A psychologist, social worker, chaplain, spiritual leader or your primary physician can provide a space for talking through issues and concerns and help you develop ideas and strategies for incorporating self-care into your day-to-day life. During hospital stays, a nurse, nurses’ aide, or child-life specialist may be able to watch over your child while you take a quick break. A trusted friend or family member can also provide periods of respite.
Caregiver Well-being
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It is easy for a caregiver to let personal well-being become a low priority. Your child may have urgent and/or chronic and complex medical needs. You must manage appointments and clinicians and learn new information about the disease and medical treatment—all while tending to other family members, work and/or other responsibilities. You may feel that it is selfish or impossible to do things for yourself when others need you, but your well–being is important too. When you care for yourself, you will be more resilient and better able to care for your child and family.
Your well–being as a caregiver requires self-compassion. It is not an exaggeration to say that you can’t possibly get to everything that needs to be done in a day or week. Things will slide. Rather than fixating on a long to-do list, give yourself credit for what you have accomplished in your day–no matter how small. Doing so will allow you time and space to attend to your own needs.
At times you may feel guilty about leaving your child, and also feel guilty or sad about not being able to spend more time with others in your life. Taking time for yourself may feel selfish, compounding any feelings of guilt. It is easier to commit to self-care when you are able to acknowledge your feelings and needs. For example, if you are angry, there may be underlying feelings of resentment, disappointment or grief. As you examine the emotions that arise, you will gain understanding of what you can do to help yourself. And remember: allowing time for yourself will help you be calmer and a more patient caregiver. This idea can help you see self-care as a priority and not an indulgence.
Focus on You
When your time and energy are so focused on caring for your child, the very idea of self-care may seem self-indulgent. Any concerns you have about not being able to attend to others in your life may compound this feeling and increase your sense of guilt at the prospect of self-care. But self-care is not selfish. Allowing time for yourself will help you be calmer and more patient. Ultimately, caring for yourself is caring for your family.
Perhaps you are concerned that self-care is too expensive or time-consuming. You may feel that your time (or money) is better spent doing other things. In fact, attending to your well-being doesn’t need to take a lot of time or expense. As you examine the role of self-care in your life, it is a good idea to ask yourself, “How am I doing? How am I really doing?” Try to label your feelings accurately, so that you can deepen your understanding of your feelings and your needs. If you are angry, is it just that? Or could your feeling best be described as resentment, disappointment, grief? Naming your emotions is one pathway to identifying what you can do to help yourself feel better.
Most parents of children with SNI need consistent high-quality respite care, allowing them to truly rest and reset. Unfortunately, respite care is often not an option. Given this reality, you may need to be creative in order to carve out small moments of self-care. Even a few minutes a day focusing on your own well–being can be rejuvenating. Over time, these little bits of rejuvenation, strung together, can help you maintain the level of physical and mental well–being that you need to be present and to keep going.
Ideas for Self-Care
The goal is to find simple and easy ways to incorporate self-care into your day-to-day routine. Sometimes it’s the simplest act that gives us renewed energy. What do you enjoy or wish to explore? Some options:
- Intellectual stimulation and creative outlets: Reading and/or participating in a book club, starting or pursuing a hobby
- Physical movement and exercise: Walking, hiking, biking, dancing, working out
- Connecting to others: Meeting or talking with a friend, volunteering, online or in-person support groups
- Emotional support: In-person or telehealth therapy
- Rest and rejuvenation: Napping while your child does, eating healthy food, or even just getting showered and dressed for the day
Entrusting Your Child to Others
You may believe that there is no one else to care for your child and that you are the only one who can. You may also believe that your child will feel abandoned if you leave them–even for short periods of time. Having these beliefs is natural and understandable. However, it can be helpful to consider small ways to shift your thinking. If your child is in the hospital, there are nurses and aides nearby whose job it is to keep your child safe. You will likely come to know and trust them so that you can comfortably leave the bedside for short periods of time. If your child is at home, you may have a caregiver or family member who is home at the same time. They can keep your child safe while you take a break and do something for yourself.
Work as Self-Care
Work can also be a form of self-care. Most of us work because we need to, or want to, earn a living for ourselves and our families. But for many, work is also an important part of our identity. We value the contributions we make; we value our colleagues and collaborations. Work also presents opportunities to learn new concepts and new skills and to express ourselves outside of being a parent. These can be forms of self-care, too.
