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An Interview with Jill Kagan

Gary Barg:   Creating that personal network makes respite more individualized.
 
Jill Kagan:   Absolutely. Family caregivers can select whether they want in-home respite or out-of-home respite. If they want to use adult day care or another community-based program, they have the freedom to do that with the dollars they are given through the consumer directed programs. Really, again, that will make respite more meaningful.  For me as an individual, if I can select the type of provider I feel most comfortable with and it is available when I want to have respite—in the evening or on the weekend, I have a little bit more control over that and it will make the respite more enjoyable and more meaningful and, as a result, more likely to be used.
 
Gary Barg:   To share some of these lessons, you actually have annual conferences that are held in different states every year, don’t you?
 
Jill Kagan:   Yes, we do. Each of our 30 State Lifespan programs works very closely with community based partners through a State Respite Coalition. We have affiliated with ARCH State Respite Coalitions that either work independently or, if they are in a state with a licensing program, work very closely. We partner each year with one of those State Respite Coalitions to hold a National Respite Conference. We very much welcome and encourage family caregivers to participate in those events. We usually offer respite in some form through the conference and have a family caregiver track. Many family caregivers use the conference itself as respite just because they have a wonderful time networking with other family caregivers and learning about what to look for in respite and other services. Respite can also be a tremendous link to other services that family caregivers may want to utilize, but they are so stressed or so busy that they do not even have a chance to step back and look at what other supports might be out there for them to access. Respite provides that bridge or that link to those other support services. That is another reason that it is so important. They can learn about these things at our national conferences.
 
Gary Barg:   It is amazing; respite is such an individual thing. I met a gentleman at one of our Fearless Caregiver Conferences who, when his wife was in adult day, started learning art. He just thought at 70-something years old, he wanted to learn how to paint. His wife has subsequently passed and he started a second career as an artist. He goes around to all the different shows. Respite allowed him to expand part of his life that he never thought he would do.
 
Jill Kagan:   We hear about that so frequently, Gary. In fact, the Tennessee Respite Coalition, which is very creative in the outreach that they do in communities, asked folks to send in videos of what their respite meant to them and what they did with their respite time. They posted some of those videos on their Web site; it lets other family caregivers know that almost anything you want to do with your respite time is meaningful and you should pursue it. There are many different opportunities out there. It is not just the time to run to the doctor or do your errands, but it could be time for you to really not feel guilty and take some time for yourself.
 
Gary Barg:   What a great point, to get the guilt out of respite and make people understand that your caring for yourself is job one. I remember the first time my grandfather went into adult day and he was having a lovely time. My mom, who had been caring for him, went to the beach. I thought this was great until I found out she laid out a towel and then spent the whole day calling the adult day facility asking how Grandpa was.