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Asking for Help is a Sign of Strength

Most family members who provide care at home to a loved one are doing it just for that reason – out of love and caring. They want to be able to keep their family member at home and living in the community regardless of their age or condition.  Great joy and satisfaction can come from the caregiving experience. Some studies have even shown that despite high levels of stress associated with continuous caregiving, family caregivers derive spiritual, emotional, and sometimes even physical benefits. Caregivers may report that caregiving gives their lives meaning, produces pride in their success as caregivers, and is gratifying in that it allows them to give back to someone else. More often than not, however, the continuously high level of stress resulting from the demands of continuous caregiving can take its toll.  By providing a break from the ongoing stress of caregiving, respite can help improve your physical and emotional well-being and protect your quality of life as a family caregiver.

To be most effective, you should consider respite services much earlier than you think you will need them. Respite will be most helpful if you use it before you become exhausted, isolated, and overwhelmed by your responsibilities. Give careful thought to how you want to spend your respite time. To maximize the benefits, use your respite time to engage in activities that are enjoyable, purposeful, and meaningful for you. If the respite experience is also safe and enjoyable for the care receiver, you will have greater peace of mind and will get more out of your respite time.

Respite is most effective when combined with other support services and assistance, but don't wait to take your break. You may also benefit from additional financial support, education, emotional and social support, and a sense of belonging with others, but before you can seek out those services, respite will give you a chance to step back and recharge.

Sometimes, you may need respite in emergencies to deal with a personal health crisis, housing or job loss, or other immediate situation that might put the care recipient in harm’s way. Emergency or crisis respite may be more difficult to find, so familiarizing yourself with providers who might offer emergency respite or even registering in advance with such providers, is important.

If you are not yet receiving respite, you are not alone. Nearly 90% of the nation’s 62 million family caregivers do not receive respite of any kind because they don’t know it exists, don’t know where to look for it or how to find it, can’t find providers they feel comfortable with or are available when they need them or for extended or overnight care, or because they don’t have the financial resources.

The ARCH National Respite Locator Service can help you find respite services that you are comfortable with and ways to help you pay for it. You can search in your state and local community for respite providers or community or faith-based programs that will offer you a temporary break. The search will also provide federal and state funding possibilities if you need financial assistance. 

Respite comes in many forms. It can be provided in-home or out-of-home and each approach has its pros and cons. In-home respite provided by volunteers or neighbors, professional home health agencies, skilled nursing or independent providers, may provide a more comfortable setting for the care recipient who does not have to adjust to a different environment, and you may be more comfortable if the care recipient does not have to leave the home.  Home is already equipped for any special needs the care recipient may have, and transportation barriers for the care recipient are eliminated.  Finally, the cost is relatively economical (especially if you hire and train your own provider in a consumer-directed model).

Out-of-home respite, such as adult day care, assisted living or other community-based programs, provides an opportunity for the care recipients to be outside the home. It gives them an opportunity to experience new surroundings, different expectations, peer relationships and even cognitive and emotional stimulation. Families are free to enjoy time in their own home without the constraints of constant care, and they can devote more attention to other family members.

For more information on when to seek respite, how often, and how to find and choose a provider, ARCH’s consumer guide, the ABCs of Respite, has a wealth of information to guide you through the process.  ARCH has also developed National Respite Guidelines to recommend the staffing, training and other program components you should look for in a quality respite service.  To read more about the specific respite needs of individuals with neurological conditions, including stroke, follow this link.

Your state may have a federally funded Lifespan Respite Program or State Respite Coalition that can offer you even more localized and individual assistance. A State Lifespan Respite program offers a seamless system to overcome respite barriers. Through these coordinated systems of community-based respite services, these programs are charged with providing planned and emergency respite services; recruiting and training new respite providers and volunteers; and linking family caregivers to providers, payment resources and training. Such programs are up and running in 30 states and the District of Columbia. The programs have limited funding, but they are doing much to help raise awareness about the importance of respite and to help expand or enhance existing respite services.

Asking for help is a sign of strength. Don’t hesitate to seek the support and respite that you need to keep your loved one at home and ensure your own health and quality of life.

By: Jill Kagan, MPH, Program Director, ARCH National Respite Network and Resource Center

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"Respite can help improve your physical and emotional well-being and protect your quality of life as a family caregiver."

What is Respite Care?

Respite care is a short-term or temporary form of assistance for those providing care to individuals that may otherwise require placement in a nursing facility. By providing a break from the ongoing stress of caregiving, respite can help improve your physical and emotional well-being and protect your quality of life as a family caregiver.

  • To be most effective, you should consider respite services much earlier than you think you will need them.
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