If you're living with a chronic illness, you're in the right place.

Sunday, November 18, 2012

NHBPM #18: Advice for Caregivers

12:39 PM Posted by Tiffany Taft , ,
Steph and I spend a lot of time helping the "identified patient," which is medical-ese for the person living with the chronic illness.  Most of my research has focused on the patient experience, with the exception of 1 study I recently published on mothers of children with eosinophilic GI diseases (EGIDs).  A lot of research has been done on caregivers, with a mix of studies on parents of children with illness and adults caring for their aging parents.  No matter who is being cared for, we know this:  being a caregiver is stressful.

In my study, we found that the #1 predictor of mothers' stress levels was their own mental well-being.  Those who reported more anxiety or depression also reported feeling more stressed about being a caregiver.  Makes sense, doesn't it?  When our mental health isn't doing well, we are less equipped to handle stressful situations.  Anxiety taps a lot of mental energy if we're spending time worrying rather than problem solving.  Depression slows us down and saps our motivation.  And this just adds fuel to the caregiver-stress fire, creating a vicious cycle that's difficult to break.

What led me to study caregivers was a personal experience with my newborn daughter, who had digestive problems from dairy and eggs.  I was nursing and using some formula, so we cut dairy from my diet, because it's the most common culprit of the symptoms she was having, and put her on this rather stinky hypoallergenic formula.  But her symptoms persisted.  I remember how upsetting this was for me, even though she seemed rather oblivious to the problem.  I wanted to FIX the problem so badly, but what I was doing wasn't working like it should.

Knowing what I know about EGIDs, I went on the 8 food elimination diet to try to identify the remaining food culprits and reintroduced foods one at a time, which led me to discover the egg problem.  Her symptoms cleared up and I remained egg and dairy free for the next year.  As I reflected on my rather brief experience as a parent with a child whose body wasn't working properly, I thought about parents of kids with EGIDs and the caregiver study was born.  Steph and I were fortunate enough to present the findings at the recent CURED Foundation patient symposium earlier this month.

So what is my advice for caregivers?  These tips are a combination of take-aways from my personal experience and those backed up by research.  It's certainly not all-inclusive, but what I feel are the more important things to think about.

  • Evaluate your mental-well being and how it may be contributing to your stress levels.  Signs of depression include loss of interest in most things you once enjoyed, problems sleeping, changes in appetite (increase or decrease), feeling tearful, irritability, and problems concentrating.  Symptoms of anxiety include racing thoughts or "not being able to shut off your brain," problems sleeping, feeling agitated or restless, and difficulty concentrating.
  • Think about your thinking.  If you're not feeling well emotionally, evaluate your self-talk.  What did I just tell myself before I felt sad or anxious?  A lot of our thinking becomes automatic so that we're not even aware of it.  Our minds are only quiet for a few seconds at a time, and we often become very aware of our thoughts as we're laying in bed at 2 in the morning because we can't sleep.  Write your thoughts down and try to look at them through an objective lens.  What would you tell a friend who's thinking what you're thinking?  Check some of our previous blog entries under "Monday Metacognition" here and here.
  • Take inventory of how you cope with stress.  And does it help?  Make a list. How much time to you dedicate to yourself?  Caregivers can become immersed in taking care of their child to the point they lose their previous identities.  When is the last time you exercised, or went out with friends or your spouse? 
  • How is your support system and are you using it?  Are there people in your life you can truly count on and are there people who may not be as helpful?  Think quality, not quantity.  
  • If you or your child are feeling overwhelmed, seek help from a professional.
And lastly, cut yourself some slack.  Forgive yourself if you're not able to fix everything.  Focus on the positive that you do and the difference you make in your child's life.  Don't discount that if one thing isn't going right.  There were times with my daughter I sat and cried because I felt like a total failure as a mother because I couldn't "feed her correctly."  My vision was so tunneled sometimes that I ignored that she was a happy and healthy baby, in a home full of love, and thriving.  If you find yourself in that tunnel of doubt and self-deprecation, find any way you can to step outside and see the whole picture.