Sally Haynes has endured waves of emotional distress as she witnesses the gradual mental decline of her husband. The experience has led Haynes to develop a support group for those who are faced with caring for loved ones with dementia.
The Orangeburg resident named her group “The Other Side.” Meetings are held at 6 p.m. on Tuesdays, usually at the Orangeburg County Library. The group held its first meeting on July 10.
Haynes said the support group serves as an outlet where she and other caregivers can share their concerns and frustrations. Her husband, who has hypertension, suffered a mini stroke in October 2017. He is battling vascular dementia, which occurs after a stroke and is the second most common form of dementia after Alzheimer’s disease.
The South Carolina Chapter of the Alzheimer’s Association reports that dementia is not a specific disease, but rather a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example.
Haynes said the support group is therapeutic for her, particularly since it has been difficult seeing her husband not be able to do a lot of the things he used to do.
“You see the person that you love going and coming, mind-wise. You wake up in the morning. Fine, the person is there. The other half of the day, they are not there. It's like he's trying to grasp stuff, but it's not coming together. He's constantly trying to come together with something, but it's not coming together. He's not holding on to his thoughts,” she said.
“I felt I needed it (the support) because I'm looking at someone that I'm with, knowing that they can do things, but now they don't even remember how to do it," including putting a ceiling fan up, using a measuring tape or operating a DVD player, Haynes said.
She said approximately 10 people attended the first meeting of the support group, exceeding her expectations.
“We vent. That’s the main thing that we do. We come together, we talk and try to give each other support and understanding. Even if one of us finds something out, we bring it to the group and let the other participants know about it,” Haynes said.
“I’m praying that the group will give people an outlet to deal with whoever they are the caregiver for. ... You need to be with somebody who’s going through the same thing and could give you some kind of relief," she said. "Sometimes I just have to get in the car and go and just stay. I can’t be concerned with what he’s (her husband) doing, I can’t be concerned with what’s going on."
Sheila Lewis, the Midlands area program director at the state chapter of the Alzheimer’s Association, said caregiver stress is a reality for which her agency provides services. She said the association has its own support group that is led by Tina Fogle and meets at 12:30 p.m. the third Tuesday of every month at Cornerstone Church at 1481 Chestnut St. in Oranegburg.
“We encourage caregivers to attend our support groups because it makes a difference when you’re in the company of others who are going through (the same thing)," Lewis said. "In that group, caregivers share different techniques that they’ve learned, and basically that caregiver knows that they’re not alone."
She added, “I always say until we find a cure or treatment, which we are working on, we have to take care of our caregivers. Caregiver stress is taxing. No one can do it alone. With this disease, it could be a journey because it could last from three, four, five, up to 20 years perhaps.”
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“The Alzheimer’s Association provides care and consultation for family members who’ve just gotten that diagnosis. Oftentimes it’s after a crisis that we have to do a care consultation, but we encourage family members to please contact us when that doctor has made that diagnosis so that we can start planning for the journey with that caregiver,” Lewis said.
Educational programs are also offered to family caregivers as well as professional caregivers who work in long-term or in-home care settings and law enforcement and first responders who are called when someone’s loved one wanders off.
“We also have a MedicAlert Safe Return Program, and that is a nationwide wanderers’ safety program. The person with the disease and their caregiver wear an identification bracelet, and then their medical information is put into a database system," Lewis said. "So if they wander off, first responders will be notified first and then we will be notified. We will work with that family until their loved one comes home safe."
She added, “The Alzheimer’s Association also has what we call early stage social engagement programs for those who are in the early stage who are still able to function, or able to function in a big setting. ... We also offer information referral if a person is in need of an elder law attorney or a geriatrician or an in-home care facility.”
In addition, the agency provides assistance in more than 140 different languages through its 24-hour helpline at 1-800-272-3900.
“The Alzheimer’s Association also has a respite program here in South Carolina, and we provide respite for caregivers to give them a break to go out and just go get their hair done, or go play golf, or just have some time for themselves to regroup,” Lewis said, noting that caregivers can receive a voucher for that service that’s renewable each year.
Catherine Longfellow, the family caregiver specialist at the Lower Savannah Council of Governments, said her agency has $1,500 grant vouchers for which caregivers can apply.
“The funding is specific to providing caregivers with respite, or break from caregiving. The voucher can be utilized at any DHEC-licensed agency for respite services. It has to be used within the three-month period written on the grant and can be accessed only once per year," Longfellow said. "There is an application process, and caregivers can contact me at LSCOG to have the application sent to them."
She said a 2015 joint study completed by the National Alliance for Caregiving and AARP indicated that approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.
The study also revealed that higher-hour caregivers were more likely to experience emotional distress, physical and financial strain and impacts on their health, Longfellow said. Six in 10 caregivers reported having to make a workplace accommodation as a result of caregiving, such as cutting back on their hours, taking a leave of absence or receiving a warning about performance or attendance, she said.
“It’s tough," Haynes said. "There is no way you can do it by yourself. If it comes to a point where I won’t be able to handle my husband, or either he needs more help than I can give him, then I would put him someplace. It would be the right place that I would feel comfortable with. I wouldn’t put him just any place.”
Lewis said the state chapter of the Alzheimer’s Association provides a sitter service for caregivers to be able to attend support groups, educational events and fundraisers that are hosted by the agency.
“Most often those who use our sitter service respite have already used our regular respite. There is help," she said.
"We’re also hosting a statewide research conference Nov. 9 in Columbia. It’s free to the public. ... We are bringing awareness to the different clinical trials that are taking place here in South Carolina. A lot of people don’t know about those clinical trials. So we’re trying to get that word out. It takes two sources, people and money, to find a cure or treatment for this disease,” Lewis said.
For more information about Haynes’ support group, contact her at 803-747-4248. More information on services provided through the state chapter of the Alzheimer’s Association can be found online at alz.org/sc.