Madelen Barkins provides care for both of her in-laws, who were diagnosed with Alzheimer’s five years ago
By Deborah Jeanne Sergeant
Family and community supports have enabled Madelen Barkins to care for her father-in-law and mother-in-law who were diagnosed with Alzheimer’s five years ago.
She started seeking help at Upstate University Hospital’s department of geriatrics where Kathy Royal, a community liaison, helped her learn about available resources.
Sharon Brangman, director of the Upstate Center of Excellence for Alzheimer’s Disease, also helped answer Barkins’ questions.
As to who would care for her in-laws, Barkins held no doubts.
“Once it does happen to a family member in the African American community, we tend to take care of them at home,” she said.
She attended geriatric workshops to learn more about caregiving and became involved with Alter, an organization based in Atlanta that reaches African Americans about caregiving for people with Alzheimer’s. The program works through churches, which spurred Barkins to have her pastor, Steven Williams of Four Square Gospel Church of God in Christ in Syracuse, to work toward becoming a dementia-friendly church. One of those efforts is the God’s Abundant Love Abides program that helps people caring for someone with a brain disease to feel welcomed with their loved one.
“I have found so many people; it’s such a hard caregiving,” Barkins said.
She has learned that relying solely on herself leads to burnout. Within a year of caregiving, she realized that others’ help can make her caregiving role more sustainable.
Now, she delegates some of the responsibilities to other family members in the area, as one manages the couple’s finances, another helps ferry them to doctor’s appointments, another picks up groceries and supplies and another gets them ready for church. Barkins is also no longer the only caregiver.
“We’re fighting for as long as we can to care for our parents,” Barkins said. “They will be at home.”
Barkins encourages other caregivers to take their loved ones to places and events they enjoy. For her in-laws, that’s church, among other things. Since they were involved with the church for more than 50 years, it’s a second home to them.
“What I learned the most is you have to meet people where they’re at,” Barkins said. “Learning this, my in-laws aren’t the same as they were personality-wise but they’re still there. If they’re having a good day, we’re there for them. If they’re having a bad day, we’re there for them.”
She continues to tap into spiritual resources, relying on her faith to see her through.
“God is bigger than Alzheimer’s,” Barkins said. “Within the church community, we see God is love and love is bigger than Alzheimer’s. If we see people who are burned out, we help.
“There’s a lot of poverty. If you’re on the south side of Syracuse and there’s a single mom with two kids and a grandma with Alzheimer’s, there’s stress. You may not be able to care for the mom, so you feel guilty. They want to keep grandma home as long as possible. You want her home, around family.”
Mary M. Koenig, administrator of Loretto Heritage Memory Life Community, said that because caring for someone with Alzheimer’s or dementia is an isolating experience, establishing a care team and delegating — just as the Barkins family has done — will help with reducing stress.
“If friends reach out and say ‘What can I do to help?’ maybe they could stay with mom for an hour so you can go to the grocery store or go play pickleball,” Koenig said. “Take people up on what they’re offering to do to help.”
In addition, caring for yourself is essential. Koenig said that people caring for someone with Alzheimer’s are at greater risk for anxiety, depression and overall poor quality of life. Instead of forgoing hobbies and relationships, they should “carve out time each day to do something they like, like reading a book, meditating, going to the gym,” Koenig said. “Don’t lose yourself in caregiving. Oftentimes, caregivers succumb to physical illnesses while caring for someone with dementia. It’s all-encompassing and exhausting.”
Getting enough rest, eating well, exercising and taking time off are all part of self-care.
Try These Tips for Taking Care of Someone with Dementia
If you’ve met one person who cares for a family member with Alzheimer’s or another form of dementia, you’ve met only one person who’s a caregiver.
Most caregivers are retirement age. Some care for people with early onset dementia and are younger themselves, such as a 30-year-old caring for a 55-year-old parent with dementia.
Early onset dementia occurs in people younger than 65, accounting for about 5% to 6% of those with dementia.
A younger adult childcaring for someone with dementia may still work and have young children at home, bringing a whole different set of challenges to the caregiver role.
Learning about Alzheimer’s can help make caregiving easier.
That’s a strategy recommended by physician Sharon Brangman, faculty at SUNY Upstate Medical University, distinguished service professor, chairwoman of geriatric medicine and director of the Upstate Center of Excellence for Alzheimer’s Disease.
“Be educated to understand this complex disease and all its nuances,” Brangman said. “Realize there’s a mix of emotions that come into play when you care for someone, like guilt, sorrow and anger and happiness. Some say they feel privileged to provide this care but it’s exhausting. Find all the resources in your community that can support you and enlist home health aides and family members to give you regular breaks. It’s the toughest type of care to give.”
It is vital for providers to connect caregivers to community resources and to help in developing strategies to manage the challenges in this role. Many social organizations such as community groups and churches provide both formal and informal assistance such as senior day programming, congregant meals, transportation and senior sitting and respite care, which can support family caregivers, depending upon their needs.
These resources can also save money compared with the costs of paid assistance.