Nov. 20, 2017 | When caring for someone with dementia, it’s vital to learn to love that person for being who they are now, rather than the memory of who they were, according to all three former family caregivers who participated on a discussion panel as part of the celebration of caregivers at the UAMS Donald W. Reynolds Institute on Aging.
“Learning that the tough-talking, mean-spirited lady who showed up from time to time was this stranger occupying my mother’s body was almost overwhelming,” said panelist Sybil Hampton, Ed.D. “Learning to love and respect that woman saved my sanity and allowed me to give her the highest quality of life every day.”
On Nov. 8 at the Reynolds Institute, as part of a celebration of National Family Caregiver Month, Beth Coulson, state Rep. Les Warren and Hampton participated in an hour-long panel discussion about their caregiving experiences before an audience of more than 60 people, many of them caregivers themselves. Fox 16 News anchor Donna Terrell acted as the panel moderator.
The Schmieding Home Caregiver Training program organized the event. Jeanne Wei, M.D., Ph.D., director of the Reynolds Institute, and Robin McAtee, Ph.D., R.N., associate director of the UAMS Centers on Aging, made opening remarks and introductions.
At eight training sites around Arkansas, the Schmieding Home Caregiver Training Program provides education and skills training to family members and paid caregivers caring for older adults living in their homes, allowing older adults to have the choice to stay in their homes. McAtee acknowledged caregivers who were attending the celebration, including a number from several of the Schmieding training centers located throughout the state.
“This group has come together and trained more than 4,000 caregivers,” McAtee said. “Caregiving can be hard, and we’re ready to teach ways to make it easier.”
Caregiver of the Year Awards were presented to individuals nominated by staff and advisory committee members from each Schmieding training center within Centers on Aging in that area. The awardees and their nomination sites were Margaret Eason, Pine Bluff; Shirley Winn, El Dorado; Mardell McClurkin, Fort Smith; Evelyn Garrison, Hot Springs; Mark Linkous, Springdale; and Phil Bishop, Texarkana
All three distinguished panelists had been caregivers for aging parents, family members and friends with dementia. Coulson is an attorney, a former Arkansas Court of Appeals judge and serves on the board of Coulson Oil Co. Warren represents District 25 in the state House of Representatives, which includes portions of Hot Springs and Garland County. He is president of Hot Springs Title Co. Hampton is the former president of the Winthrop Rockefeller Foundation and principal consultant at Sybil Jordan Hampton and Associates.
Terrell added to the panel discussion. She was the caregiver for her daughter, who died in 2011 from colon cancer.
Warren’s sentiments on sustaining love and coping with a parent with dementia soundly echoed those of Hampton’s.
“It’s just knowing that it’s OK, and to accept it,” Warren said of his mother. “So, I learned to just grab her and hug her and say, ‘I love you.’ That is the best it can be and love them where they are.”
A consensus also was shared by the panelists on the question of how to keep going as a caregiver and where to find support.
Coulson said that when caring for her mother, grandmother and friend, it was important for her to be able to take a few minutes for a cup of hot chocolate or to call a friend. All three said talking to friends, both to vent frustrations and to learn from other caregivers also, was a useful source of support and reassurance that helped diminish feelings of isolation.
The progressive decline of a loved one with dementia may not be a short journey, and Hampton said it’s never too early to start financial planning. She said she wished she had gotten financial counseling earlier as a family caregiver to do a thorough assessment of assets and potential liabilities.
Coulson suggested creating a loose-leaf notebook with all the documents and information loved ones will need when a parent, other relatives or friend die. She said her father compiled such a notebook for her to use that contained her parents’ will, lists of property, contact information for insurers and more. His notebook saved her from hours, if not days, of difficult research and mistakes that she might have made otherwise, she said. She now has compiled such a notebook of all her documents so that her survivors will have what they need when she dies.
Terrell asked the panelists how they coped with changing adult diapers and other challenges.
“The messes didn’t really bother me,” Coulson said. “I would distance myself by thinking of something else while I cleaned. You do what you have to do to get it done. It’s not their fault. You’re in charge of their dignity.”
At the conclusion of the celebration of National Family Caregiving Month, Warren read a proclamation by Gov. Asa Hutchinson, making November 2017 National Family Caregivers Month in Arkansas.