Over the years I have received countless email updates from Jill Kagan Director of ARCH National Respite Network and Resource Center based in Annandale, VA on how she and her organization are getting support from various political figures and national organizations. Her passion is to help family caregivers find the best and most accessible respite resources for you. Here’s a note from one of her latest emails:
2015 Caregiving in the U.S. 2015
The National Alliance for Caregiving and AARP released the 2015 Caregiver Survey results in June 2015. The survey revealed that an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months. They found that while there is a profile of a typical caregiver, caregivers on the whole are becoming as diverse as the American population and include more men and younger “millennial” caregivers. Still, 85% of family caregivers are not receiving respite. New methodologies were used so comparisons with previous surveys are not possible. While caregivers of children were included in prevalence numbers, these caregivers were not included in any further analyses.
Recently, we had a phone interview and this is what Jill had to say:
1) What is Respite?
The Lifespan Respite Care Act defines respite as “planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult.”
2) Why is important for family caregivers to include Respite in their caregiving role?
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 spouse, or parent or child at home and living in the community regardless of their age or condition. Many derive great joy and satisfaction 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. At the same time, for significant numbers of family caregivers, the physical and emotional effects of unrelenting high stress levels can result in poor health as well as serious stress and depression. One thing we are certain of, they cannot continue to do this alone without support. Respite can also be an important bridge to support services and has been shown to improve family caregiver well-being, restore family stability and help avoid or delay much more costly out of home placements. Yet 85% of family caregivers across the country are not receiving respite! To read more about why respite is important and how to make the most of your respite time, take a look at the ABCs of Respite: A consumer guide for family caregivers.
3) Please tell us briefly about ARCH? What are some goals for ARCH?
ARCH’s mission is to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums. The ARCH National Respite Network includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community, the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels, and the Lifespan Respite Technical Assistance Center which is funded by the Administration for Community Living in the US Department of Health and Human Services.
4) Where on your website is the easiest place for family caregivers to find a place that offers respite?
Family caregivers can search, at no charge, for respite services at the National Respite Locator Service athttp://archrespite.org/respitelocator . If your state has aLifespan REspite Program or a state respite coalition, that is another great place to turn for respite information. Funding options? To access funding and eligible bity information as well as links to other caregivers supports, visit State Respite and Caregiver Resources Fact Sheets at http://archrespite.org/respitelocator/respite-locator-service-state-information-map
5) What resources do you consider essential for family caregivers to include in their tool kit?
Family caregivers should be sure to consider respite services much earlier than they think they will need them. Respite will be most helpful if you use it before you become exhausted, isolated, and overwhelmed by your responsibilities. It is also a good idea for family caregivers to plan your respite time in advance so that they can engage in activities that are truly meaningful to them.
6) November is National Family Caregivers Month. This year’s theme is Respite Care for Caregivers Visit the Caregiver Action Network for the kit for more information.
7) How can a family caregiver celebrate it?
Arrange some respite time for yourself! Check with your state respite coalition to see what special events they might have scheduled for you in November!
This is the season to make a change including yourself in the care equation. Here are some other ideas on how to find the best respite situation for you and your loved one:
1) Find a friend who offers to help and means it. Be bold and speak to them about your wishes.
2) Find a home care company; their professional caregivers understand how family caregivers need a break.
3) Find your local Alzheimer’s Association office. They may offer complimentary respite with trained professional caregivers.
4) Find the closest Assisted Living Facility and speak to the marketing person about respite. Often they have rooms fully furnished for respite situations.
Take the leap and believe that when you are kind to yourself you will be kind to others.