By Deborah Jeanne Sergeant
Powerful change often comes from a place of personal heartbreak.
Such is the case for Debra Kostiw of Henrietta, author of “Forget Me Not: The #1 Alzheimer’s and Dementia Guide for Professional and Family Caregivers” (October 2022, Amazon.com).
More than a decade ago, her mother, Ellie McGarigle, was beginning to need more and more help with activities of daily living as the effects of dementia were becoming evident.
Kostiw was unable to dedicate the time as a full-time caregiver. It seemed like a good solution when a family caregiver arranged to take her into his home. McGarigle moved in with the family member who lived hundreds of miles away. Kostiw alleges that afterwards her mother was coerced into signing away her legal rights and her financial resources to her caregiver and despite this she suffered neglect and abuse. Kostiw believes that McGarigle died because of this family member’s negligence —a tragedy she feels determined that no other family should experience.
Kostiw was the catalyst behind senior caregiver legislation currently on the floor of the NYS Senate. Introduced by state Senator Samra Brouk, the bill prevents caregivers from inheriting money if they have been convicted of elder abuse.
Kostiw also wants to equip more people with the knowledge and strategies they need to provide memory care, whether as a family caregiver or as part of their work. “Forget Me Not” uses case studies and recent research in dementia care in an easy-to-read volume.
Sharon Brangman, chief of geriatrics at SUNY Upstate Medical University in Syracuse, wrote the forward to the book.
“When I’m working with patients, I emphasize that there’s not a pill that fixes all the problems we see,” Brangman said. “A lot are non-pharmacological approaches. It’s about getting caregivers to understand what might be happening in the person’s brain and the right way to approach it. Most caregivers are frustrated because their loved one is agitated.”
She added that this behavior does not indicate poor caregiving, but it is simply how the disease manifests.
Brangman likes the straightforward language and practical tips “Forget Me Not” offers.
“We often can’t answer all their questions in the office visit,” she said of caregivers. “It’s good to have a reference to use. “This book really covers the most common problems we see in our patients and it breaks it down into sections where you can understand what is going on and the best way to approach it.”
She recommends “Forget Me Not” for family caregivers and relatives of dementia patients, but also for professionals such as nurses, physicians and nursing home staff, as little training in nursing or medical school focuses on working with patients with dementia.
“Debra’s a great resource and I know writing these kinds of books is very time consuming,” Brangman said. “We’re fortunate she took the time to organize and get down this information.”
Kostiw sees the need for “Forget Me Not” at the business her husband, Paul, owns, No Place Like Home Senior Care in Henrietta. She noticed through the recruiting process that candidates who said they had worked in memory care had only completed a one-hour class. Their approach to care stemmed from a perspective of doling out sedating medication and wrangling patients with difficult behavior. Instead of these, “Forget Me Not” focuses on strategies for preventing and mitigating potential conflict.
Kostiw believes that for many people caring for patients with memory issues “they go to work every day thinking they’ll be fighting with patients, it will be horrible and there will be resistance and arguments. It’s stressful,” Kostiw said. “That’s because they don’t have the proper skills and training to know how to handle situations or turn a bad situation around. The more I’d hear from aides and nurses and everyone I talked with in the medical community, they said they don’t have the training to help families and patients at the level they want to.”
She decided to provide that information in “Forget Me Not” as a relatable volume of practical information.
“I decided I needed to put all my knowledge and experiences, personal and professional, together in one cohesive resource for the professional, the doctors, nurses and memory care unit workers, those working in the dining room in assisted living. It’s also for financial planners, bank tellers, restaurant workers — anyone who comes across people with dementia. It’s also for family caregivers, the daughter, the grandchildren, if you have friends at church showing signs of memory issues. It’s a resource that will help anyone working with someone.”
Although medication may slow the progression of dementia, no treatment exists for it. The only approach is early diagnosis to offer the patient and family the opportunity to choose how they want to live, such as aging in place, assisted living and nursing home care. The family and other caregivers can learn coping strategies for making life easier for the patient.
Kostiw is a certified dementia practitioner and hosts a radio show on WYSL about dementia. She also operates a YouTube channel, Answers About Alzheimer’s.
By the end of the year, she hopes to launch an online program with different levels of training people can take and a certification program for professionals or family caregivers.