Interview with Linda Jones, CCAN Director

Linda is President of Health Care Partners, Inc., a home healthcare agency in Southfield, Michigan. This was an interview conducted by NFCA.

Linda, how did you get involved with NFCA?

About nine years back, I was caring for my dad. I remember thinking, "What a difficult job this is and I'm a nurse. How much harder it must be for people who don't have any medical training." I sought out information from the local chapter of the Parkinson's Foundation. That's where I first learned about NFCA.

What motivated you to become a CCAN representative?

I'd been a member for some time before CCAN actually got started and so I had a long history with the organization. I was impressed by NFCA's newsletter, philosophy, their other materials and the energy and passion I sensed in Suzanne and other staff members I spoke with. When information came out announcing the launch of CCAN and asking for volunteers I didn't hesitate to respond. Because I've done so much nursing care over the years in hospitals, oncology care, hospice, and home health care I knew I had valuable information to share. To me, home health, chronic illness, and family caregiving are all integrated, part of a big continuum.

What has been your experience as a CCAN representative?

I love it. I've had so much fun partially because I'm a rah-rah person and I like to try and motivate people, Since I am not presently a family caregiver, own my own business, and have no kids I have some flexibility with my time. That's allowed me to be involved with Michigan politics, take on the presidency of the Chronic Illness Coalition of MI and be A CCAN rep all at the same time. Since all of these activities tie together I am able to do more than I would if I wasn't so connected in the community.

I encourage people to write letters, to be in contact with their legislators and to educate them about caregivers' concerns. I say to family caregivers, 'Pull yourself up, speak out and make yourself heard.'

Also being a CCAN rep has allowed me to meet, primarily via phone or email, so many of NFCA's Michigan members, and in some cases help them. For instance I learned there were four women living within a seventy-five mile radius of each other, all of who had a child with cerebral palsy. I put them in touch with each other. Now they email each other all the time and spend a day together when possible.

I see that as part of a CCANer's role, helping connect people to each other, to gather individual support, learn from each other, and to build the fighting spirit necessary to become an advocate for themselves and their loved one.

In Michigan we are lucky. Our senators, Carl Levin and Debbie Stabenow, as well as Governor Jennifer Granholm all understand the needs of family caregivers and the chronically ill. That means we have allies and that's always a good thing.

What issues do you find the public asks about most often?

From a policy standpoint people are very interested in learning about respite care bills, tax credits for family caregivers, availability of basic resources and education. They don't have a clue about their medical benefits.

What has surprised you the most as you've learned more about caregiving from the family caregiver's perspective?

I think what has surprised me the most is to see that the problem is not so much about resources as it is about education. It's shocking how little if any information is passed along to caregivers. People are shipped home from the hospital and they are on their own.

In caregiving, we talk about the importance of self-care. Given your busy life, how do you replenish yourself?

Well, I have three cocker spaniels. I love being around people. I enjoy being with friends. I like to read, anything from self-help to Stephen King. I like meditative books and keeping up with current events.

What is your vision for CCAN?

I see CCAN as a mechanism for bringing family caregivers together, for connecting on the local level, the regional level and the national level. I see each individual CCANer as a beacon that family caregivers can turn to for education, information, and support. I really think CCAN can be the arms and legs of NFCA and help bring about the changes that are so much needed to make life easier for family caregivers and their loved ones.

To learn more about CCAN and becoming a CCAN Representitive, contact Linda Jones at: linda_jones100@hotmail.com.