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An Interview with Jill Kagan

Jill Kagan:   Absolutely. It is really very critical. We have learned from a little bit of research that is out there that what family caregivers do with their time is very, very important to how effective that respite will be. The goal really is to reduce any stress levels that are there and it is difficult to reduce stress if that time is not meaningful for the family caregiver. Unfortunately, many times respite is used to run around, do errands, and not really escape from the caregiving experience. They are engaging in other caregiving activities. The respite may not be as helpful if they are not able to make the best use of that time in a really meaningful way for them. It is meant to be for the family caregiver and it is really critical to their health and well-being. It is impossible to continue doing caregiving if you are not in a healthy and well-balanced place yourself.
 
Gary Barg:   That is what we always say is job one for any family caregiver—to care for yourself.  Basically, even if you do not want to think about yourself and you simply want to think about your loved one, caring for yourself is the best gift you can give your loved one. You are then rested, relaxed, centered and energized for the next thing that comes up.
 
Jill Kagan:   Absolutely. I could not agree with you more.
 
Gary Barg:   One of the things I am so thrilled with that you have done in the National Respite Coalition and ARCH National Respite Network is to actually get Washington involved. I remember all the work that you put into getting the Lifespan Respite Act signed into law in 2006. Where are we on getting governmental support for respite?
 
Jill Kagan:   We have really come a long way in the last decade in educating policymakers about how central respite is to arranging comprehensive support services for family caregivers. I have to say it is still one of the very few bipartisan supported efforts in Congress. We are very, very proud of that. With the tiny little bit of money that congress has appropriated for the Lifespan Respite Program, we now have 30 states and the District of Columbia that have Lifespan Respite systems up and running. We are very, very excited about that. We expect that there may be some new grants awarded this spring as well even though you have all been hearing about the fiscal cliff and the shortage of funding in D.C. We have not escaped the effects of that fiscal cliff yet, but because this program has such great bipartisan support, we anticipate that funding will continue.
 
Gary Barg:   I think it is not a very easy thing for people to understand that if you are not caring for yourself, you are not in any position to care for your loved one. So much of the pressure from the healthcare system of hands-on daily caregiving for our ill citizens falls on the shoulders of the families and friends. We tend to take ourselves out of the circle of care and just forget our needs and we cannot do that. As I said, that is why I have always been such a huge fan of respite being one of the things that caregivers first learn to do. What are the different respite options that some of your state networks have come back and shared with the other states involved in the network?
 
Jill Kagan:   That is also a very exciting development in that folks are relying on the traditional methods of respite, but also really exploring new and innovative ways to provide respite. There is a great focus on expanding and improving volunteer respite services, whether it is through the faith-based community or with other volunteer organizations. There has been a very big movement towards what we call consumer directed or participant directed respite where families are given the financial support to select and hire and train their own respite providers from their own trusted community. You have a family member or a friend or a neighbor that you have been hesitant to ask for help; but if you have a little bit of funding to offer them, you are more likely to reach out and seek that help. There has been a very big movement in that direction. It also helps extend the funds a little bit further.