COA program provides support to family caregivers

Thursday, November 20, 2014

Clavilia and Forrest

According to Clavilia, 81, everybody needs a “go to” person. Clavilia herself is the “go to” person for lots of people, including her family and friends, but most importantly, her husband of nearly 32 years, Forrest.

Forrest has Alzheimer’s disease and Clavilia, despite her own health problems, has been his full-time caregiver for more than 10 years.

When they first met more than 30 years ago, Forrest was a widower, sitting on his Hamilton porch stoop in the middle of the day wearing a rumpled shirt, a brown paper bag in his hand. Clavilia was visiting from Cincinnati to help start a choir at a local church. She happened to be visiting Forrest’s niece, who lived next door. Clavilia recalled saying hello to Forrest as he sat on his porch. She was surprised when Forrest knocked on his niece’s door and said, “I want to meet that pretty woman that just went in there!”

Clavilia was a single mom, worked full-time and was active in her church. She didn’t have time for a man who smoked cigarettes or drank alcohol. Forrest gave up both, tidied himself up and started going to church again. The two married in January 1983 and Clavilia moved from Cincinnati to the Hamilton home they still share today.

Sitting together at the breakfast table in their kitchen – Forrest’s favorite spot – Clavilia enjoys talking about their life together. They shared many good years together and her fondest memories are of music and singing at their church. Though she was never formally trained, Clavilia put her heart and soul in to her work with the church choir and Forrest was her biggest supporter.

“I think about those things and the way it was. Those memories bring you to today and they’ll keep me going for tomorrow,” Clavilia said.

For Forrest, however, those memories began to fade about 10 years ago. Clavilia had just been diagnosed with Colon Cancer. She was receiving chemo treatments in the morning and then going to work in the afternoons at a bank in Hamilton (she previously worked for the Social Security Administration for 21 years). Out of the blue, Forrest started making unusual calls to the bank. After the third time, Clavilia said, “Ok, enough’s enough. He needs me at home.” She retired for good at age 72.

After managing on her own for several years, Clavilia and Forrest began receiving services through the Butler County Elderly Services Program (ESP), a tax-payer supported program that provides in-home care for eligible Butler County seniors.

While the extra help was nice, Clavilia still managed most of Forrest’s care. As Forrest’s condition progressed, a doctor suggested it might be time for him to live somewhere else, but Clavilia firmly said no.

“God didn’t tell me yet. Until I feel it in my heart, it’s not going to happen.”

Then in 2014, the couple’s ESP care manager suggested Clavilia take advantage of Council on Aging’s (COA) free Caregiver Education and Support Program.

Nina Forrest and Clavilia
COA home health nurse, Nina, with Forrest and Clavilia

COA’s caregiver support nurse, Nina, spoke with Clavilia on the phone and then scheduled a home visit. COA’s Caregiver Support and Education Program is unique in that the focus in on the caregiver – not the care recipient.

During the visit, Nina learned more about Clavilia’s role as Forrest’s caregiver, listened to her concerns and talked with her about managing her own health problems – diabetes and arthritis. She helped Clavilia understand that by taking time for her own health, she could be a better caregiver for Forrest.

“You spend much of your time taking care of Forrest, anticipating his needs,” Nina told her. “It’s real common that caregivers will neglect their own needs, especially around medical issues. But you’re taking the time to be sure you’re ok, and that’s good.”

Thanks to respite and senior companion services through ESP and Catholic Charities Southwestern Ohio, Clavilia is able to have some time to herself. She has continued to work with a children’s choir through church and also takes time to close the door to her own room to rest, read or get caught up on paperwork.

“It’s so good that you decided to continue with [the choir] because that helps you to have balance in your life,” Nina told her. “It’s something that’s very rewarding to you and it’s an activity that’s separate from caregiving that gives you a break and feels worthwhile. You are giving all the time, giving, giving, giving. You have to have activities that help fill you back up.”

Nina also gave Clavilia a folder of information about caregiving and Alzheimer’s disease – the information in the folder is customized depending on the caregiver’s specific needs and situation. Clavilia also received a health care journal to record Forrest’s medical information and appointments, and a caregiver manual, developed by COA’s own home health nurses.

Clavilia said the materials are a comfort to her when she has questions or needs reassurance.

Caregiver Materials

“It’s almost like she’s there for me. When I can’t talk to her on the phone, I just pick up her materials because they speak for her,” Clavilia said. “She shared things I did not know about. I didn’t know where to go. I could have gone to the library but that wouldn’t have given me what [Nina has] given me.”

Nina meets with or talks to about 200 caregivers each year. She admits that not everyone is as open and accepting of her help and advice as Clavilia. Sometimes caregivers only want to talk on the phone, or they ask her to mail them the information.

“Everybody’s different,” she said. “People receive things differently.”

In this particular case, though, the mutual admiration is evident.

“It’s a privilege to get to know people through this program,” Nina said. “Because if you want to see what’s inside a person, spend some time with a caregiver. Caregivers are challenged, they have a lot of responsibilities and in situations like this, [caregiving] can go on for a long, long time. Caregiving takes endurance and perseverance and dedication. It’s been a privilege to get to know you.”

“Words can’t express what Nina has instilled in me,” Clavilia said. “Just in our little visit, she made me feel so comfortable, so at ease. She is somebody I could talk to and I didn’t have to worry about how they would take it. She has given me strength and courage and she has encouraged me to do what I do.”

For more information about COA's Caregiver Education and Support Program, call (513) 721-1025.