What can I do about stress? 

Caring for a child with medical complexities can be deeply rewarding but also incredibly stressful. While your focus is on providing the best care for your child, it’s just as important to manage your own stress for your own physical and emotional well-being. 

Why am I feeling more stress than usual? 

Stress happens when we feel overwhelmed by the demands of life, especially when caring for a child with special medical needs. It can happen when we’re faced with unexpected challenges or when we feel a lack of control over the situation. Everyone handles stress differently. The amount and kinds of stress you may feel depends on things like genetics, past experiences, your personality and life circumstances. 

What effect does stress have on me? 

Stress triggers a physical response in the body. It makes the body release hormones that prepare us to react quickly. This is called the “fight or flight” response. 

This response can be helpful in short bursts. But long-term stress can be bad for your health and lead to anxiety, exhaustion and burnout. Ongoing stress over a long period of time can also hurt your ability to provide the care your child needs. This means that it’s very important to manage stress effectively. 

How does stress work? 

Understanding how stress affects your body can help you manage it. Stress triggers systems in the body that can lead to a higher heart rate, muscle tension and other symptoms. These reactions can be helpful in short term, high-stress situations. But long-term stress can lead to chronic health problems like sleep issues, fatigue and weakened immune function (making you more at risk for getting sick). 

Stress 

Stress operates through a series of stages. It begins with a stressor (something that creates or triggers stress). 

The first trigger could be anything from: 

• Balancing your job and home life 
• Making sure you don’t miss any doctor’s appointments 
• Feeling worried about your child’s sickness 
• Seeing your child struggle with symptoms 

 Thoughts and feelings 

After something stressful happens, you start thinking about it and having feelings. Here are some things you might think: 

• “I can’t handle this.” 
• “I wish this would just disappear.” 
• “How will we pay for all this?” 
• “Why did this have to happen?” 

You might also feel worried, nervous, sad, mad, guilty, frustrated or scared. 

 Behaviors and habits 

Thoughts and feelings like this often lead to certain behaviors and habits as they grow stronger and happen more often. These can come out in many ways, like: 

• Forgetting things 
• Struggling to finish tasks 
• Ignoring or avoiding problems 
• Getting really mad easily 
• Drinking or smoking more than usual 
• Not wanting to eat or eating too much 

 Physical symptoms 

These behaviors and habits can take a toll on your physical health. This can lead to seeing a range of symptoms, such as: 

• Always feeling tired 
• Having trouble sleeping 
• Getting headaches 
• Feeling pain 
• Having a stomachache 
• Getting skin rashes 
• Not feeling interested in sex 
• Having trouble focusing 

How can the STOP method help me manage my stress? 

The STOP method (Stop, Think, Observe, Proceed) is a simple and effective tool for managing stress. 

Here’s how it works: 

Is it OK to take care of myself while I’m caring for my child? 

Caring for a child with complex medical needs is a serious responsibility that can often feel overwhelming. It’s important to remember that you have rights as a parent in this role. The “Caregiver’s Bill of Rights” reminds you that taking care of yourself is not selfish. It’s necessary in order to provide the best care for your child. The Bill highlights key rights that parents of children with medical complexities should keep in mind. This includes the right to ask for help, to set personal boundaries, to express your emotions and to prioritize your own well-being. 

By acknowledging and respecting these rights, you strengthen your ability to care for your child. You also make sure that you are maintaining your own health and resilience. 

What is the “Caregiver’s Bill of Rights”? 

Caring for yourself is a very important part of being able to care for your child. Reading and thinking about the “Caregiver’s Bill of Rights” can help remind you of the importance of your own well-being and give you some tools to find your way through the challenges of caregiving. It’s a daily reminder that your health matters and that taking time to care for yourself will benefit both you and your child. 

I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one. 
I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength. 
I have the right to maintain parts of my own life that do not include the person I care for, just as I would if they were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself. 
I have the right to get angry, be depressed and express difficult feelings once in a while. 
I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter if they know that they’re doing it or not.) 
I have the right to get consideration, affection, forgiveness and acceptance for what I do for my loved one, as I offer these in return. 
I have the right to take pride in what I’m doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one. 
I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help. 

(Author unknown)