8 Essential Tips For Preventing Caregiver Burnout

Special Needs Caregiver Burnout

“Who needs caffeine when I can have adrenaline-fueled adventures all day and all night?”

That’s what I used to say when my son was little.  By 1 or 2 pm on most days, my hands started trembling from the constant stream of adrenaline. My mind was always on alert because my hyperactive son was an escape artist with a knack for getting himself into dangerous situations.  I had to think quickly on the run.

Stress Hormones

After my son turned 3, I noticed that the trembling had stopped.  The high stress level had become my new normal.  Researchers at the University of Wisconsin at Madison found that mothers of children with autism had significantly lower levels of the stress hormone cortisol compared to mothers of children without disabilities.

Repeated exposure to stress over time is known to cause diminished stress hormones.  The same phenomenon of reduced cortisol levels is also found in soldiers in combat zones who become desensitized to danger.

The Symptoms of Caregiver Burnout

Desensitization is one reason why caregiver burnout usually is not recognized by caregivers themselves.  The symptoms of burnout overlap with those of depression and Post-Traumatic Stress Disorder:

  1. Fatigue
  2. Irritability
  3. Feeling numb or developing an uncaring, negative attitude
  4. Heightened sensitivity
  5. Social withdrawal
  6. Loss of interest in favorite activities
  7. Frequent illness and/or chronic pain
  8. Thoughts of self-harm or harming the person with a disability
  9. Difficulty concentrating
  10. Changes in sleep patterns
  11. Changes in appetite and/or weight
  12. Feelings of hopelessness and/or helplessness
  13. Reliving upsetting memories
  14. Inappropriate use of alcohol and/or medication

The Damage

Untreated, caregiver burnout can lead to an inability to function in everyday life.  It may also escalate into a life-threatening situation for the person with a disability, the caregiver and possibly other family members.

Caregivers need loving support from friends and family.  Unfortunately, the behaviors associated with burnout tend to push away friends and family when they are most needed.  Fortunately, it is possible to recover from burnout and prevent it from happening again.

1. Count your blessings

When I realized that I was in over my head, I made a list of all the people I could call to ask for favors.

I asked one friend to bring over lunch and play with my older son while the baby and I took a nap.
I asked another friend if she knew of anyone I could hire as a mother’s helper – and she did.
I asked my mother to come stay with us for a few days.
I called my insurance company and learned that there was a counselor one block from my house whose services were 100% covered.

With each phone call I asked for one specific service that would help me.  Those favors added up quickly.

2. Go to the doctor

Get a complete physical to rule out illnesses that may contribute to burnout.  Caregivers often avoid going to the doctor themselves because they don’t want to leave their loved one even for a short time.  It’s important to have a back-up caregiver for situations like this.

Caregivers may also want to avoid discussing certain health problems.  For example, my physician asked me questions about domestic violence when he saw dozens of large bruises on my body.  I explained that my husband is gentle and loving, but that I was often injured while protecting my child from accidents.  I don’t think the physician believed me, but he stopped asking questions.

3. Respite care

Many people do not realize that it may be possible to get respite care through their local community health agency - usually the fee is on a sliding scale, depending on income, and the primary caregiver is permitted to select the respite caregiver.

The first step is to get a Person-Centered Plan (PCP) for the person with a disability.  The PCP will outline the number of respite hours per month and how it will be paid for.  The next step is to select the respite caregiver.  It’s a good idea to start with brief respite periods and build up to longer periods as needed.

4. Healthy Lifestyle

Find ways to eat nutrient-dense food, exercise more frequently and develop a regular sleep routine.  Focus on changing one small thing at a time, for example, taking a walk after dinner or eating a green salad as a snack instead of chips.

5. Creative outlets 

Deepest Mandelbrot Set Zoom AnimationSelf-expression can be healing and rejuvenating.  Many parents of children with special needs have some sort of creative pursuit – photography and scrapbooking, music or writing, sewing or cooking, woodworking or making jewelry, landscaping and gardening.

An Outlet can be something as simple as jotting down a few sentences in a journal or arranging seasonal items on an indoor “nature table.”  My husband’s creative outlet is the computer: he composes electronic music and makes movies based on graphic representations of mathematical equations known as fractals.  The results are definitely artistic.

6. Daily rituals

Rituals are known to have a calming effect on the human mind.  Prayer and meditation are wonderful, fulfilling rituals, but rituals are not necessarily religious.  Drinking a cup of tea while watching the sun rise, saying “I love you” to someone, reading a page from a favorite book, stretching, making a gratitude list, talking to one friend every day are all examples of healthy rituals that can enrich our lives.

7. Personal boundaries

Saying “no” is a valuable skill.  I am full of big ideas, but I have to limit myself to what I am able to do comfortably – if I stretch myself too thin, I am no longer able to care for my children.

8. Slow down and re-think priorities

Adrenaline-fueled adventures can’t go on forever.  For some odd reason, it wasn’t possible for me to stay awake with my son all day and all night.  I had to think carefully about my goals for myself and my family.  I needed time to rest and reflect on life.  So I scheduled in quiet time and breaks every day.

When I look back on the changes I made as a result of burnout, I realize that it was really an opportunity to re-discover joy in my life.  Being a caregiver is a labor of love.  It’s not enough just to survive.  If I’m going to take care of others, I have to thrive.

How do you prevent caregiver burnout? Let us know in the comments below.

Karen

Written on 2012/10/04 by:

Karen

Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities"
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  • Susan

    Wonderful depiction of our world! The thought struck me while reading that perhaps the stress/cortisol reaction is what occurs in individuals dealing with anxiety disorders. Just living each day, with heightened sensory processing and the neurological limitations of the brain, they feel overly stressed. After some time, they often find themselves dealing with depression; and it often cycles, varying by individual. Interestingly, the healing process you described is an important part of the self-regulation toolkit they are taught for coping.

  • Jenny

    I love to run and I when I am out on the trails I can think or pray or absolutely nothing! It has saved me and keeps me grounded!

  • http://twitter.com/bonniemurphy Bonnie Murphy

    Great post and I just started anger / stress management course
    strictly for me to help my mental health. So much emphasis in society placed on
    our physical health; cholesterol, heart, blood pressure etc. – in our world the
    extra stress that comes with being parents special needs parents can trigger
    the “fight or flight” natural instincts in our bodies much more than
    our peers who don’t have special needs children.
    My faith always has brought me
    through to survive from day one to be the parent I needed to be to learn,
    change and “Roll With It” – Steve Winwood but let’s be honest we have
    to incorporate the same strategies we are doing for our children on ourselves
    to keep the process going because it is a balancing act; keeping all sides of
    life in check. Job, spouse/significant other, other children not special needs,
    other family, friends, daily life issues, special education issues, special
    needs issues, personal care issues and unique issues that pertain to each of us
    individually. Note I put “unique issues that pertain to each of us
    individually” last…no mistake there – we put ourselves last – natural
    but so important to feed ourselves as this article states or we cannot be good
    to anyone else. Summary: Anger / Stress Management Class to develop
    tools to keep a consistent level in all my interactions by identifying my
    triggers and

    I really found the information from the University of Wisconsin
    at Madison; parents with children with Autism having less stress hormone
    cortitol than peers (parents with children without autism.)

    Recommendations from this article for preventing parent burnout
    that I really liked and do:

    1. CREATIVE OUTLETS: Artistic, Spirituality & Prayer and Humor
    Artistic: Love doing artistic escapes with and
    without my children. Great thing to do with your non autistic child(ren) to get
    in that time you often feel guilty about spending on other. Also do with my
    child on spectrum to get into her world and see world in such an amazing way -
    I love her mind and remind her often how blessed she is to be so lucky to have
    a mind that can go to levels most people’s cannot. When I take time for myself
    to do art, this is where I reconnect with me – and just let myself go in a
    project I set out to do and what it ends up is something totally different.

    Spirituality and Prayer: I gave this all to God and continue to
    do so on a daily basis. I don’t ask God why because I know there is a reason
    and also understand I won’t understand it until I am supposed to. This was a
    long while back and since them I do understand a lot of the whys. I also know
    my daughter has a purpose and it is my job to make sure she gets to her full
    potential so she can be a productive producing adult who is independent in the
    world. There are days I throw my hands up and just say “God I trust you
    and I live in your word but man did I slip up today, not long after I got out
    of bed, I know it is the behavior and not the individual….yadidadada…can
    you give me the strength to know the difference, pull up by boot straps, put my
    big girl panties on and get a grip?” On my way I go and Woot there it
    is…on to another day.

    HUMOR and COMEDY: Third within Creativity is HUMOR, lots of it and laugh at
    yourself frequently. We all know meltdowns, I call myself out on Mommy
    meltdowns and laugh with others like me who are on this journey because they
    understand…. I also listen to comedy on radio while driving or anywhere I can find it…laughter is just as powerful as blowing a gasket getting angry – at least for me – being IRISH and all. :-)

    Recommendations from this
    article that I want to try:
    PERSONAL BOUNDARIES – How many times have I read this, just say
    NO, don’t over commit?

    SLOW DOWN REFLECT PRIORITIES – One that I’ve never really done
    with effort – it is time to commit.

    Sorry so long, my addition what loved/used and going to try but
    this was so inspiring to me and easy to read – parents will take time to read
    this and try it. Thank you again.

    • http://www.facebook.com/profile.php?id=1556774338 Karen Wang

      Thank you so much for your ideas, Bonnie. You are right about humor and spirituality being key to a healthy attitude!

    • ANKA

      THANK YOU. I HAVE A ” FREEZE” RESPONSE, FLY OR FIGHT ARE GONE FROM MY LIFE….
      .

  • Debra Jenkins

    I started a program of arts education for people with special needs. We specialize in dance, music, art, and musical theater. Does anyone know of any programs like mine anywhere in the country? Please let me know!
    jenkinsdebra@me.com
    http://merrimackhall.blogspot.com

    http://www.merrimackhall.com/johnnystallings.html

  • Chris McGee

    This is a great post. I sometimes over-think things and quickly decide that caring for myself is too difficult. I appreciate this reminder of these simple tips!

  • Jules

    Some days I just shut down. It can get discouraging, but I am hopeful when I see my child’s beautiful sweet face.

  • http://www.facebook.com/ross.l.wise Ross Layton Wise

    I saw this post on Facebook, and realized the 8 symptoms described me. I am a stay at home dad, and I stay at home with my child everyday. It seems like I’m living the movie “GroundhogDay”.