How to Survive Caregiver Burnout as a Parent of Kids with Special Needs
by Stephanie Wolfe
Read time: 8 minutes
Parenting is stressful for all parents, but parents of children with special needs deal with stress on a whole other level. Our daughter, Addie, is 7 years old, has a tracheostomy, epilepsy, and is on a ventilator. She was in the NICU for the first 10 months of her life and has been home ever since. She's got a lot of medical needs.
Being a parent to a child with special needs can be like having a full-time job. In fact, it's like having two full-time jobs. It often includes things like making phone calls to insurance or medical companies, responding to emails regarding school accommodations or therapies, constantly juggling calendars, and of course, meeting their basic needs - it's constant.
This doesn't even account for the revolving door of people who are in and out of our homes all day or the lack of privacy that comes with that. And that's if you're lucky enough to have nursing or medical professional help in your home. There are also worries about the costs that come with having a child with special needs. Finances are a big stressor when you need supplies, machines, or nursing support.
It's easy to see how parents of children with special needs can quickly head down the path of caregiver burnout when they don't get the support that they need.
How Caregiver Burnout Can Happen
Picture this. It's 2 p.m. You get a text from your daughter's nurse that she won't be able to come in for the third night in a row. She's sick and she knows it's best for your daughter if she stays home until she is well enough to come back to work.
When this happens at our house, we immediately jump into action. I share the news with my husband, Mathew, and we come up with our plan for the night. I'll cook dinner, put our son, Lawson, to bed, give Addie her nightly feed, and draw up all her medicines. Then we will bathe Addie and move her to her room together for the night. We pull out Addie's trundle bed to give Mathew a place to sleep. We dress Addie, do her treatments, give medicines, and finish around 10:30 p.m.
We are already so tired. We know there won't be time to relax tonight, and Mathew will likely get little sleep as every beep will wake him for fear that something is wrong. The middle of the night comes, and Addie's trach needs to be changed. She is having trouble breathing and if we don't take care of it, she could end up in the hospital. We get it set up, change it, and eventually crawl back into bed. We wake up the next morning early and exhausted so we can start a new day.
This is just one scenario we've had in the past. Even during days or nights with nurses, Mathew and I feel caregiver burnout. Caregiver burnout is real, but our children always come first, and we are happy to do whatever needs to be done for them.
What is caregiver burnout?
Caregiver burnout is a state of physical, emotional, and mental exhaustion. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able.
5 Signs of Caregiver Burnout for Special Needs Parents
Did you know that special needs parents typically have chronic stress relating to raising a special needs child? It's magnified more when the parent has caregiver burnout. Many special needs parents experience anxiety, PTSD, depression, intense fatigue, weight gain, weight loss, medical issues, low sex drive, or insomnia. They are even at higher risk for divorce, which is why it's incredibly important to be aware of the signs and act as soon as you think you may be experiencing caregiver burnout.
Mentally checking out.
Many times there is trauma involved in having a child with special needs, and mentally checking out is a way that some people try to cope. It is not uncommon to see special needs parents use their phones as a distraction and a way to help them escape. Special needs parents experience so many emotions every day and it is exhausting. If you find yourself constantly trying to mentally check out, it's time for you to take a break or ask for some help.
Suffering from memory loss.
A couple years ago, I spent some time trying to work on myself and went to therapy. It was really helpful. I mentioned to my therapist I was having trouble recalling information. Things like stories that were told to me, conversations I'd had with others, and more. She told me that it was very common with caregiver burnout to suffer from memory loss because the brain was in constant trauma mode. I had no idea. Think back - are you experiencing any memory loss? If so, it may be time to talk to a professional.
Inability to rest or relax.
Special needs parents typically have a hard time resting or relaxing. Our minds are constantly focusing on our children's “sats” (aka saturations), thinking about our plans for the next day, what the weather will be like, how and when we need to prep medicines or feeds, and even about our children's attitudes. We dwell on the day that just happened and can fixate on the next day.
Many special needs parents are often sick. When you combine lack of sleep, not eating healthy meals (because you're usually so busy or in hospitals where takeout is easier), and other stressors, it's very easy to get sick. Special needs parents often don't take care of themselves either, and while they continue to do all they can for their children they don't take a break, which can make things worse.
Rarely spending time with friends or doing hobbies.
Some special needs parents don't have support in the form of nearby family, friends, or nursing assistance. Because of this, it is often easier for parents to stay home instead of doing things for themselves. They miss out on spending time with friends or doing hobbies simply because taking the time to train someone or “get them up to speed” takes too long. Alternatively, even if a special needs family does have these resources available to them, they may find it easier to stay home due to the worry they experience when they leave. It can take the fun out of the things they love.
How Caregiver Burnout Has Affected Our Family
In our own lives, I've seen caregiver burnout start with our son, Lawson. When Addie's pulse machine beeps more than a couple times, he runs over to her to make sure she's ok. He's three now, but I saw him start doing this before he even turned two. In my husband, I've seen it show up at times as depression and loneliness. For me, I was diagnosed with CTSD, Continuous Traumatic Stress Disorder, from the stress I was constantly under.
It's important to pay attention to the signs and seek help as soon as you notice one or more of your family members experiencing it. As hard as it can be, when we get help, we feel more equipped and capable of handling it together. Despite experiencing caregiver burnout, we wouldn't change our daughter or our situation for the world.
What Are the Signs of Burnout for Parents of Special Needs Children?
5 Ways to Break Out of Caregiver Burnout
Ask for help.
This one can be hard for special needs parents, but it is very important. Talk to nurses about increasing their hours if needed, ask family/friends if they can help, and research respite care where you live. It takes a village! It might look like bringing freezer meals or someone watching your child for an hour so you can take a hot shower for once. Whatever it is, ask for help!
One of the best gifts I ever had was from a friend, Suzanne. When our family was going through a particularly hard time Suzanne asked if she could come bring dinner to take some stress off my plate. She held Lawson as I ate, and we chatted. She encouraged me to take a long bath while she watched Lawson and Addie, did my dishes, and threw out my trash. It was such a blessing. Another instance was when my friend Juanita said the Lord called her to come sweep my floors. She had never been to my home before but came over, swept, and took that burden off me. What may have seemed so small to these ladies was an incredible blessing of much-needed help for me. Help that I didn't even realize I needed until it had been done.
Take care of your health.
You can't help others well when you don't take care of yourself. One way that Mathew and I take care of our health is making sure we take our supplements daily. It's a small thing but it's easy and fast to do. Despite the lack of sleep and the toughest of situations, we have found ourselves healthy for several years now because of simple things like that. We also eat lots of green veggies and limit our caffeine. We schedule regular doctor appointments for mental and physical health, eat other healthy foods as often as possible, and exercise (even if it's just taking a few laps around the house). These things make a big difference for special needs parents.
Find your support system.
I can't express enough how helpful finding a support system can be for special needs parents experiencing burnout. Our current church has a program for members with special needs, and we recently have started taking Addie to it. The volunteers in this program allow Addie to have fun, and they genuinely enjoy learning about her. Bible study has also been incredibly helpful for me, and it's something I make sure to carve out time for weekly during the school year.
Other support systems can be as simple as finding special needs groups online. Facebook is a great way to connect with other parents. You can find groups about autism, ADHD, Down syndrome, epilepsy, multiple sclerosis, muscular dystrophy, learning disabilities, and more. It's nice to find people who understand what you're going through and can help give advice. Sometimes these groups even have local meetups, activities for kids, or other events. Just as you make sure to schedule time for your child with special needs, it's important to do the same for yourself so you can seek support.
Make plans to do something fun.
This one is important. As hard as it is to get away, or as hard as it is to get away and not stress the entire time, it is so important to make plans to do something fun for yourself. If this means a couple hours to yourself at a bookstore, a run to Target to just browse, or even taking in nature at your local plant nursery, do it. If it means scheduling a vacation with a friend, do it. Whatever it looks like for you, put it on your calendar and do it. It's easier said than done, I know. Even if you can't get out of the house, think of ways to enjoy yourself at home. Bring out the board games, invite friends to watch your favorite show together (your friends won't judge the state of your house, I promise), or do a movie night with popcorn and snacks!
Prioritize your tasks.
Making small to do lists can be so helpful for special needs parents feeling burnout. Separate task lists into levels of importance so you can do the most important things immediately and save the less important for days when you have extra time or energy. You'll be so glad you did it and you'll feel less overwhelmed.
Caregiver burnout doesn't have to take over your life. If you choose at least one thing from this list, you'll start to see a change for the better. I know it can feel like things are always hard, you're exhausted, or that you'll never feel like yourself again. These feelings are valid, but remember they are temporary. The more you work toward taking care of yourself again, the better you'll feel. Once you get your mental and physical health where you need, there will be no stopping you as a special needs parent!