4 Reasons Caregiver Respite Is Important

Respite is frequently one of the first services offered to families once their baby is diagnosed with one or more disabling conditions. Sometimes parents don’t want that service. They might have close family nearby who can give them a break now and then, and feel they don’t need the respite. I know, because over 24 years ago when my daughter was diagnosed with Aicardi syndrome and began receiving services through our state’s division of developmental disabilities, I didn’t want respite. The thought of leaving my fragile baby in the care of a stranger was frightening.  At the urging of the program social worker, and after speaking to some parents who were using the respite program, we decided to give it a try. I am glad we did, and in retrospect I can see how important it was for our family, for our daughter, and for me.  Here are four ways you can benefit from respite.

• The Mighty’s Caregiving Toolkit

1. Reconnect with your spouse.

Although it may seem that only a few hours a month is not enough time to do anything, it is enough time to reconnect with your spouse.  A “date” with your partner doesn’t have to be anything elaborate, nor does it have to be in the evening.  It can be going for coffee in the afternoon, out for a drive, or to the library together.  The point is to be together without any interruptions. Even if you spend the whole time talking about your child, it’s good to be able to express your feelings and discuss your ideas for dealing with things together. Of course, you may want to talk about other things, reminisce or just listen to music. Whatever helps you feel like a couple again. After all, you may have some trying times ahead and if you already feel connected it might make them a little easier to get through.

2. Give your other children some one-on-one attention.

If you have other children, it is good to give them a little time to be with you where they feel they have your undivided attention. Sometimes when one child has many needs their sibling can feel forgotten and unimportant. Siblings need to know they are important and can express to you any feelings they might have about how your family functions, but might not feel comfortable doing so in front of their sibling.  It doesn’t have to be anything lavish, or a “let’s sit and talk” kind of thing. The point is to simply give them your full attention for a little while; just coloring together, or riding bikes, going for ice cream or taking a walk are good ways to let them know they are important to you and give them time to open up about their feelings.

3.  Remember who you are.

Besides being a parent, it’s easy to get lost in all the new roles your child’s diagnosis brings you: nurse, therapist, advocate, and teacher may be some of them. After a while you might forget who you are underneath all of that.  You also might get burned out, which might lead to depression, and a feeling of impending doom. When you are switching between one role and another, day and night without a break, it can be overwhelming. Respite can give you time to do something you enjoy such as read a book, meet a friend for coffee, go to the gym, or take a nap.  If you feel the need, it can give you time to see a counselor to learn techniques to deal with thoughts or emotions you may have; sometimes talking to someone with no emotional investment in your situation can be beneficial. Respite hours can give you a chance to engage in an activity you liked doing before your world changed. It can be a tool for self- preservation and personal growth. Recharging your energy is an important part of meeting the daily challenges caring for your child may bring.

4. Your child’s independence.

As hard as it can be to imagine, especially in the beginning, your child needs to be independent of you; it’s an important lesson for both of you to learn.  Perhaps it will never be possible to have complete independence, but even for short periods of time, you and your child need to know that someone else can meet their needs and keep them safe. Whether your respite person is a family member, a nurse, or a health aide from an agency, it’s important for your child to know they will be safe and cared for when you have to be away from them, and that you will come back. It’s also important for you to have the peace of mind that comes from knowing that if you must be away for a little while, your child will be comfortable in someone else’s care. It takes away some of the stress you might feel being separated from your child.

Starting respite early in this different kind of life also lays the foundation for schooling.  If you choose to send your child to school rather than homes chool, you both need to be used to being apart for a few hours with someone else giving your child care. If you home school, they’ll still have therapies and other activities where you may not always be present. Giving your child the chance to meet people on their own terms can help you both grow and thrive. We all need to have contact with various types of people in life, and using respite programs can be a safe way to help children experience that.

In the beginning, it can be difficult to imagine giving your child’s care over to someone else for any period of time for any reason. Using respite services can be a part of giving good care to them. By giving you a break, respite can help you find perspective about your situation and see the good things, rather than focusing on the practical ones. Caring for yourself and other family members can reduce everyone’s stress level and make it easier to deal with the frustrations and challenges that are part of family life with a child who needs extra care, and it can help you find the joy your child brings.

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Thinkstock photo by Katarzyna Bialasiewicz.