Without a Crystal Ball

Our Journey through Chronic Illness

Caregiver Burn out is a serious topic that rarely is discussed in the community of parents raising children with special needs. However, it is a serious issue that most parents I’ve come in contact with face on a day to day basis. Most parents or caregivers are often so entrenched and invested in the care of the child, that many stop focusing on their own needs and wants. Many of us push our bodies to the limit, and we often find ourselves collapsed in exhaustion, feeling frustrated, alone and sad.

What is Caregiver Burn Out?

According to an article on WebMD Caregiver Burn out is described here. Caregiver Burnout: Causes Symptoms and Prevention

This is a great resource for you to check to see how your symptoms match up with the symptoms of Burn Out. I was interested to know how it impacted my friends and wanted to share my own experience. Earlier this week, I asked my friends that care for children to describe how their Burn Out manifests in their day to day life. I got answers that were quite startling. Parents reported to me their anger is heightened, they find themselves unable to keep up with day to day tasks such as cleaning, laundry or home care, several discussed issues with maintaining a healthy diet and losing or gaining weight, and a few described the inability to rest or sleep properly.

My own experience has been a combination of all of these but my biggest symptom is I withdraw. It is hard for me to deal with everything I face in caring for my son. Every day I find myself utterly overwhelmed at the scope of his care, the number of doctors, therapists, and nurses involved in our lives. There are so many opinions, conferences, and appointments that by the end of the day all I want to do is hide. Most days I find myself crawling in to bed, and nurturing a deep relationship with Netflix so I can escape reality. Over the past 4 years, I have found it difficult to have friendships that are meaningful. When I make friends, I find ways to get out of social engagements so I don’t have to deal with any more people. The problem in all of this – is I am an extrovert that thrives on socialization. However, at the end of my day, I have nothing left for anyone, including my husband, and I want nothing more than to be alone. Generally, when I start to withdraw from things I love, I also start to feel incredibly sad and isolated. I know that what I need is to connect, but I can’t physically or emotionally connect to anyone. Over the years I have had periods of self-isolation, followed up by feeling ok again, and then back to isolation.

Isolation is a common symptom of burn out, and something I have found that many of my friends experience in this community. It is hard to live in a world that most people do not understand. Each and every day can be challenging to find others that can empathize and understand your day to day struggles. However, I have learned there are ways to get out of isolation, and there are ways to get through the Burn Out.

Ways to Manage Burnout

The hardest reality of life with a child with special needs, is that there are no days off from the disease, syndrome or disorder. Every day we have to get up and battle the issues at hand. For many of us in the community, we don’t have respite care for our children or our family support is minimal so breaks are few and far between. It was important to me in thinking about this blog to consider how to help people dealing with Burn out. Here are a few things I do and my friends do to get through the burn out.

  1. Find time to Take Care of Yourself  – This one is hard for me. When people tell this to me, my skin crawls. However, it’s TRUE. There is nothing more important on this journey than taking care of YOU! I use to find a million excuses for not caring for myself, and at times this continues to be a challenge. However, I have found that over the past few years I’ve gotten better at recognizing when I need a break. This is when I ask my husband, parents or friends to lend a hand. The best way I have found to take care of myself is by exercising. I run to destress and let some positive endorphins in to my life. Other moms I know practice CrossFit, Yoga, Pilates, meditation, or take classes at the gym. Other mom’s read, go on walks, go shopping by themselves or schedule time out with friends. Try to find time every week to do something for you that makes YOU feel good and DON’T FEEL GUILTY.
  2. Find a Support Network – This one is HUGE! Day to day management of a child with considerable needs is going to tax you mentally, physically, and emotionally. It is important to find resources and places to go to connect with others. The great news is there are lots of non-profits that exist to help families and caregivers. I started by searching on Facebook for local organizations that offered support for parents with children with special needs. After I was able to weed through a dozen of them, I found an organization that was specific to my area and had parents that had children similar to my son. Getting involved with other parents has taken a burden off of me because I have an outlet to express my fears, doubts, frustrations, happiness and milestones we meet.
  3. Ask for Help – there is nothing harder for a mom than to ask for help. We are hardwired to want to do it all and not ask for assistance. However, you are going to need help. Don’t be afraid to ask friends, neighbors, and family to lend a hand on days when you are overwhelmed. It’s incredibly hard for me to do this – but I have gotten a lot better at letting people know when I’m starting to drown in burn out. I’ve learned that most people WANT to help but they don’t know how. Don’t be afraid to use your voice to get the help you need.
  4. Talk to your Doctor – If you try all of these, and you still can’t shake the sadness seek out professional help. Many people I know regularly see a therapist, consult with their pastors or priests, or work with a medical professional to manage their stress. I have done all of the above. I’m not afraid to say that I’ve had to get on medication to appropriately manage my anxiety and fear. There is no shame in realizing that caregiving can change who you are and can alter your brain chemistry. I’m glad I wasn’t afraid to reach out to someone and get help when I needed it. Most importantly – you don’t need to stay sad and isolated. There are ways out!

Burn out is a serious issue, and it can lead to many emotional and physical ailments for the caregiver. Being able to recognize when you are at your limit is critical, and then finding ways to reduce your stress and strengthening the support around you will help you through the tough times. There is no easy fix for Burn Out, and it will come and go. However, knowing that you are not alone, that there are resources out there, and there are people willing to help you – should help lessen the burden you feel in caring for a child with special needs.

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2 thoughts on “Burnt Out: Identifying and Managing Caregiver Burn Out

  1. Suzy says:

    Thank you for this! This rings true on so many levels. ❤️

    Liked by 1 person

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