Caregivers should get as much help as possible when it comes to caring for people with dementia — and not ignore their own feelings of loss. That’s the message Stacy Gladfelter planned to deliver during the Alzheimer’s Foundation of America educational conference in Wichita last month.
“One of the biggest things I talk about is building a good support system,” said Gladfelter, a certified grief coach and author of “Healing in the Everyday.”
“If you don’t have a large support system, let’s talk about what other resources we can bring in.”
Gladfelter has been active in senior health care about 17 years, including the last five as the owner of Andover-based ILO Senior Consulting.
Other speakers scheduled for the May 20 event were Charles Fuschillo, Jr., president and CEO of the Alzheimer’s Foundation of America; Robin Heinrichs, a clinical neuropsychologist; and Randy Clinkscales, who practices elder law.
Gladfelter said her mother died of Lewy Body Dementia and her grandfather of Alzheimer’s disease. “I’m well acquainted with the dementia journey.”
In speaking to groups, Gladfelter said, she often hears from “tired and exhausted” caregivers who “don’t what else to do.”
“The main thing is, ‘How do I get help? How do we finance this, and how do we get help?’”
One suggestion she offers is looking for affordable adult day care services that offer respite to caregivers.
Caregivers, she said, are too often silent victims of their own good intentions. They may abandon careers they love, face financial difficulties and neglect other important relationships because of their understandable desire to care for a loved one.
Failing to acknowledge the costs one incurs in so doing doesn’t make them go away, she said.
“My focus is how to handle the losses as they’re occurring rather than letting them store up and have to deal with them later,” Gladfelter said. Dealing with them in the present “makes it easier, not only for the caregiver, but also for the (affected) person. They’ve dealt with so many things all at one time, we tend to see them not being able to provide a good quality of care for that person.”
It’s been estimated that 63 million Americans function as caregivers, a number that increased during the pandemic.
Gladfelter said it’s the goal of most caregivers to take care of their loved one at home until the end of their dementia journey “because that’s what everybody wants. But sometimes it’s not a realistic goal. We do have to have those difficult conversations.”
And it’s best those conversations take place sooner rather than later, she said.
“Ultimately, it’s up to the family how they want to support that loved one. While the intentions are good to keep them out of 24-hour care, what we see is by the time they get to a point where they’re ready to place (the patient), the quality of life, the quality of care, is sometimes lacking.”
“It’s just good to plan,” she said. “Being proactive is the best way to care for your loved ones.”
