Something’s Got to Give: Dealing with Caregiver Burnout When You Are On 24/7

by Kimberly Sullivan

It is day three of not sleeping through the night. It is Thursday and I am all “Thursdayed” out! My son with Spinal Muscular Atrophy is trached and ventilator dependent. He is relatively stable, but someone still must listen for alarms throughout the night in case his vent becomes detached from his trach. There is a huge home care nursing shortage in my state, Illinois, due to low compensation rates, so we currently have no night nursing. My husband works and must get up at 5:30 to get to work. He needs his sleep so that he can earn money our family desperately needs. That leaves me to deal with the overnights.

Adam at Association of Horizon Summer Camp. Mom, Kimberly, gets the whole week off to rest and recoup from her role as caregiver.

Like I said, by Thursday, I am just done. I am so tired and grouchy that I can’t even stand myself. Fortunately, Friday is just a few hours away. On Friday night, my husband takes over the care overnights so that I can get two solid nights of sleep.

I still find myself dealing with caregiver burnout on a regular basis. Sometimes it is something I can push through, and sometimes it drives me to tears.

It is easy to neglect yourself when you are the primary caregiver. Everyone seems to be demanding a piece of you. Sometimes there is just nothing left to give. What do you do when you have reached the point where something has to give or you just can’t continue?

Three Strategies to Avoid Burnout

I have a multilayer approach to providing good self-care during episodes of caregiver burnout. First, I try to schedule regular times to get away. I also make sure I have trained friends and family members to step in to provide my son’s care. And finally, one unexpected way I have found to deal with burnout is to find a way to bless someone else.

1. Time Away

One of the most important ways that I deal with caregiver burnout is to schedule regular time to get away. Sometimes this is as simple as going out for a coffee with a friend, going to a movie, or walking aimlessly through Target.

At least once a year, I set aside time to go away overnight. I really enjoy going to a retreat for Special Needs Moms. The cost is relatively low. Several of my Special Needs Mama friends plan to attend and we go together. It ends up being a weekend filled with fun, laughter, and friendship. This is just what I need to come back refreshed and recharged.

Every couple of years, I completely get away with my husband and get away from everything. This is by far the hardest thing to accomplish and takes a lot of planning.

2. Training Friends and Family

None of these things can happen if you don’t have trusted friends and family who are able to care for your child with medical needs. If you are anything like me, you feel like you are the only one who will be able to take care of your child. As hard as it is, you have got to make sure someone is trained in caring for your child so that you can get a break.

The easiest option is your significant other or another family member. He or she is aware of your day-to-day routine and can jump in to give you a break with a moment’s notice.

Friends are another good option. It may be harder to arrange for them to learn your child’s care. It may also be harder to coordinate your schedule with their schedule. A third option is a paid caregiver. This might be a nurse that your insurance may pay for or someone you personally hire.

It is important to have people available so that you can get a break. It is best that they are trained before you need them.

3. Be a Blessing

Another way that I have found to combat caregiver fatigue is to be a blessing to someone else. This seems so counter-intuitive! How can I possibly find time to be a blessing to someone else? I am so tired, and I barely have the energy to take care of everything I have to do!

I have found that taking my mind off my troubles and helping someone else gives me a feeling of happiness and fulfillment. Using my life experience to help others makes me take my focus off my struggles. After taking the focus off me, I am ready to jump back into my role as caregiver.

I really try to make sure that the ways I help others are not overly taxing on me and that the time frame works for me. If you are not able to easily work it into your schedule, it becomes another burden and the positive effects are diminished.

Tackling Burnout

As I mentioned before, I was all “Thursdayed” out. I woke up crabby and just needed a break. I had a nurse for a few hours, so I grabbed my coffee and headed out the door. I spent an hour with a friend whose husband has been in the hospital for the past month. We laughed, we cried, and we hugged. I left feeling refreshed, and now I think I can make it through one more night of listening for my son.

Caregiver burnout is a very real part of being a caregiver. You need to be sure you are taking time to care for you and time to get away. Each person will have his or her own ways to cope. Find ways that help you. Make sure to give yourself permission to relax and recover so that your child gets the best of you.

One final thing: if you are so burnt out that you are feeling hopeless, please reach out to your physician and ask for a referral to a mental health professional. Sometimes dealing with extreme caregiver burnout requires professional help.

Author: Kimberly Sullivan • Date: 9/18/2018

About the Author

Kimberly Sullivan is the CEO of the Sullivan Family where she manages her husband, son, nurses, and two dogs. Her hobbies include sleeping and chocolate. She details her experiences as the mother of a son with Spinal Muscular Atrophy on her blog, Please Don’t Pet the Special People at

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