Where’s the RESPITE?

Respite Care

Where’s the RESPITE? I don’t think there’s any anywhere…

This line used to run through my head just about every weekend! I said it to myself to whoever’s around to hear it. I said it in the same voice as the elderly actress, Clara Peller, that said the famous line from Wendy’s commercial: “Where’s the BEEF?” The difference is that I said “Where’s the RESPITE?”. At the very end of the commercial, after repeatedl asking, “Where’s the Beef?” she says… “I don’t think there’s anybody back there!” So, I switched it to say…”I don’t think there’s any anywhere.”

As parents of special needs children, where do we go to find respite? Where is it? How do we go about getting it? My daughter is not as severe as some children. She is not housebound or in a wheelchair, her behavior issues are moderate. She can walk and talk and does toileting herself. In a lot of ways, others may say I “have it made” compared to what they have to go through. But, this is not about comparison to what others deal with verses what I may be dealing with. The bottom line is that as parents and primary caregivers to our children, we need a break. We need time away…..a respite!

How do we go about getting R E S P I T E? With that being said, my mind immediately breaks into the song sung by Aretha Franklin: R E S P E C T.  When I sing it in my head I replace the spelling to with R E S P I T E, then on with the song…find out what it means to me. Oooh Just a little bit, Oooh just a little bit.

I decided I wanted to find out more about respite, was I entitled? How does one go about getting respite? I know I need it. I know my friends that have special needs children need it. But how do we go about getting it? I sometimes feel like a bad mother, or feel guilty if I say out loud (at the top of my lungs) I NEED A BREAK! Is my sanity important? I set out to find the answers to these questions and much more. While doing my research, I stumbled across a wonderful website: Helpguide.org. Helpguide’s mission is to help people understand, prevent, and resolve many of life’s challenges. They did that and more by providing answers to all of my questions and much more. They said it better than I could ever put into words. So, I requested permission to reprint the following excerpts from their site.

What exactly is Respite Care?

Respite care is short-term or temporary care that helps families take a break away from the daily stresses, recharge and rejuvenate. Respite care is essential for your health and a vital part of the overall support that families need to care for their child with a disability.

Respite care basics

Seeking support and maintaining one’s own health are key to managing the caregiving years. Using respite care before you become exhausted, isolated, or overwhelmed is ideal, but just anticipating regular relief can become a lifesaver.

Respite can take many forms, but boils down to two basic ideas: sharing the responsibility for caregiving and getting support for yourself. Finding the right balance requires persistence, patience, and preparation.

Planning your relief

Planning starts with analyzing needs…both yours and your loved one’s. As a caregiver, is support what you need most? Some free time? Help with transportation? Keep track of your daily activities then make a list of the areas and times when you most need help.  Identifying your loved one’s requirements, abilities, and preferences will also help you find the right match. Are social activities primary? Need assistance with walking, eating or medications? Mental stimulation? Exercise? Answering these questions will help you determine which respite options to pursue.

Engaging family members in respite care

Family members and friends may be able to help out while you run an errand, take a break or even go on vacation. However, just as the burden of caregiving is often more than one person can handle – it can also be a tough process for families to share.

Even the healthiest families can be severely stressed by ongoing care, and the division of labor is frequently lopsided. You can encourage support and participation by:

• Talking openly and regularly. Keep everyone up to date on your loved one’s needs and condition. Family members who don’t share the day-to-day caretaking experience may not fully appreciate the situation.
• Encouraging family members to evaluate what they can reasonably and honestly do. Changing roles and varying resource levels can impact family involvement. Welcome different viewpoints, accept limitations, and be willing to try alternate strategies. Share your list of needs and take advantage of all offers to help.
• Recognizing your own feelings and discussing disproportionate tasks. Harboring resentment when you need more help can lead to your burnout and impaired health. Ask directly for concrete support and specific time commitments. Consider establishing an online calendar to organize relief and reconfirm schedules.
• Using technology to bridge distances. Try free video conferencing services to hold family meetings at times that work for everyone. Create a web-based community to share updates and explore options.
• Exploring a family respite cooperative. Consider trading respite services with other caregivers and their families.  Pooling resources can encourage involvement, reduce costs, and increase flexibility.
• Participating in support groups. Learning how other families cope can suggest new options and provide reassurance.  When siblings are unable or unwilling to share the load, peer support can be invaluable.

Understanding the Emotional World of Children

Coping with the Life You Never Imagined

Developing Your Own Network

Paying for respite care

In today’s challenging economy, you may think respite services are unattainable. However, thinking creatively can uncover valuable resources:

• Ask local church groups many provide support for kids with special needs through respite nights and volunteer programs. Or ask if they might suggest volunteers  that could sit with your loved one while you take a walk, watch a movie, or complete an internet workshop.
• Trade services with other caregivers. When a loved one is able to change locations for an afternoon, alternate weeks caring for both recipients at once.
• Contact area high school counselors. College-bound students often need community service experience and are available afternoons and evenings.
• Look into Traditional funding sources for respite care: Insurance, SSI, Medicaid, Medicaid Waivers, Foundation Grants, Nonprofit and Disability organizations and State Agencies.
• For more information, please refer to the following resources: National Respite Locator Service, Autism Society of America, The Arc, Easter Seals, United Cerebral Palsy and Family Caregiver Alliance.

Strategies for successful respite care: 6 Tips

Finding and implementing respite care sounds like a lot of work! Relief and revitalization is not just important for you, it benefits all involved in the caregiving process.

Remembering the benefits and following these six tips can ease the process:

• Plan and schedule frequent breaks. Respite is not just a service-it is an outcome that requires regular relief.
• Use checklists to teach providers about your care recipient’s schedules, likes and dislikes. Offer suggestions for handling behaviors.
• Make back-up plans. Always keep a list of alternate providers and resources. Unplanned emergencies should not prevent you from taking care of yourself.
• Evaluate often. Observe your care recipient before and after respite sessions. Ask for brief updates and more detailed reports regularly.
• Expect changes. Respite care is a process that often requires fine-tuning. Anticipating and accepting changes in personnel or programs can keep you from becoming discouraged.
• Attend your support group regularly. Structured and informal groups allow you to meet others in situations much like yours. You can talk, vent, laugh, and exchange tips with people who understand. If you can’t easily leave home, online communities, message boards and forums can provide much-needed support.

I feel relieved! Just, knowing that it is O.K. to ask for R E S P I T E ! That it is an important part of my daughter’s care/support plan that needs to be included, implemented, and makes me feel better. Now the song that’s playing is in my head is “Celebrate Good Times, Come On!”

For more information, please refer to the following resources:

National Respite Locator Service,

Autism Society of America, The Arc, Easter Seals, United Cerebral Palsy and Family Caregiver Alliance.

Excerpts used with permission from Respite Care. Visit http://www.helpguide.org/elder/respite_care.htm to see the full article with links to related articles. © Helpguide.org. All rights reserved. This material is for information and support; not a substitute for professional advice.

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