Caregiver Well-being

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It is easy to let personal well-being become a low priority—for any of us. You may feel that it is selfish to do things for yourself when others need you, but your physical and emotional health is important too. There may well be times when it really is impossible for you to make yourself the priority, because you don’t have the time, or support, or both. This is being realistic. Feeling guilty for that, or feeling guilty when you take (or make) the time, is not helpful. Your well–being requires self-compassion.

Your Team:

Psychologist

A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.

Social Worker

A trained professional who works with people, groups and communities to help them better their lives.

Chaplain

A member of the clergy who is responsible for the religious needs of an organization and/or its constituents.

Spiritual Leader

An individual who leads and/or guides individuals or groups coping with life experience and challenges.

Primary Physician

A medical professional who practices general medicine.

Nurse

A person trained to care for the sick, especially in a hospital.

Nurses’ Aide

A person who assists professional nurses.

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.

Having a child with complex medical needs means that 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. When your time and energy are so focused on caring for others, the very idea of self-care may seem self-indulgent. Any concerns you have about not being able to attend to all of your responsibilities may compound this feeling and increase your concerns about the prospect of self-care. But when looking after yourself is possible–when you have the time and support you need–you will likely find that doing so is also taking care of your family.

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.

“The concept of self-care means different things to different people … it is unique to each person’s needs. The important thing is to develop an awareness of your needs, and to strive to fulfill them in whatever way is doable, manageable and attainable for you.“

– Barbara, parent of Jake

Ideas for Self-Care

Most parents caring for children with medical complexity 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 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.

Attending to your well-being doesn’t need to take a lot of time or expense. 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: Eating healthy food, even 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. But consider: when your child is in the hospital, there are nurses and aides whose job it is to keep your child safe. You will likely come to trust 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.