Caregiver Stress and Burnout

professional caregiver burnout

If caregiver stress and burnout wasn’t a common condition prior to the Coronavirus shutdown of 2020, it certainly is now. During the height of the pandemic, people found themselves caring for their children (typical and with special needs), elderly parents, and spouses 24/7. 

Caregiver stress and burnout

Prior to this life changing event, caregivers did not realize what a blessing school and daycare were, in terms of lifting some of the responsibilities and stressors for a few hours.  During the shutdown in 2020, caregivers flocked to social media, and were incensed that they had to be the ones to teach their children at home, or provide circle time and socialization all day.  

As a therapist and parent of grown daughters, I was frustrated by the comments from these angry parents.  I wanted to exclaim, “this is YOUR child!”  YOUR responsibility!  I understand the toll caring for others takes on a person, however I never considered teachers to be a requirement, or a given; they were privileges and gifts. 

Instead of unleashing fury about having to take care of your loved ones, let’s rewrite the narrative.  How about, “this is hard, day after day. Their teachers must be miracle workers. Or, “I can’t understand how their daycare teachers manage this so well,  I’m exhausted.”

caregiver stress and burnout

No matter what the narrative is or was, the end result is caregiver stress and burnout. Ron Ingbur, JD writes, “caregiver stress syndrome is a condition characterized by physical, mental and emotional exhaustion. It typically results from a person neglecting their own physical and emotional health because they are focused on caring for an ill, injured or disabled loved one”

Check out this article on caregiver stress. People were (and still are) blurring the boundaries between their roles, trying to do too much, not wanting to ask for help, and attempting to be perfect in this imperfect world.

The OT toolbox has a great post on family wellness and a research article on wellness that are good resources to have.

Professional Caregiver Burnout

Caregiver burnout and stress is not limited to families. Healthcare workers, daycare attendants, teachers, therapists, and many more adults take on the role of caregiver, often neglecting their own needs. 

Professional caregiver burnout is a real thing.

As an Occupational Therapist (and a mom and wife)  I hit a wall right before the pandemic took over. I tried changing jobs, reducing hours, decreasing my caseload, none of these relieved my symptoms.  The pandemic was a blessing of sorts for me. 

While it was not 100% solitude, (my husband and teenage stepson still roamed the house looking for food) it was eye opening to realize the change that was happening in my mental and physical health, by having a few months off of work to breathe and reflect.

The lesson I learned, (too late) was I should have taken better care of myself and my needs, before hitting a wall I could not recover from.  Check out these self-care strategies for therapists.

A self-reflection journal for therapists can be a great tool to add to your own toolbox when battling professional caregiver burnout.

common signs of caregiver stress and burnout

Though everyone differs, the common signs of caregiver stress syndrome are:

  • Changes in appetite, weight, or both
  • Depression – feeling blue, hopeless, irritable, helpless, loss of interest in activities
  • Withdrawal from friends and family – these are just one more added stressor
  • Changes in sleep patterns – either sleeping too long due to exhaustion and burnout, or not getting enough sleep due to responsibilities and stress
  • Getting sick more often – not only are caregivers exposed to more illness, their own immune systems are often compromised by their exhaustion and stress
  • Negative thoughts of wanting to escape, hurt yourself, or the person you are caring for
  • Emotional and physical exhaustion
  • Anxiety – intrusive thoughts, obsessions, perseveration on beliefs and feelings

Caregivers find they snap at the ones they love, have nothing left to give when they come home, can not spread their attention across everyone in the family, or constantly feel they are failing.  

caregiver burnout quiz

Think you might have caregiver burnout? 

In addition to the emotional toll caregiving places on a person, there are physical manifestations as well.  According to Igbur, 45% of caregivers reported chronic and possibly life threatening conditions, 58% of respondents said their eating habits were not the same as before, and 72% reported they did not go to the doctor as often as they should.  

What about the little things?  I see caregivers who have not had a hair cut, been to the dentist, or bought new clothes forever.  One of my patient’s moms was wearing old shoes that were duct taped together, using a computer missing several keys (she is a writer, so this is kind of critical), because she put everyone else’s needs so far above her own.  

Once you (or a loved one) recognize the symptoms or caregiver burnout, it is time to take action.  Caregivers who feel they need to do it all, (I was one of them) are the most reluctant to get help.  It is important for these caregivers to realize that they are not going to be of any help to anyone if they are lying in a hospital bed, dead, or having a nervous breakdown.  

how to alleviate caregiver stress and burnout

  • The first step is to take a break.  While a two week vacation in the Bahamas is just what everyone needs, this is not always possible.  Sometimes a break means twenty minutes of alone time in the bath, or a stroll through Target without anyone asking for anything.  Seek assistance from friends, family members, neighbors, church members, groups, organizations, or professional respite care agencies. Caregivers do not need to leave the house while their respite carer, or other helper is in their home.  They can take a nap, do some gardening, lie in the sun, watch Netflix, or whatever they find relaxing. Some of these respite care resources are voluntary, grant funded, or paid agencies.
  • Next, lighten the load.  What tasks or responsibilities do you have that someone else could easily do?  Maybe someone else can clean the house, do the grocery shopping, pick up the other kids at school, take grandma for a stroll, or deliver meals.  Don’t be too proud to share the workload.
  • If you are working outside of the home, talk to your employer about your options.  Maybe you can flex your hours to include a little downtime, take family medical leave if necessary, or cut down work hours.  People are often afraid to ask their bosses for fear of being laid off. To reiterate, if you are so overworked you end up in the hospital, or deceased, your job won’t matter.
  • Once a little time has been freed, take care of yourself. Go to the doctor, visit the dentist, talk to a therapist, join a support group, reconnect with friends, get your hair colored, get some rest, exercise, meditate, color, take a bath, or whatever you have been neglecting while caring for others.

Whether you are a parent, child, healthcare worker, teacher, spouse, or other caregiver, make sure your entire tribe knows what responsibilities you have.  Let your child’s OT know you only have about 15 minutes to spare each day to work on their home program. Talk to their teacher about what amount of homework you and your child can get done each week. Have a discussion with your coworkers about dividing the workload more evenly, and speak to your friends and family so they understand what you should/not take on, and how they can help.  

control what you can

In a caregiver role, there are many things out of your control.  As a teacher you may not be able to control the number of students in your class, but you could streamline your day to be more efficient, or get a housekeeper and a cook to lessen the load when you get home.  You may not be able to decrease your hours at work, but you can make the most of your lunch time by going outside for a walk, eating a yummy snack, taking a nap, or catching up with a friend. Parents may not be able to send their children to school or afford daycare, but they may be able to swap babysitting hours with a friend, join a meal sharing group, or create a playgroup, where there is emotional support as a group while the children play.

Caregiver stress and burnout is huge.  Not just because of the Coronavirus. Adults are living longer, possibly needing more care from their children. There is an increase of children who have special needs requiring extra care, therapies, and appointments.  People are taking on multiple rolesk while juggling a busy job and household. Overscheduling and committing are becoming the norm.

The hardest step to alleviating caregiver stress and burnout

While the first step is recognizing the problem, the HARDEST step is doing something about it. It takes a lot of swallowing your pride, compromising, and feeling the agony of defeat, to ask for help.  Caregivers will find it tough to watch someone clean their house while they take a bubble bath or rest.  Some with find it even more difficult to let a respite care worker take care of their loved one, while they head out to the movies.

This article has some great resources and websites to learn about and combat caregiver stress.

You will thank yourself later.  While I love the job I landed in, I can’t help but wonder what path my career might have taken if I had recognized the burnout sooner, and done something about it. Now that my girls are grown, I constantly reflect on my parenting with doubt and angst, thinking I might have been more patient if I had taken that nap.  

Victoria Wood, OTR/L

Victoria Wood

Victoria Wood, OTR/L has been providing Occupational Therapy treatment in pediatrics for more than 25 years. She has practiced in hospital settings (inpatient, outpatient, NICU, PICU), school systems, and outpatient clinics in several states. She has treated hundreds of children with various sensory processing dysfunction in the areas of behavior, gross/fine motor skills, social skills and self-care. Ms. Wood has also been a featured speaker at seminars, webinars, and school staff development training. She is the author of Seeing your Home and Community with Sensory Eyes.

*The term, “learner” is used throughout this post for readability, however this information is relevant for students, patients, clients, children of all ages and stages or whomever could benefit from these resources. The term “they” is used instead of he/she to be inclusive.

Potty Training Seats for Special Needs

Potty training seats for potty training special needs kids

Occupational therapy professionals work with clients of all ages and abilities on toileting and hygiene. That’s why this resource on special needs toilet training seats is so important. In therapy sessions, a skilled assessment of the whole individual can indicate a need for postural modifications to support motor skill needs. When it comes to potty training and toileting in general, there is a LOT of information out there. And, if you ask around for suggestions for the best potty training seats, you will probably get a variety of answers.

Some of these seats will help with independent perineal care, too because of the positioning and stability added for balance. Potty training supports like handrails, grab bars, and guards can help with the hygiene aspect of toileting.

Special Needs Toilet Training Seats

It can be overwhelming to weed through all of the potty seats out there on the market and in the local box store toddler aisle. The difficulty compounds when you consider potty training with special needs children.

Today, I wanted to pull together a list of kids toilet seats out there on the market that are perfect for special needs kids, as well as typically developing kids. Why? Because so often, a few simple changes with positioning, balance, and stability can be the tool to help kids feel more comfortable, confident during the toileting process.

Adding a stable support at the feet, back, or bottom can help a child to relax so they can toilet.

These potty training chairs help address the underlying needs that kids might struggle with when it comes to potty training. These potty training seats and supports can be the tools needed to address a variety of underlying needs when it comes to getting started with potty training.

Here’s the thing: it can be difficult to make suggestions or come up with a comprehensive list that covers ALL of the special needs out there. (That’s where your occupational therapy evaluation or equipment analysis will come into play!)

BUT, I can definitely address some of the more common potty training seats out on the market and address the underlying areas that they can address and hopefully target a best fit.

These recommendations for potty training seats are guided by development and great for kids of all needs. Use these potty training seats as suggestions when starting potty training for toddlers or preschoolers.

Potty Training Seats are Not One-Size Fits All!

Let’s face it. There is no one-size-fits-all approach when it comes to potty training. Because of the vast differences in in kids development, interests, motivation, physical or special needs, potty training can be a challenge to know where to start.

This list is hopefully a start for addressing some of the areas kids need for successful potty training.

Amazon affiliate links are included below.

Portable Seat– This type of seat is great for kids who need a smaller opening on the toilet. Kids of all needs benefit from a larger seat area when first potty training. This one is nice because it can be carried from place to place when on the go outside of the home. Just fold it up and place in it’s carrying bag. Using a portable seat can make it easy to add interests when beginning potty training. Add interests such as special toys and items to make sitting motivating.

Squatty Potty– The squatty potty is a helpful way to provide a more stable base of support while sitting on the toilet seat. Kids can place their feet on the support that curves around the toilet base and improve balance while sitting. This base of support can help kids who need extra support or have balance needs.

The Step and Go stool is another, more inexpensive option. Adding a supportive base can help calm nerves of unsupported sitting. Children can use a wider base of support with this type of stool.

Potty Training Chart– While this isn’t a potty training seat, a training chart can be used to promote extended sitting on a potty chair, and to allow kids the ability to build up patience to sit and wait on a potty chair.

Starting out by using a potty training chart to encourage kids just to go to and sit on the potty seat is a great start for younger kids or those who need to accommodate for sensory needs.

A visual tool such as a potty training chart can be a practical way to reinforce individual skills that make up the process of toilet training. The nice thing about toilet training charts is that they can be individualized, based on the child’s needs.

Some kids with special needs or sensory needs may be afraid of walking into the bathroom. A sticker chart can be one strategy to address that aspect given various modifications or activities that can help address needs.

Step Stool with Handles– Having a handle can help little ones who struggle with balance or feeling unstable when sitting on a regular sized toilet seat. This one has a step stool that provides a base of support through the feet.

Toilet Seat with Pee Guard– This seat insert has handles and slight curvature to the sides of the toilet seat ring, providing support and a sense of stability when seated on a regular size toilet. The urine guard is helpful for both boys and girls.

Three-in-one Potty Training Seat– As a mom of four, this 3-in-one potty training seat is a favorite. It goes with kids from the toddler stage when a smaller, floor potty chair is helpful in training. The ring insert can then be used when transitioning to a regular sized toilet. Finally, the seat forms a step stool for using either on the toilet or when washing hands. This is a convenient toilet training seat for families!

A lower toilet position is closer to the ground and fits a smaller bottom. This helps with transition to a regular size toilet and allows for comfort and confidence in young children. This potty training system is great for the child who appreciates consistency.

 Ring Reducer– There are many styles of toilet seat ring reducers out there and they serve a great purpose; to reduce the size of the opening on the toilet seat, allowing for small kids to feel more safe and secure when sitting on the toilet. This is a good transition seat to a regular sized toilet. For kids who struggle with coordination and balance, this ring reducer can be just the ticket to potty training success.

Disposable Seat Covers– These seat covers are convenient for kids who tend to grab the toilet seat when sitting on a regular-sized toilet. When out and about in the community, it can be helpful for some kids to use a seat cover that is more effective than just using toilet paper. Some of our kiddos can’t tolerate sitting without holding onto the seat or just can’t follow the directions to “not hold onto the seat”.

These special needs potty training seats can be a guide to getting started with potty training for special needs kids.

Physical Limitations and Special Needs Toilet Training

While these potty training seat options just cover the surface of potty training, it’s important to remember to consider the underlying and developmental aspects of potty training.

The therapist’s perspective can play an important part in identifying any developmental or transitioning needs when it comes to potty training. While there are many more specific tools that can be used with special needs toilet training as well as typically developing kids, these are just some of the basics.

Remember that there truly is not a one-size-fits-all aspect for toileting. Some of our kids with more physical special needs or developmental considerations may benefit from a more extensive and supportive seating system.

That’s where the occupational therapist comes into play with identifying needs and tools that will promote independence and function.

There are many considerations that should be addressed when it comes to seating and toilet seats. First and foremost is the safe positioning of the individual on the toilet. Other considerations, depending on the special diagnosis may include:

  • reflex development and maturation
  • muscle tone
  • range of motion
  • balance
  • motor skills
  • attention span
  • motor planning
  • visual perceptual skills
  • postural reactions
  • joint tightness
  • eye mobility
  • cognitive considerations
  • weakness
  • sensory processing challenges
  • self-concept
  • body awareness

In the book, The Toilet Training Book: A Developmental Take on Potty Training for Kids of all Abilities, we cover more on special diagnoses and potty training, including strategies and tips for individuals with cerebral palsy, Spina Bifida, trauma, Traumatic Brain Injury, ADHD, Autism, and other general considerations.

Use these potty training seats for special needs kids when beginning the potty training process with kids of all needs.

Potty Training Seats for Physical Needs

Toileting Seat System- There are many toileting systems on the market that address physical needs. Seating systems are intended to  promote positioning, safety, mobility, transfers, function, and quality of life of the individual. Look for a system that meets the budget and can efficiently accommodate various needs such as toileting, showering/bathing, hygiene, etc.   

Systems can come with a variety of adjustments and supports. Consider the need or use of the following supports:  

  • Headrest
  • Backrest
  • Armrests
  • Lateral back supports
  • Harness
  • Seat belt
  • Tray
  • Anterior support
  • Hip guides
  • Abductor
  • Urine deflector or guard
  • Calf supports
  • Lower extremity lateral supports
  • Ankle straps
  • Footrest
  • Tilt in space (backward/forward)
  • Recline
  • Height adjustments
  • Push handles (for caregiver support)
  • Wheeled base
  • Molded and Foam cushions
  • Pan/adaptability for use over a toilet or as a stand-alone toilet chair  

Support Station for Toileting- A standing support station can be used in assisted hygiene or assisted toileting. The standing station can be a support to transfers and can be beneficial to clothing management, self-care, skin care, and undergarment changing.   

The support station is a helpful tool for improving function and dignity of clients as can perform aspects of toileting, as well as participate in self-care. This is a means for reducing diaper use as well, further improving dignity.

Additionally, support stations are a tool for improved safety of caregivers. When clients stand at a standing support frame, they are truly building strength, endurance and self-care skills in a natural manner within the occupation of toileting. 

Wiping after toileting and special Potty seating

When it comes to pericare, there are things to consider with the various special needs toileting systems.

  • Can the child maintain their balance while reaching for toilet paper?
  • Can the child weight bear or shift their weight from side to side or forward in order to wipe?
  • Can the child reach around their body to wipe?

For More information on Potty Training 

Watch for information coming soon to this space on the new Toilet Training Book! It’s about to be released and is your go-to resource on potty training based on development and individualized needs.

This book was created by occupational therapists and physical therapists who are experts in the field of child development, sensory processing, motor skills, and function.    Need more information and real strategies to improve potty training success? Want insider tips and tools from the occupational therapist’s and physical therapist’s perspectives? The Toilet Training Book is here!

Potty Training Help

Tackling potty training is a challenge for all kids! What if you had the inside scoop on development in your back pocket? 

What if you had the know-how of occupational therapists and physical therapists with DECADES of experience to guide you?  

The Toilet Training Book offers a developmental look at potty training for kids of ALL needs.

  • This digital e-book is a deal of a resource at $19.99

The Toileting Book is a comprehensive resource covering every aspect of toilet training.  

Details about The Toileting Book:  

  • Written by a team of experienced pediatric occupational therapists and physical therapists with decades of experience  
  • Packed with information on toilet training readiness and achievement of toileting success
  • Includes Toilet Training Guides for special populations (children with fine or gross motor needs, behavioral or cognitive challenges, physical disabilities, etc.) including Sensory Processing Disorder, Trauma-Informed Needs, Autism Spectrum Disorder, Cerebral Palsy, Spina Bifida, Spinal Cord Injuries
  • Provides information on interoception and the role this sensory system plays in potty training
  • Discusses common toileting equipment and special needs toileting tools
  • Includes tips and suggestions for individualized toilet training 

This book is available in digital, e-book format AND in a physical, soft-cover book format.

The Toilet Training Book- the potty training resource you need!