Getting Help When You Need It
By Melissa Sprouse Browne Photos by Sally Taylor
Respite care is an important component of any caregiver’s plan when looking after a loved one. As we move into the busy holiday season, having time for yourself and a chance to recharge is critical for anyone in the caregiver role. If you’re unfamiliar with the term, respite is regular, temporary breaks from caregiving for a person (of any age) who has a disability, special need or chronic illness.
The sandwich generation, meaning someone who is caring for an older family member while still managing his or her own career and younger family, is an ever-growing segment of our population. As we’re living longer and couples wait to start their own families, the likelihood of joining the sandwich generation grows. Understanding the resources available for short and long-term help can make your life easier, especially during the most hectic time of the year.
No one knows more about the available resources in respite care than Janet Altman. Janet’s the executive director of the South Carolina Respite Coalition. She's a former educator and most recently did marketing for assisted living and memory care communities. She's also worked in public schools with children who had disabilities and with an adult day program. She knows firsthand the necessity for respite for family caregivers.
“If you are taking care of a family member, maybe your mom or dad or maybe a spouse or child and not having regular time off to take care of yourself, it puts you at risk,” she said. “When you're caring for a loved one, it's a job. How many jobs would you willingly work 24 hours a day, seven days a week for months and months and years and years without a day off?
“In the context of the family, because we love our mother, our father, spouse or child, we are going to do what it takes to care for them and keep them with us. Suddenly, all those rules go out the window. You’re there 24/7, even to your own detriment,” she continued.
Indeed. It’s heartbreaking when you see a family caregiver who reaches a breaking point because she’s exhausted. It’s hard to deliver care when you’re beyond tired.
“We talk about it on airplanes. When the oxygen mask drops, they say put it on yourself before you try to put it on your child or loved one. Take care of yourself so you can then take care of them,” Janet said. “The same rule applies to family caregiving. Take care of yourself. It's ok. And then you can take care of the one for whom you are caring.”
Family caregivers are common, with conservative estimates suggesting around 770,000 in South Carolina alone. A recent report by the federal government estimates 40 million family caregivers in the country. “Most people don't really know that there is anything out there for them. They think they’re in this situation by themselves and that's not really true,” she explained.
The SC Respite Coalition is the only statewide non-profit organization working with families across the lifespan to increase awareness of the need for respite and to expand quality respite services for family caregivers of all ages. Begun as a grassroots effort in 1999, a formal coalition was formed through incorporation as a non-profit in 2001 with thirty agencies agreeing to partner in creating a statewide organization for respite. The SC Respite Coalition works to support families and providers through a coordinated respite information resource, to provide respite care opportunities for family caregivers through vouchers for respite, education and training for caregivers and providers, and working with communities to develop local respite options.
The SC Respite Coalition has a voucher program to award funds for families in need of assistance. The voucher could be used to hire a professional caregiver to come in for a few hours each week to allow the caregiver a chance to run errands, attend a church service or support group or just take a walk. The vouchers are for a limited award amount and last for a finite period of time.
“This small amount of relief would give that wife a chance to have her time for three months and she might decide she feels so much better when she has that two hours off every week. She may figure out a way to have her sister or her husband's brother or other family member or friend come on a regular basis,” Janet said. “Respite could plant an idea and give a plan to someone who says, ‘Wow I feel so much better, I need to continue having short breaks.’”
Family caregivers accept their roles and often feel guilty for letting someone else take over the responsibility of managing their loved one’s care, even if for a little while. “I've had hundreds, if not thousands, of conversations in the last 19 years here in Columbia with family caregivers and that is a thing that is comes up every few minutes. They’re so concerned and don't want to have any regrets later. Their loved one isn’t going to be here forever and that guilt causes them to really become isolated in so many other ways,” Janet explained.
There are resources for respite that people are leaving untapped. Creating a plan and giving yourself permission to take a short break can help you maintain your own health and happiness. Plus, having a new person interact with the care receiver can be a positive, too. “We find that the care receiver often feels refreshed by a different face being there,” Janet mentioned. “A different interaction with a different dynamic can refresh the care receiver as much as it refreshes the caregiver. It's a win-win.”
Caregivers may not realize that the care receiver may also be isolated socially and having some additional interaction can be a good thing.
When you hear about respite, think in terms of formal versus informal. Formal respite options might be hiring an agency to come to your home with credentialed care personnel or it might be taking your loved one to a day program or placing him or her in a care facility for a short period of time. Informal respite options might be taking up a friend on her offer to sit with your loved one while you go out for a few hours. Informal respite will likely be more readily available, if you think about the social network you have.
Do you have a friend or neighbor who's retired that would love to sit with your loved one for a short period? Friends in your faith community could also help. “We're continually using that phrase about informal respite and volunteerism to find ways to get a break for the family caregiver,” she said. “Who do I know that loves my loved one and that I would feel good about them staying with in my absence? Who is that person or persons in my circle of support?”
The staff at the SC Respite Coalition is available to help coach you in finding ways to make your life and that of your loved one more positive. “We will coach you through thinking about who can your circle of support become or who is your circle of support that you're not really connecting the dots with. They're there, but you're not really connecting like you could. There’s power in saying out loud, ‘I need you to help me in this area,’” Janet said.
The Central Midlands Council of Governments houses the Area Agency on Aging. The respite programs offered by this organization are for those caregivers providing care at home for a loved one or family member. These respite programs can be used to hire someone to help assist the caregiver with his/her loved one’s care and provide much needed relief. Respite can be provided by an agency, facility or adult day care as well as an individual. One of the CMCOG’s respite voucher recipients is Danny Brabham and his wife, who prefers the familial term, “Sis.”
“This was like the London fog coming on,” Danny said when describing the beginning of his journey as a full time caregiver for his wife of 61 years. “It came on slowly and Sis began to have some memory problems. She was going to lunch with friends and we talked about where she was meeting her group. I gave her directions, but she got lost. Her friends called me and said she never arrived, so I went looking for her. She found her way home and called me, which was the beginning of an onset of Parkinson’s-related dementia.”
“From November 2016 to now, she totally depends on me to get her out and take care of her personal needs. I take her to the table for breakfast. She can’t do four out of the five activities of daily living,” he explained. “She looks at the food, but I cut it up for her. I use this little ditty of ‘take the string to make the patch to make the quilt’ for comfort. You just take things one step at a time,” he said.
He knew he would need help caring for Sis, so he took advantage of a conference that was held at Brookland Baptist Church in West Columbia. “I knew I had to find out what was available and get some assistance. When you get into caring for a person, it’s more than a full time job. I happened to be walking out of the conference at Brookland Baptist when a lady walked in and she said she worked with a Charleston senior group and suggested I talk to the Midlands senior group. That led me to Becky Baird at Central Midlands, who was instrumental in showing me the programs available,” Danny said.
The men’s group at Virginia Wingard United Methodist Church built a wheelchair ramp to make it possible for Danny to get Sis in and out of their home in her transport chair for regular outings. “People want to help you. If you’re isolated, you’ve got to go find where you can get the help you need,” he shared.
Caregiving duties don’t cease at the holidays. If you reach out and discover the many resources available, the stress level can decrease and both you and your loved one can rest a little easier. Please see the sidebar for a number of names, numbers and websites to use in crafting your respite plan.
• Local Council on Aging: 1-800-868-9095. www.aging.sc.gov/Contactinformation/
• Family Caregiver Support Program: 1-800-868-9095 www.aging.sc.gov/contact/Pages/FCSPContacts.aspx (1) care receiver must be 60+ but their caregiver can be any age; (2) parents 55+ still caring for adult “child” with developmental disabilities; (3) caregivers of any age of people with dementia.
Aging and Disabilities: www.scaccesshelp.org (see “Aging” for parents 55 + of adult children with Dev. Dis.) County information specialist: https://scaccess.communityos.org/local/os107/posting_area/IRAList4.htm
• Community Long Term Care Office: 1-803-898-2590. (helps families care at home for loved ones who need nursing home level of care.) www.dhhs.state.sc.us/dhhsnew/insidedhhs/bureaus/BureauofLongTermCareServices/CLTCOverview.asp
• Find your local Aging and Disability Resource Center (ADRC) 1-803-898-2590.
• To locate ARCC part day respite centers: 1-800-868-9095
• Alzheimer’s Association: Chapter: 1-800-273-2555 www.alz.org/sc/
Disabilities or Head & Spinal Cord Injury: http://ddsn.sc.gov/Pages/default.aspx
• SC Dept. Disabilities & Special Needs: 1-800-289-7012
• SC Autism Society: 1-800-438-4790 www.scautism.org/WEB/index.html
• Multiple Sclerosis Society: 1-800-922-7591 www.nationalmssociety.org
• ALS Association: 1-803-667-4549 www.alsa.org/
• Find your local Family Caregiver Support Program: 1-800-868-9095 www.scaccesshelp.org
Veterans: Caregiver Support Line; 1-855-260-3274.