Many families are blessed with children with special needs. Caring for these children is enormously rewarding, but it can be emotionally and physically draining as well. So who takes care of the caregiver? Caregivers include not only parents, but brothers, sisters and grandparents. Our main concern for the caregiver is – if you don’t take care of yourself, how can you take care of them?
What is Respite?
Respite is a GIFT OF TIME. Respite care is designed to help families of children with special needs. It is a temporary break from the daily responsibilities of care giving It gives the regular caregiver some much-needed time off, allowing them to get out of the house (or finish some home chores while someone else is being the responsible caregiver), visit with friends, have quiet time alone, go to the store or library, run errands, have an evening out, or even have a weekend getaway. Respite care comes in many forms:
Why is Respite so important?
Respite care is a NECESSITY, not a luxury, no matter what form it takes. Caring for a child with special needs presents additional challenges that go beyond the everyday stresses of being a parent. Respite supports parents and primary caregivers so that families can keep their child living with them in their home. Respite care is critical to the well-being of both the caregiver and care recipient for a number of reasons:
- Managing responsibility: No matter how much love or dedication a caregiver feels toward their child, the burden of long-term caregiving is too great for one person (or a couple) to successfully manage on their own.
- Stamina: Caregiving requires time and energy, and respite lets the caregiver rest and restore their energy.
- Physical & mental health: Caretakers of children with special needs often face significant stress as a result of balancing the needs of their child with the needs of other family members and themselves, leading to physical and mental health problems. Respite provides much-needed stress relief, enabling the caregiver and family to recover and build resilience to continue providing optimum care.
- Burnout: Caregivers who are overwhelmed with stress will experience burnout, leaving them unfit and incapable of providing sufficient care.
- Quality care: Caregiver burnout can lead to neglect or abuse. Relieving caregiver stress helps maintain optimum care.
Why is it so hard for caregivers to take respite?
Caregivers may not regularly take the time to enjoy the relief for multiple reasons:
- Unaware of caregiver roles: Caregiving is far too big a task to undertake alone, particularly for those who are assisting children with special needs. The belief that caregiving is simply "my job as a parent" or "is no big deal" diminishes the demands of the caregiver role and can lead to neglect of the parents' stress and well-being.
- Unaware of need: Many caregivers do not realize they need respite until they have reached the breaking point. To be most effective, respite services should be considered early on and used before the caregiver becomes exhausted, isolated, and overwhelmed by their responsibilities. Again, prolonged caregiving can lead to significant physical and mental illness as well as interpersonal, occupational, and financial problems.
- Unaware of opportunities: Many organizations and nonprofit charities offer free respite services and gifts, but education is lacking to help families learn of these opportunities.
- Self-reliance: Some caregivers have a hard time admitting they need help or accepting help from others. Many people think asking for help is a sign of weakness, but that isn't true. Asking for help is a sign of strength, because it acknowledges the difficulty of the situation and it requires putting aside pride and acting in the best interest of your loved one and yourself (which isn't easy to do).
- Guilt: Some caregivers feel guilty even thinking they can't juggle all of their responsibilities themselves.
- Doubts and excuses: Caregivers can have many concerns about respite that will prevent them from using its benefits. They may think that no one else can do their job as well as they can, worry that something will go wrong while they are away (and that it will be their fault), or that it's not worth the effort to arrange for respite care.
How is Respite Arranged?
- Guard your respite time. You must set aside the time to care for yourself. Postpone or delegate other demands that inhibit this essential time of self-renewal and revitalization.
- Assess the care recipient's needs. The level of disability and necessary level of care will help determine what kind of respite care to choose: informal volunteer v. paid professional, in-home v. out-of-home care facility, and skilled care v. companion services.
- Select a quality respite provider. Do not assume that a particular caregiver or agency is qualified to provide respite services, whether or not the services are paid. Get to know prospective providers before choosing them. Put expectations and care responsibilities in writing so all parties are clear.
- If using an agency or registry, verify their quality and services. Be sure they are state-licensed and have general liability and worker's compensation insurance for their caregivers. Determine whether they are an agency or registry - agencies hire their own employees and conduct background checks, while registries hire independent contractors who are not directly employed by registry. Learn how they screen, train, and supervise their caregivers, including how they handle emergencies. Learn about their costs, range of services, and who to contact with questions.
- Ask individual caregivers about their qualifications. Ask about caregiving and respite care experience and training, as well as their interest in the job. Ask about their availability and back-up should they be unable to provide care when scheduled. Ask about their last job and why they left it. Verify they are insured, ask for references, and conduct a criminal background check.
- Prepare the respite provider. Parents are the experts on caring for their children, and they are responsible for preparing the respite provider to meet the individual needs of their child. Important topics to cover include medication, seizures, adaptive equipment, discipline/behavior, allergies/diet, naps/bedtime, toileting/diapering, communication, emotional needs, recreation activities. Preparing a fact sheet for the provider to reference at a moment's notice would be helpful. Click here for a sample Respite Care Fact Packet.
- Respite follow up. Talk to the respite provider to see if everything went smoothly and identify any problems that need to be resolved. Be sure to also take the time to talk to and observe your child after the respite care experience to make sure he or she was comfortable. Some questions to ask: "Tell me about your time with _____?", "What did you do?", "Did you like _____?", "Would you like to spend time with _____ again?"
- Seek financial help if needed. Costs vary for paid respite care. Several state and federal programs may help with fees, and long-term insurance may cover some costs.