Gary Barg:  We were so happy that you were able to join us at the Fearless Caregiver Conference in Port St Lucie, Florida this past December. You mentioned that after hearing the family caregivers in the morning Q&A session, you threw out your speech and spoke extemporaneously. I was wondering what you heard from the caregivers that prompted you to do that?

Kathy Greenlee:  There was one woman who was caring for her loved one, who stood up and was in tears about the struggle and the isolation. That seemed to be a thread, because after she did that, another woman in the audience physically got up and reached out to her and said, “I was isolated, I was you and I am not anymore.” 

This all happened while you had the panelists up on stage and one of the professionals said so much of her job is to combat that particular problem of isolation, of reaching out to caregivers and making sure that they get both emotional support and connection to the different services that are available.  You could just see that theme, kind of as a thread, regardless of who you were in the audience.

GB: I see that with rural events as well as with events like this, and even in much larger cities.  People will stand up and say exactly that: I am alone, nobody gets this, and nobody understands what I am going through.  Then they get enveloped by an audience of other people who, as you have said, have walked the walk.

KG:  Yes, it is poignant.  I guess that is the best description for it, because it is both sad and hopeful at the same time.  It is sad that people have to come from that place of being isolated in order to get to a different, better place of having support.  It was a very positive exchange between the people who were attending the conference and then the panelists.  Both sad and happy mixed together.

GB:  What specific support do you see going forward in the Obama administration for family caregivers?

KG:The President is very supportive of families, how to support families, how to support people who are working. A lot of times, the caregiver issue comes up in terms of the struggle for caregivers to both stay at the job and be at home.   I was very pleased that even before I got here to see a letter from Secretary Sebelius to the editor of The Washington Post in response to their magazine article talking about caregivers being the real backbone of our long-term care system. I have worked with the Secretary for a long time. I know her real support for families, for seniors, and her support for allowing people to stay at home for as long as they can. So, I think it is a good mix.

GB:  One of my favorite phrases has always been “aging in place” and I was wondering what your priorities would be with regard to home and community-based long-term care.

KG:    My priority is that it is the first approach for providing long-term care. I have seen some wonderful models for nursing home care; but in talking to seniors, and their family members, I simply know that living at home, aging in place, is the preference.

GB:  In one of your previous professional roles, I know you were the long-term care ombudsman for the state of Kansas. What role does an ombudsman play and why do you think that is important for family caregivers?

KG:  I think the ombudsman role, with regard to family caregiving beyond supporting the resident, is to help the family through the transition from living at home to living in a nursing home. The admission process to a nursing home is overwhelming. So much of the information transfer takes place at a real time of trauma for the family when their loved one is moving into a nursing home. The ombudsmen can really assist the family. I do not see nursing home placement or residency as a failed outcome for not being able to provide services in that community, only the next step because of the needs.

GB:  Funds have been released to support the lifespan respite care program. Can you talk to caregivers about why respite is such an important tool for them?

KG:  What we can do to support families most is to help individuals who want to do this get a break, stay healthy, and have the ability to remain as caregivers for as long as possible. So in terms of talking about respite, we do have to somehow figure out how to explain to people what we are talking about; but it is also a chance to continue the caregiver’s life by having sufficient temporary care for the loved one so that the caregiver also can work or take a vacation or simply have some meaning in their life that is separate from the role of caregiver.

GB: What changes, if any, do you see to the Older Americans Act programs going forward?

KG:  I want to make sure that we always return to address the core services that we are providing under the Older Americans Act and those services are direct services to seniors such as attended care services and nutrition services, and the family caregiver services. I want to make sure we shore those up and have adequate resources there.

GB: What would you say the single most important piece of advice would be for family caregivers?

KG: Call someone. Our responsibility, at the federal level and with our partners in the states, is to be responsive, to have information available on the ground, in the communities. What we need caregivers to do is call and ask what is out there to help me? We need to show up with the answers, with the services to the degree that we can fund them, and the other types of support that the community can provide through other organizations.

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