

https://www.sciencedirect.com/science/article/abs/pii/S0277953624011031

Joanne Huff comes to Courageous Parents Network as a long time follower and parent enthusiast of the organization. As the Mother of two girls, the oldest of whom has the rare disease MPS IIIA/Sanfilippo Syndrome, Joanne has benefited tremendously from the intimate parent interviews and candid, vulnerable story sharing throughout numerous thought provoking blog posts.  As her daughter’s activities and lifestyle started to slow down with disease progression, CPN became a larger anchor in times of uncertainty and unrest. It is through this lens that Joanne hopes to share experiences and insights via the CPN blog.

Joanne completed nursing school after her daughter’s diagnosis, receiving her Bachelors of Science in Nursing from Plymouth State University, Plymouth NH.  She enjoyed community liaison work with home care providers of adults with special needs up until her own daughter’s care became increasingly more involved. In addition to serving on the Boards of New England Regional Genetics Group (NERGG) and Adaptive Sports Partners through 2024, she has found great purpose in volunteer work advocating for policy improvements and change in Washington DC with the National MPS Society.  In her free time, Joanne seeks balance and refuge with yoga, hiking and performing as an ensemble Soprano vocalist with the Pemigewasset Choral Society. When not blogging for CPN, Joanne enjoys sharing offerings on her personal Blog Folding Origami for God.  She resides in Bow New Hampshire with her two daughters, Sasha and Nika, her husband Mike and her yellow lab Suki.

Theme: Caregiver self-care

The mom of a medically complex boy who was born very prematurely itemizes the types of in-patient support she thinks parents need to feel equipped to cope – mental health support, parking compensation, family meetings, and direction to resources available in the community.

Theme: Caregiver self-care

Our daughter was born with a rare genetic metabolic disease called Glycogen Storage Disease Type 1B. Her body is unable to access the stored form of glucose (called glycogen) from the liver. The current treatment for her disease is scheduled doses of cornstarch in combination with a strict diet which limits carbohydrates and restricts sugar. However, there is no window into the body’s metabolic needs. Metabolic demand (need for glucose) can increase with illness, activity, hormonal changes…anything really and so it is very difficult to control our daughter’s blood sugar with the current treatment option.

Living with Glycogen Storage Disease, Type 1B is most certainly “living a chronic crisis existence”. We live hour to hour, cornstarch dose to cornstarch dose. A missed dose of corn starch could lead to hypoglycemia, seizures and even death. Our daughter’s life depends on these scheduled doses of cornstarch delivered EVERY 2-4 hours with no room flexibility in the schedule. To be effective meals and doses need to be delivered at the same time everyday – this treatment demands perfection.

The treatment regimen affects so much of our lives. I had to transition my career from a full time medical professional to a per diem role to accommodate the demand of my daughter’s health needs. This puts an added burden on my husband to provide. Certain activities can be very taxing on my daughter’s body, limiting what she is able to participate in. These limitations can be hard to explain to a young child working to fit in with her peers. The demanding treatment schedule limits our families capacity to travel or to only do so with lots of supplies at hand and always with the risk that we will be too far from doctors who understand her rare condition. But perhaps the most significant impact is sleep deprivation which my husband and I as well as our daughter suffer from. Our lack of sleep contributes to our anxiety levels and our sense that we are always living in a chronic crisis state.

Whenever our daughter is ill, I experience heightened anxiety. I know I need to remain in a hyper-vigilant state while she is ill to keep her safe. A simple virus for our daughter could lead to a hospitalization. I work in healthcare and I have always felt calm and at ease in hospitals. Trauma associated with finding “good” care for our daughter and our experience in emergency situations has led me to feel the opposite. GSD is incredibly rare and even at the most prestigious hospitals there is a knowledge deficit on how to care for a GSD patient. When a GSD patient is unable to drink or eat their cornstarch, they need emergent management with IV dextrose for survival.  If a patient’s IV malfunctions while receiving dextrose they are at risk for severe hypoglycemia, seizures, and death. Patients and caregivers must remain hyper-vigilant to ensure they are receiving the correct treatment to survive.

I recently found this quote that described perfectly what is happening to members of my family.

“It is difficult to move through the stress cycle because there is constant stress and crisis. The human body is meant to handle an acute challenge. Your adrenaline kicks in and then resolves back to baseline once the stressor or situation passes. With chronic crisis the crisis lingers. Cortisol kicks in appropriately at first and then stays elevated. Without meaningful action and intentional cognitive practices, the chronic stress reaction becomes toxic to your mental and physical well-being.”

I feel I cannot discuss the idea of living a “chronic crisis existence” without discussing grief. All caregivers experience grief in varying degrees throughout their rare disease journey.  I grieve that her body does not have the capability to regulate blood sugar and the limitations this disease puts on her body. I grieve that her brain is being withheld the vital glucose it needs to function. I grieve the life I imagined for my child and the impact this disease has on our day to day lives. I think about her future and the demands this will put on her as she gets older and must manage this disease as an adult. I grieve for all the other patients and families living with GSD and the relentless demand it places on us all.

As a rare disease parent, you do what you must do because there is no other choice. I must make a conscious effort to tell myself I am doing the best I can with the treatment that is available. I have made a lot of changes in my life over the past year to prioritize my own mental health. I highly value connection and community and have been able to find some comfort within the GSD 1B community as well as the rare disease space. GSD 1B patients and adults face their own mental health challenges, with every age and stage there is something new to manage – a never ending cycle. My hope is by sharing my own vulnerability and mental health struggles it will lead to connection and help others.

Theme: Caregiver self-care

About fifteen years ago, one of my worst practical fears came to pass when I received a phone call that my young children had lost their employee-sponsored healthcare insurance. Today we have the Affordable Care Act, but back in 2008, there was no such thing. As a parent of a child with a serious, multi-systemic genetic disease called ASMD, the implications were overwhelming. Earning a part-time lecturer’s salary, how could I possibly manage my son’s medical expenses? 

I became obsessive about this new uninsured status. Having received bills for $750 for just one ten-minute specialist’s visit or upwards of $5,000 for a trip to the emergency room, I had no idea how I could possibly pay for the healthcare costs I would be facing. What were my options?  Declare bankruptcy? Beg for family loans? Rack up massive credit card debt?  Quit my job and declare ourselves medically indigent?  And forget about luxuries like vacations. Expendable income? Nope. Bizarre ideas about bubble-wrapping my son to keep him from hurting himself began occupying valuable space in my brain. How on Earth will we manage? I began ruminating incessantly. 

After a few months of this mental torture, I realized something had to change. Life couldn’t go on like this. Then an idea came to me. Self-care. Yes. . . I am going to get myself some of this “self-care” I have been hearing so much about. Back then, the term was known, but not in common usage like it is now. 

I thought back to my childhood when a neighbor surprised me with a candle-making kit. I recalled the delight I took in making a tri-colored, heart-shaped sand candle that I can still see in my mind’s eye. I wanted to relive those joyful, excited, and proud feelings. So I decided, Yes, that’s it. I am going to make candles for my self-care.  

Being sensitive to strong scents, I decided that all-natural beeswax was the way to go. Living in an area where beehives are a mainstay for the almond orchards that require commercial pollination, I easily found a bee keeper who sold me twenty pounds of the most beautiful and naturally fragrant, opaque golden-yellow beeswax you’ve ever seen. “Take a whiff of that!” the beekeeper said, holding open the bag for me. Indeed, the beeswax smelled heavenly of honey.

Sometime later on a Sunday, after finding some inexpensive candle molds from Craigslist and buying some wicks from the craft store, I decided the time was ripe for my candle making self-care experience. 

First though, I needed to heat up my used wax melting pot. It had some dark pinkish-red, artificial bayberry-smelling wax left in it that looked suspiciously like the remnants of someone’s Christmas candle project. No, that wax would definitely contaminate my beautiful, pure, golden beeswax. So I set the pot on the stove and reasoned, Okay, I’ll let this wax melt so I can clean it out. Then I’ll begin.

But after I set my pot on the stove, my mind drifted away from candles, and wandered back towards my insurance dilemma. I’m going to hop on the Internet while this heats up, maybe look around for some options, I reasoned. 

Okay, so now if you’re thinking, what a terrible idea, you’d be right. Anyway, I sat down at the computer, and then I felt myself being drawn into a surreal cyberspace. I began clicking around, website after website, moving ever deeper into that tunnel of despair when suddenly I was startled by a loud Bang! Pop! And a split-second later, a shrill and frantic beep beep beep rang from smoke alarms throughout the house. I jumped back into my physical body, sprang out of the chair and dashed into the kitchen. It was on fire! The candle wax had ignited. The microwave, the stovetop, and the edge of the cabinets were awash in angry, bright orange flames. 

In the fight or flight circumstances, I froze. But I managed to grab the phone and dial 911. 

“911, what’s your emergency?” the woman who answered stated. In my frozen state, the best I could manage was to blurt out in a breathy, monotone voice, “Fire. Fire.” 

“Get everyone out of the house!” the operator ordered. I can’t quite remember what was said next. But then somehow, in the course of nano-seconds, I re-engaged my cognition and had the following conversation in my head.

Kara, get ahold of yourself. You won a trophy in the third grade for drawing the best fire-prevention poster in the whole school. The fire fighters came to award it to you. You can do something about this fire.

And so I reached into a cupboard (which was not aflame), grabbed an almost full box of baking soda, and hurled the contents at the fire. That managed to douse about 75% of the flames. Then I took a breath, and I huffed and I puffed until I blew the rest of them out.

Just then, the sound of sirens grew louder as two fire engines and the fire chief’s truck all pulled up to my house, right along with all the neighbors from the cul-de-sac who lined up along the sidewalk to watch, one with a video camera who slowly panned around to record the action. As icing on the cake, right at that moment, my parents and children returned from a Sunday drive, and my oldest son Evren began crying that all of his toys were going to burn up. By then I knew the danger had passed, so I just rolled my eyes, tipped my head back, and shook my head ruefully. No, this definitely was not the self-care experience I envisioned. 

In the weeks following, my kitchen received a mini-makeover with a new range and microwave, professionally cleaned cabinets, and fantastic new paint with buttercup-yellow walls and a Swiss coffee ceiling. The insurance estimator gifted me a new fire extinguisher.  I also found two good health insurance plans that helped cover my costs quite well until I eventually secured employer-funded insurance.  In fact, I learned a lot from the candle-making disaster, and here’s what I’d like to share with you.

I did not recognize and think my way out of a cognitive distortion known as catastrophizing.

Catastrophizing, derived from the word catastrophe, is a destructive thinking process that short circuits our hope and joy. Catastrophizing is when you focus your thoughts and energy on the worst possible outcomes that could possibly happen. The fact is, most of the time, the catastrophic events do not become realities. 

Now, I understand that when you are the parent of a child with a serious illness, there is something called anticipatory grief. I also have firsthand experiences with baselines that change for the worse and the realities of a genetic disease that is progressive. But catastrophizing is about a misguided choice, not a normal grieving process. My lesson was to learn to stop catastrophizing and reframe my circumstances in a more positive light.  I found inspiration in a line from a song which I turned into a mantra. Now, when I see myself begin to ruminate, I tell myself, this is the life that my son and I have been given. Let us rejoice and be glad in it.  I no longer waste away hours worrying about problems that do not exist.

I needed a different type of self-care. 

Some are unaware that self-care actually has four components, physical, emotional, psychological, and spiritual. At the same time, society and the popular media teach us that we find freedom through external sources, especially with material goods. But beware of the limits of this approach to self-care. Candles are (usually) fun to make and nice to have. But candles weren’t what I needed. I needed to embrace my spirituality to encourage me and help me stop obsessing about things that were out of my control, including biblical verses like Joshua 1:9 which says, “Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”

Whether you describe yourself as religious, spiritually-minded, agnostic, or atheist, I hold that we are all spiritual beings and need to attend to our spiritual self-care. You can adapt ideas from any faith tradition or spiritual healer or author that resonate with you. Spiritual care is accessible universally and without cost.

I need the opportunity to leave the house for a few days.

Over time, I came to understand how critical it was to be able to leave the home for at least a few days every year. At home, we are surrounded by sights, sounds, and smells that call our stressors to mind. I have learned that after about two days away, I began to emotionally decompress and begin rebuilding my internal resources. 

A word of encouragement to those who are struggling financially or who find it difficult to navigate travel with a medically fragile or otherwise high-needs child. You, too, may benefit from a break from the home. For me, a self-care vacation did not necessitate leaving my children behind. Also, you can network with friends and family to help you, and perhaps take a shorter trip with simpler plans for your destination and activities. I have come to understand that for me, that leaving the home periodically as a form of self-care is a necessity, not a luxury.

When you do embark on a self-care experience, my best advice to you is to give yourself full permission to stay present in the moment, and to allow your heart and mind to be unburdened so that your self-care journey is a rewarding one, certainly without any fire engines involved.

Theme: Caregiver self-care

For so many parents and caregivers caring for children living with illness and medical complexity, the stress and burden of caregiving can be overwhelming. Practicing self-compassion can help us shift out of survival mode, allowing us to better deal with challenges and grow our emotional resilience. Within this guide, you will find some great tips on the benefits of self-compassion and ways to practice self-compassion which can enhance your well-being and capacity to be the caregiver.

Theme: Caregiver self-care

Para muchos padres y cuidadores que atienden a niños con enfermedades y complejidades médicas, el estrés y la carga de los cuidados pueden ser abrumadores. Practicar la autocompasión puede ayudarnos a salir del modo de supervivencia, permitiéndonos afrontar mejor los retos y aumentar nuestra resiliencia emocional.

Theme: Caregiver self-care

Parents of a 21-year-old son with progressive medical complexity describe how accustomed they have become to chronic stress, which isn’t good. Mom notes that stress reduction for a parent is a very individual thing. For her, “All I want to do is sleep for a week.” They describe details of what they have to arrange to go on a date, or on vacation, the extra hurdles.

Theme: Caregiver self-care

Being the parent or caregiver of a child with a medical condition can be very stressful. Some medical experiences you have with your child may be traumatic. As many as 1 in 5 adults has a mental health concern like depression, anxiety, or posttraumatic stress disorder. The chance that you will experience a mental health concern increases when you have a child with a medical condition. It can be hard to find the time or resources to take care of your mental health, but taking care of yourself is important for both your well-being and your child’s.

A therapist can help you manage stress, worries, sadness, anger, grief, and more. Therapists are licensed mental health professionals who can listen to your concerns and help you solve problems. Therapists can teach you strategies that help you manage difficult emotions, thoughts, and memories. Therapists can also help you to improve communication with your loved ones or work through problems in your relationships. The steps below can help you find a therapist.

Theme: Caregiver self-care

For so many parents caring for children living with illness and medical complexity, the stress and burden of caregiving can be overwhelming. How can we build our ability to deal with the stressors when so many are outside of our control? Self-Compassion is one technique, with three components. It can help you get through survival mode with greater ease. Kendra Wilde, a parent and creator of Wild Peace for Parents and the A Little Easier podcast, talks about what research has shown about the power of self-compassion and suggest small actions you can incorporate into your day.

Theme: Caregiver self-care

Before my husband and I were parents, we were entrepreneurs co-leading a start-up. Little did we know then, a key strategy we were using in growing our business would later serve as a lifeboat for us as family caregivers running an in-home ICU to care for our son’s medical complexities.

In vs On

It begins with differentiating between what it means to work in your business and what it means to work on your business. Working in your business refers to all of the jobs, tasks, and meetings required to deliver your product or service. Working on your business is about assessing and improving the systems, routines, mindsets, workflow rhythms and environments that allow you (or your staff) to work in your business. 

Helicopter View

As business owners my husband and I engaged in a practice of setting aside time each month to step away from the office to work on our business. We would tackle a specific operational problem hindering the function and/or growth of our business. It felt like taking a helicopter ride, zooming out to look at the larger landscape, to assess how our business was functioning. 

Together we identified one problem, what made it a problem and why change was a priority. Then we expressed our wishes for how it could be different, brainstormed possible solutions, and made a decision on how to approach this change. We called these meetings Remodel Time because the result was a remodel of how our business functioned. This improved efficiency and how work happened in our business.

Providing Care without a Systems Plan

When our son Levi was born with severe HIE, we were immediately immersed into a hospital-based NICU-life with all of its protocols and 24/7 rhythms. At two weeks of age we began the steep learning curve of how to care for our son in preparation for going home. It was a thrilling and terrifying moment to bring Levi home at three weeks old. Figuring out how to be a NICU staff of two was overwhelming. 

Each day we faced the sustained uncertainty of if Levi would live to see the next day. Learning the what of caring for Levi was more essential than the logistics and systems of how we were doing it. Oxygen tanks landed by the front door because it was easy for the delivery person.  Medications and medical supplies haphazardly found their place in the first available spot. 

Even as days became weeks and months, the high uncertainty of tomorrow prevented us from comprehending the need for a systems plan. When Levi caught his first pneumonia we added more medical equipment, medications, and supplies. When he began in-home therapies and early intervention education we added adapted toys, chairs, mats and supplies. Layer by layer, we developed medical care plans, therapy plans, and education plans. These plans included detailed definitions of what it meant to work in the business of caring for Levi. None of these plans addressed the operational aspects of caring for Levi. For that we had no plan.

Remodel Time becomes our Lifeboat

Levi was nearly two years old before we recognized we were living without a systems plan. The relentless 24/7 intensity of caring for him absorbed our total focus. It wasn’t until we began to have night nursing staff (long after having daytime PCAs) that we had to more fully teach our system of care to someone who could care for Levi while we were away (aka asleep). 

With great kindness our nurses asked questions and gave insights on different ways we could improve our systems.These seemingly small changes radically improved our daily experience as caregivers. We felt we could begin to breathe more deeply. 

This sparked the memory of our Remodel Time business meetings and we began to experiment with how to apply it to caring for Levi. As before, we focused on one problem per meeting with a goal of identifying a specific actionable change we could make with the resources we had available to us. 

Here are three tangible examples of changes that came from our monthly Remodel Time meetings. 

• We addressed the traffic jam of clean and dirty dishes, syringes, and feeding pump bags all hovering around the kitchen sink. We moved the medical items to the nearby bathroom sink. This generated several improvements including reducing the traffic flow into the kitchen, making meal prep and clean up easier.
• We recognized the furniture in our living room (now Levi’s everything room) did not have adequate storage for his medical, therapeutic, and educational items. Caregivers were spending too much time searching for what they needed which left Levi waiting.  We developed a wish list and reached out to a local furniture store that had a program for donating their floor samples to local nonprofits. The store connected us with a nonprofit and our wish list was delivered two months later. Both Levi and his caregivers benefited from this change.
• Levi’s deafblindness impacted how he experienced the world and communicated with others. As he grew his need for his caregivers to understand this grew. Picking him up for a hug could be wonderful or anxiety-producing, depending on how this was communicated to him ahead of time. Increased anxiety easily cascaded into other emotional and physical challenges for Levi. We planned a training for all caregivers to learn about deafblindness and specific strategies for communicating with Levi. This radically improved relationships all around and opened the door for caregivers to share their discoveries as Levi grew.

With each remodel change we made, even the seemingly smallest ones, we felt our burnout decrease and our resiliency grow. We witnessed this also happening within the whole care team. We could breathe deeper and think more clearly. This improved our collective quality of care for Levi and our ability to foresee the next opportunity for change.

Surprisingly, in my marriage Remodel Time also served to tend to some of the grief that comes from having your life broken into “before Levi” and “with Levi” experiences. By bringing the Remodel Time practice into our “with Levi” life, we learned our “before” life wasn’t a waste or an alter-reality we would never return to. Rather, it set the stage for us to love and care for Levi to the best of our abilities right now. 

In so many ways Remodel Time became an essential lifeboat in our experience as family caregivers. The relentlessness of running an in-home ICU didn’t change but our ability to live and thrive within it did.

Levi’s mom, Dannell Shu, has served as a parent advocate within pediatric palliative and hospice care since 2014. As a writer, speaker, educator, and thought leader she brings forth insights gained from lived-experience and the stories of children in need of palliative care. She serves as a Family Caregiver on the Pediatric Palliative Care National Task Force. To learn more about her advocacy visit MamaShu.org. To learn about the resources she creates for bereaved families visit RedBirdTime.com

Theme: Caregiver self-care

A mom whose daughter spent her 5-months in the NICU acknowledges how helpless and useless parents can feel and how hard on themselves they can be. “I went into a negative headspace. I pretty much talked myself out of being a mom.”

Theme: Caregiver self-care

A NICU mom talks about her weekly schedule while her daughter was in the hospital, learning that she needed to make time to take care of herself, and finding companionship in her nursing team.