Dementia's Caregivers Find Hope, Support in Nonprofit
Karen Karle-Truman says her work at Dementia Caregiver Resources is both a calling and a gift.
At the tender age of 8 years old, Karen Karle-Truman experienced firsthand the challenges that Alzheimer’s can have on the family dynamic.
When her grandmother began to show signs of dementia, a loss of mental ability severe enough to disrupt daily life, her mother and other family members moved her closer to them so that they could help take care of her needs.
Twice a week, Truman and her mother would make the 50-mile drive to visit her grandmother in a nursing home. Discussions became difficult between her mother and other relatives regarding caregiving decisions. The tension caused several family members to not speak to each other for years, which had a deep impact on Truman.
This experience set the stage for what would become her life’s work.
Years later, Truman began noticing symptoms of dementia in her mother. She became forgetful and could not recall entire events or conversations. She would forget appointments but continued to work. Over time, she deteriorated mentally to the point that Truman decided to move to Florida to help care for her.
Truman’s mother was eventually diagnosed with Alzheimer’s at USF’s Memory Disorders Clinic.
“When you hear that diagnosis, you just want to sit down for days; it really hits you," Truman said. "It confirms what you didn’t want to believe but knew was true.”
Family Found Support in Others
An only child, Truman didn’t know how or where she could get help. She found an adult day care service through Neighborly Care Network, which became a lifesaver for her. Her mother loved the activities, and Truman appreciated the assistance. Soon, Truman started a caregiver support group for family members of dementia sufferers. She later was hired by an assisted living facility to start another support group.
In 1997, Truman founded Dementia Caregiver Resources Inc., a 501(3)(C) IRS-recognized nonprofit dedicated to providing resources to caregivers who take care of people who have a form of dementia. The nonprofit focuses on helping families deal with the traumatic symptoms and the difficult journey they will face.
With dementia, caregivers often feel they lose their connection to their loved one as memories begin to fade and the person they once knew slowly withers away. Taking over someone else’s life, including their finances and daily care, can be overwhelming.
Offering support groups, counseling, professional staff training, educational events and other services, DCR provides comfort and resources to caregivers who need validation and direction. DCR hosts approximately 10 support groups a month throughout Pinellas County, including sessions in Clearwater and Palm Harbor.
“Spending 20 years listening to many support groups each month, I’ve learned so much from the families we help,” Truman said.
In Dunedin, caregivers can also talk through their experiences with others in a weekly Alzheimer's support group at the Hale Senior Activity Center. That group is not affiliated with DCR.
Experiences Inspired Caregiving Bible
Wanting to provide inspiration, Truman wrote The Dementia Caregiver’s Little Book of Hope. The latest version of her book provides resources as well as a different perspective that gives readers hope for the future and openness for growth as they continue their caregiving journeys. Caregivers often tell Truman that her book is their bible and they refer to it constantly.
Participating in many events, DCR secures sponsorships to aid caregivers financially so that they can attend life-changing opportunities such as cruises, workshops, conferences and symposiums. Truman has never taken a salary for her work, so all funds are available to help support the programs and events her nonprofit offers.
When Truman eventually lost her mother to Alzheimer’s, she donated her brain to The Florida Brain Bank to support research and understanding of dementia-related diseases. Her loving donation gave her a sense of peace, knowing she was helping advance future treatments and cures.
“This work is a calling for me and a gift," Truman said. "I need to keep gifting others so that they can do better in their lives.”
On July 26, Truman will facilitate the fourth Alzheimer’s and Related Dementias Expert Panel Symposium presented by the Villas of Belleair in Clearwater. From 10 a.m. to 1 p.m., family and professional attendees will be engaged by experts in the Alzheimer’s and dementia communities. To R.S.V.P., call 727-467-9464.
On Nov. 4-5, DCR will take a group of caregivers to the Annual Caregiver Conference in Winter Park with speaker Naomi Feil, developer of Validation Therapy.
For details, to order the book or to make reservations to attend groups or events, e-mail Truman or visit www.dementiacaregiverresources.org.
The Alzheimer's Disease Group meets the second Thursday of the month at 2 and 7 p.m. at Consulate Health Care, 701 Victoria St., Brandon. Experienced group leaders work with patients and caregivers.
An Alzheimer's Support Group, for people affected by Alzheimer's disease, Parkinson's disease or strokes, meets the second Wednesday of the month at 2 p.m. and the third Monday of the month at 7 p.m. at Superior Residence, 1819 Providence Ridge Blvd., Brandon.
A Caregiver Support Group, for all who care for an aging parent or family member with cancer, Alzheimer's disease or any other chronic illness, meets the second Tuesday of the month at 7:30 p.m. in Room 2 at St. Stephen Catholic Church, 5049 Bell Shoals Road, Valrico.