Parents who care for children with special needs can experience burnout and depression, regardless of what type of needs or accommodations the child requires. Some children require minimal accommodations while others are more complex. Parents who are unpaid caregivers are often required to rearrange work, family, and social schedules in response to the medical and behavioral challenges of their child.
Children may require monitoring throughout the day and night for medical interventions such as tube feedings, heart monitoring, frequent medications, oxygen monitoring, or repositioning to prevent pressure sores.
Behavioral challenges may also require constant supervision. Children who are non-verbal or who lack language and speech skills may act out with frustration when they are not understood. Many parents spend hours and hours helping their children learn to communicate with minimal frustration. Some behavioral challenges put children at risk of serious harm such as self-injurious behaviors, wandering from home or school, poor decision-making, lack of social awareness, or pica.
How many parents are in this situation?
In 2020, it is estimated that 53 million American adults were informal unpaid caregivers in the United States and about 44.8 percent of them are less than 45 years old. Almost 90 percent care for someone related to them. About 50 percent care for a child and the other 50 percent care for a parent.
How many caregivers suffer from burnout or depression?
Burnout is common. When surveyed, 40 percent of informal and unpaid caregivers report feeling emotionally stressed, physically strained, and experiencing financial problems due to the expense of caring for someone and for missing work opportunities. Some caregivers report experiencing depression as a result of burnout.
How do parents navigate the lanes of burnout and depression when raising a child with special needs?
Parents who successfully navigate these lanes say that it takes love, understanding, and a whole lot of patience. In addition, it takes connecting with other parents with similar stories. If you are a parent who is just beginning this journey or one who feels exhausted, here are six statements you may relate to that reflect the thoughts, feelings, and strategies of caregivers who are also navigating the lanes between burnout and depression.
1) “I can’t catch up. I can’t keep up…. There’s just too much to do.”
Childcare is time-consuming for every parent. But, for parents of children with special needs, the tasks are doubled and tripled as compared to tasks for “typically developing children”. Even more overwhelming is that some children do not gain independence. Therefore, some parents remain in the caregiving role for over 50 years.
Catching up throughout the day can seem impossible, especially considering the additional responsibilities of caring for other children in the family. Many parents are also employed in addition to keeping up with the everyday household tasks of laundry, cooking, and cleaning. When it all seems “too much”, burnout can occur. Signs of burnout may include exhaustion, forgetfulness, concentration, poor sleep, and illness.
To decrease burnout, take an inventory of all the tasks you do in a day and prioritize them from top to bottom. (Even doing that sounds overwhelming.). However, if you can identify tasks that can be delegated and what tasks cannot, you will have a good start. For example, tasks such as picking up medications, laundry, cleaning medical equipment, feeding the dog, and transporting other children to and from school are tasks that others can do. Identify all possible resources at your school, home, and community. Assign tasks to others when possible.
Prioritizing and delegating can help a caregiver gain a sense of control, decrease symptoms of forgetfulness, anxiety, depression, exhaustion, and feeling sick.
2) “What if it is all too much? I need help to function.”
Realizing that your burnout has headed you in the direction of depression is the first step to stopping the cycle. Get help. You can start by taking a short self-assessment.
Self-assessments can help you to identify how you are coping and what areas are most difficult. You can identify symptoms such as lack of sleep, overwhelming stress, and chronic frustration. Share your results with your primary care physician or a counselor who can help you identify coping skills and increase your emotional intelligence.
Daniel Goleman, a psychologist, focuses on five key elements of emotional intelligence: self-awareness, self-regulation, motivation, empathy, and social skills. Improving emotional intelligence can help you become more aware of yourself, others, and how you are coping in the context of the situation. This will lead to more effective ways to function in the role of caregiver.
3) “I have tried to explain my child’s diagnosis… but it seems no one can understand.”
Have you ever read the poem by Emily Perl Kingsley? It’s worth the read. It will remind you of the first days after your child’s diagnosis when you realized that the typical joys and challenges of raising a child will be different than what you had expected. Not that it’s bad, it’s just different.
Explaining your child’s diagnosis or needs to family, friends, and people new to your child’s life will be necessary at times. People close to your child (immediate family and friends) need to understand so they can get to know your child. The more they know, the more they can be inclusive and see your child as a unique person, not a diagnosis.
With this said, parents are often hesitant to explain a child’s diagnosis for fear of stereotypes and stigma. Having to explain a diagnosis over and over and worrying if others will understand can lead to burnout. The good news is that you don’t always have to explain. Just because someone is staring at your child’s headphones, helmet or behaviors does not obligate you to explain.
4) “I think I slept last Tuesday… but I can’t even remember.”
When a child has seizures, cancer, cardiovascular difficulties, neurological symptoms, or movement disorders, their health status can become unstable, requiring hospitalizations and around-the-clock-care once they are discharged. This period of instability is considered a “crisis”. During this time, caregivers need extra support. One of the main problems is getting enough sleep because oftentimes, their child requires medications, comfort, and other interventions throughout the day and night. A crisis can last from days to weeks.
How do parents navigate this? They plan ahead. Although they cannot predict when the next crisis will occur, they are ready. They have a suitcase packed and ready to go for themselves and their child. Their emergency plan is in place, identifying the names and numbers of who will replace them at home to care for other children while they are at the hospital.
If your spouse is willing to help, arrange the breaks and help around both of your schedules. Your child may enjoy seeing other familiar faces while you take a break. Your body needs rest to stay strong.
5) “I gained a ton of weight. I eat when I can and drink alcohol to calm my nerves.”
Many people gain weight while stressed because they tend to eat more comfort foods. Comfort foods are high in calories, carbohydrates, and sugar. They are quick and easy to prepare such as macaroni and cheese, French fries, breadsticks, and (just open the bag) potato chips. Many eat comfort foods mindlessly, without attention to salt, sugar, or carbohydrate quantity.
Emotional eating can temporarily distract you from stress and negative emotions. It is a way of self-medicating that feels soothing. Alcohol can do the same. Alcohol is a sedative that depresses the central nervous system. It can produce a sense of calmness, reducing the intensity of stress, fear, and negative thoughts that run through your mind.
However, getting into the habit of drinking alcohol or eating mindlessly to cope with stress can be detrimental. Alcohol is high in calories and intoxication may prevent you from your caregiving role because you are impaired. Comfort foods may cause weight gain and high blood pressure. Coping with stress with food and alcohol tends to establish bad habits that eventually, you will have to change.
Focus on establishing good habits. Prepare healthy foods in advance (cut up cucumbers) that you can prepare and make easily available. Drink water or any other non-alcoholic beverage to keep hydrated. Take control of what you eat and drink so it does not control you. Good habits keep you strong and confident.
6) “I feel like I am alone. My spouse is not really here with me.”
The overwhelming stress parents feel about their child’s care needs can throw life off balance. The needs of the child may be a significant distraction from what each partner needs from their marital partner. This distraction can lead to poor communication between couples, even if in the past they connected and communicated well.
Try not to let time pass by without addressing your needs with regard to your marriage and relationship. If too much time passes, infidelity, addictions and bad habits can form as well as resentment.
Coping together is key so you can openly discuss the burdens, stress, and hopes for the future. Time together can help build and strengthen the relationship. Without coping together, the disengaged spouse will become even more distant, shattering the relationship before you know it.
Burnout can come on slowly without even noticing.
Burnout is like a lightbulb that begins to dim because it was left on too long. The bulb can only remain on for so long until it dims and eventually shuts off completely. This metaphor can be used to illustrate caregiver burnout. Caregivers can only give for so long without support and rest before they begin to experience burnout and depression. Signs of burnout indicate the need for more skills and support to cope well in this situation.
Know that there are ways for caregivers to cope, stay strong and motivated as they watch their child thrive and enjoy life, regardless of their challenges. Make a plan for you and your family today so everyone gets the help and support they need.
Set up a consultation with Dr. Musarra to discuss strategies, resources, and goals to achieve the most inclusive environment for all of your children. You can reach Dr. Musarra by email at nancy@drnancymusarra.com or by clicking the contact form above.
