VALDOSTA — Lisa O’Barr sat on a stool in her new apartment shedding tears of grief for her husband of 22 years.
Not because he has physically died but because she says he’s no longer mentally available to her. She lost him some time ago.
“His mind is totally gone, but his body is still here fighting to be with us,” she said.
About eight years ago, Robert O’Barr was diagnosed with early-onset Alzheimer's. His wife is now his full-time caregiver.
She spends her days feeding him, giving him medicine and caring for all of his personal needs which include changing the bed sheets when he soils them.
She hangs onto the memories she has with her husband recalling the good times they shared.
Like others in Lowndes County, Lisa O’Barr is not just a wife. She’s a caregiver-wife.
The Valdosta Daily Times explored the reality of what caregivers in Lowndes endure daily, the passion that some have to tend to people who can’t tend to themselves and resources available to them.
Caring for Someone Who’s Dying
When Robert O’Barr was first diagnosed, Lisa O’Barr said she knew something was wrong with her husband; she just couldn’t pinpoint what exactly.
A former Brooks County manager and accountant, Robert O’Barr began to have difficulty working with numbers and spreadsheets, his wife said.
His difficulties progressed into him forgetting how to complete other tasks such as driving and not knowing his way home.
Frustration turned into anger in Robert O’Barr, and he started to exhibit mood swings. The Alzheimer's did not worsen until a few years ago, his wife said.
“With Alzheimer's, you lose your spouse or your parents twice,” Lisa O’Barr said. “What I mean by that, I lost him four years ago mentally; and soon, I’ll lose him for a second time for good.”
She said her husband has reached the end stage of Alzheimer's and will not live much longer. She said it is like caring for someone who’s dying before her eyes.
“I lose a part of him every day,” she said. “You know it’s coming. You just don’t know when.”
Parents to one daughter, the O’Barrs are expecting their first grandchild – a baby boy – on May 20.
“My prayer has been that he lives to see that child,” Lisa O’Barr said.
She believes she’s part of the reason why her husband continues to fight through his Alzheimer's, she said.
“I know there’s just enough of him in there still that he hears my voice, and he’ll wake up and smile,” Lisa O’Barr said.
“I went to try and re-position him in the bed, and he leaned up and kissed me. To me, and others, that’s why he’s still here. That’s why he still fights.”
Moments flow through her memory as she mourns the loss of family celebrations such as his birthday, which was April 1.
Lisa O’Barr recalled driving him to Colorado for their wedding anniversary in October. She said he’d never been but always wanted to go.
They captured the vacation with photos; but one month after the trip, Robert O’Barr didn’t remember it.
“What I was doing was creating in-the-now moments,” Lisa O’Barr said.
She said she liked to see his facial expressions as he saw the trees changing colors, the mountains and the snow.
"That is what I miss,” Lisa O’Barr said. “That’s what I’ll always miss. Those are the things that I grieve now.”
Caring for Caregivers
Lisa O’Barr said some caregivers die before loved ones do because of the hardship and toll it puts on them.
“If you didn’t have God’s favor or mercy on your life, you wouldn’t be able to do it,” she said.
His wife caring for him 24/7, Robert O’Barr is unable to physically move himself which means she must assist him with all movement.
Activities such as changing bed sheets put a strain on her, Lisa O’Barr said.
“It’s not easy because they’re like dead weight,” she said. “He’s lost a lot of weight, but it’s not easy for one person to pull him to one side to get something up under him, then pull him to another side; and all while (he’s) grimacing in pain.”
Sometimes Lisa O’Barr sits on her living room floor and cries as she listens to gospel music.
“If I didn’t have my belief and go to church and get that feeling, that spiritual therapy as I call it, to get me through the week, I couldn’t have done it,” she said. “I’d have given up a long time ago.”
With limited support, and most of her family members living in Texas, she said no one calls to check to see if she is OK. No one asks to bring her something to eat or her favorite coffee from Starbucks.
“Why people don’t realize that the one taking care of them (the loved one) needs it so much more I’ll never understand,” Lisa O’Barr said.
When her husband first entered a hospital about his diagnosis, Lisa O’Barr said no one visited or asked if she needed assistance.
“I was the only one that went and visited him in the hospital,” she said. “I shouldn’t have to call someone to say ‘can you help me do this.’ To me, I feel it should be offered.”
She can no longer attend church services because there is no one to sit with him.
A young lady visits with Robert O’Barr 8 a.m.-3 p.m. Mondays through Wednesdays offering Lisa O’Barr the opportunity for respite.
During these times, she partakes in favored pastimes such as shopping at thrift stores. She recently bought a black recliner from a thrift store for $10.
“It was like Christmas getting out,” Lisa O’Barr said.
It’s like freedom, she said.
A home health aide and a nurse from the Hospice of South Georgia and the Langdale Hospice House have become part of her family, she said.
Lisa O’Barr takes advantage of a five-day in-house respite program provided by hospice.
A caregiver may take their loved one to the hospice where he or she can stay up to five days to give the caregiver a break, according to hospice staff.
“This dedicated 15-room facility is the location for respite services provided by our team,” said Susan Bowden, hospice executive director.
“All rooms are private and families know that their loved one is receiving the very best of care by a well-trained staff during their much deserved and needed time of rest.”
Assuming caregivers utilize the full five days, the hospice provided 740 days of respite care with 148 caregiver breaks last year, Bowden said.
The numbers decreased from 2017 when the hospice provided 844 days of respite care with 169 caregiver breaks.
“We do have a few families who have used respite stays multiple times over the course of the year,” Bowden said. “Our team must verify caregiver fatigue or other needs to use respite to satisfy the Medicare regulations.”
Amanda Mason is the director of clinical support and admissions for Hospice of South Georgia. She is also a licensed social worker who has worked with caregiver families.
The respite program is a resource for survival to some hospice clients, she said.
“Caregiving is hard,” Mason said. “Any caregiver will tell you that, that it’s physically and emotionally draining, especially when you’re watching a loved one die when they’re under hospice.”
While some clients love the program, there are others who will not utilize it, she said. These particular caregivers like to keep their loved ones in their homes.
Some of them may receive family support while others may not want to confuse a loved one by relocating them setting to setting, Mason said.
Hospice staff consistently remind clients to care for themselves as they care for their loved ones, she said.
“We see a lot of decline in health when our caregivers are so focused on the loved ones that they don’t take care of themselves,” Mason said.
“We need that caregiver to be able to take care of our patients, too, so that’s a constant reminder for our team that we’re providing for the caregiver.”
Mason said the most significant need for caregivers is additional in-home support citing these caregivers may not be aware of available resources or may not be able to afford them.
“Many of our caregivers, they can’t go out of their home because they can’t leave their patients, or their loved ones,” she said, “even to go to the grocery store or to pay bills, just to have those outlets and take care of themselves.”
The Hospice of South Georgia will allow certified nursing assistants, or CNAs, to visit patient homes to help with bathing, Mason said. Nurses will also make medical visits.
“We try to make in-home care better,” she said.
Hospice volunteers will also sit with loved ones so caregivers can attend doctor’s appointments or go shopping, if needed.
“We try to fill gaps into what is needed for the caregiver,” Mason said.
Often times, caregivers are asked the question, “What can I do to help,” she said. She suggests creating a list of needs and having the list readily available when asked this question.
“Most people are genuinely wanting to help, but it’s our nature to try to take it all on ourselves,” Mason said. “That would be my number one recommendation is be open to help, be open to letting other people assist you, especially when they have that desire to.”
Hospice has volunteers who can sit with a patient. Hospice will also guide its clients to resources for paid sitters.
Like hospice, other programs throughout the Valdosta-Lowndes County area offer respite benefits to community members.
Caring through ACTO
At 1207 Williams St., Alzheimer’s Caregiver Time-Out is an organization that acts as a “social program for individuals with memory impairment” such as Alzheimer's, according to staff.
ACTO supplies respite 9:30 a.m.-3 p.m. Tuesdays through Thursdays by taking care of its clients’ family members who have been diagnosed with Alzheimer's or dementia.
Volunteers care for family members at ACTO’s center for $5 per day while caregivers receive a break from their daily responsibilities.
While with ACTO, patients participate in various activities with one another and receive homemade meals for breakfast and lunch.
Ann Walker-Smith, ACTO executive director, has been with ACTO for nearly nine years and also cared for her mother through three surgeries.
She’s been a paid caregiver for 12 years working previously with in-home care through a local agency.
“It’s not a job where you’ll get rich, but I’m always enriched,” she said. “It’s the hardest job I’ve ever done. It’s the most rewarding job I’ve ever done.”
What’s rewarding for Smith is the way her clients love her and the way she loves them though caregiving is emotionally draining, she said.
“I’m a natural born server, anyway. I was born to be a caregiver. … This isn’t a job to me,” she said. “This is when I’m at home. I love it because someone has to do it, and I love to give those families a break. They need it.”
Smith said she has had caregiver clients who cry and plead for assistance saying they don’t get a chance to sleep, go to the bathroom or anything else.
She said clients have told her they have had to quit jobs to take care of their loved ones.
Smith shared the story of one woman who approached her at an event, a woman who had been caring for her husband for two years while he battled cancer.
She said the woman told her that her husband eventually developed Alzheimer's. Throughout the two years, Smith said the woman never received a break from her responsibilities.
“She (the woman) said I was going to kill myself and him,” Smith said. “She said I couldn’t take it anymore, but I couldn’t leave him here without a caregiver.”
It was recommended she use ACTO’s services and she did. For a consecutive three days, the woman brought her husband to ACTO’s center.
ACTO rejuvenated the woman; she had someone to care for her husband while she received a break, Smith said.
“She said ACTO saved my life,” Smith said.
ACTO operates through volunteers and part-time staff such as Smith’s daughter, Andrea Kollman.
Caring for a Sibling
Though a paid caregiver now, Kollman has spent time tending to a close sibling when her brother was injured during a “traumatic” accident about 13 years ago.
The Ray City resident traveled to Atlanta where she cared for him for nearly five months.
“That was probably the hardest caregiving job I’ve ever had just because it was my brother,” Kollman said. “He wasn’t even supposed to be alive today.”
She remembers being the first person to see her brother in the hospital following his accident. She stayed by his side for days, never leaving him as she comforted him.
He’s had 32 surgeries since the accident, Kollman said, and he required around-the-clock care.
Kollman temporarily relocated and moved in with her brother. She cooked for him, bathed him, helped him get to the bathroom.
One of her brother’s friends gave her a break by taking her to lunch occasionally, allowing her to get out of the house.
Activities such as shopping for household items became enjoyable for her, she said.
“Some days I’d go and just tell him I needed to go get something even if I didn’t because it’ll make you feel like you need help,” Kollman said.
Though she would sometimes visit with her brother’s friend, she received little to no assistance. She said no one would help her.
“When they did come, it was never looking at the ocean of pain in my own eyes, just saying ‘are you OK,’” Kollman said. “And I battled with that because I’m just thinking how selfish of me to think that.”
Kollman’s passion for caregiving stems from the experience with her brother.
Aside from working with ACTO, Kollman gets paid to be a professional caregiver a few days a week. She even volunteers to visit with former clients.
She feels the world would be different if everyone lived their lives for someone else.
“This is the way that I try to live my life; that everybody that I meet, that I come across or that I’m able to do anything for, they see Christ through me; that’s my slogan,” Kollman said.
“If you can see Jesus when I’m sitting in front of you, then I’ve done a good job that day. That’s just why I do it.”
Caring for Parents
Robin Parks may be the activities director for ACTO, but she has been caregiving since her father was diagnosed with stomach cancer in 1995.
The cancer had spread throughout her dad’s body by the time he was diagnosed, she said.
Originally living in Texas, Parks moved with her two children to Valdosta upon learning of his diagnosis. Her husband, who was in the military, stayed behind.
Her daily routine became getting the children off to school, ensuring the needs of both her parents were taken care of and working with a neighbor who did landscaping.
Once the kids were home from school, she cooked dinner. There were days when she could barely get out of the car, she said.
“My dad liked to stay up late because he knew that he was running out of time so there was so many things that he wanted to tell me,” Parks said.
The cancer weakened her father; she was responsible for bathing him.
Her father died in 1996 but Parks said she didn’t realize hospice was an option until about a month before he passed.
Parks said she was told by a staff member at the military base that the first year of losing a spouse is the most difficult.
“Knowing that my mom was so close to my dad and so dependent on my dad, we decided we were going to stay here,” she said.
After her dad passed, her mom would have dinner nightly at Parks’ home. Parks said she noticed her mother required medical attention one evening.
After being put in ICU with congestive heart failure, Parks said she was told her mother was “near death.”
“She went from walking to not being able to do anything,” she said.
Through numerous medical problems and instances of rehabilitation, Parks took care of her mother.
She said before her dad died, she reassured him she would care for her mom.
While taking care of her parents, Parks was busy being a mother; not being afforded any “me-time.”
“You just do what you have to do,” she said.
With the phone calls from friends dwindling, Parks said it was as if she had been forgotten.
She said her mom realized close family friends had stopped visiting.
Parks eventually turned to hospice for support with her mom. Aides helped with baths three days a week, and Parks said she had consistent phone access to hospice staff.
Parks’ mother was diagnosed with dementia in 2010 and died in July 2013.
Caring for the Finances
Covered fully by Medicare, Parks’ mother was able to receive help with hospice at no cost to her.
This was a blessing to her, she said, as finances were at a minimum.
Before discovering hospice, Parks said she could not receive assistance though she searched for it. She did not receive any financial help, not even veterans benefits, she said.
No medical professional guided her to any resources, she said. She didn’t know “what to do.”
Parks said her mother was afraid to lose the family home and land.
“As long as we didn’t lose our land and our house, we were OK … You pay what you can,” Parks said.
Lisa O’Barr, who also uses hospice for her husband, has landed in some financial difficulties, as well, she said.
Relying only on her disability and her husband’s Social Security and military pension, Lisa O’Barr has been denied financial assistance because she has been told they have too much income.
"They add all of that but they don’t take in consideration expenses,” she said.
To add to monthly household expenses, which includes $850 rent and a $300, Lisa O’Barr is still paying on storage space for their belongings in Texas.
She said her husband spent 33 years in the Army and is still being denied veterans benefits.
The five-day respite program Lisa O’Barr uses with Hospice of South Georgia accepts Medicare, Medicaid and most private insurance, Mason said.
She said caregivers usually have limited resources.
“Sometimes our families, they don’t have the resources to financially pay for someone to come in and do that,” Mason said referring to employing paid caregivers.
ACTO survives heavily from donations, love offerings and fundraisers, Smith said. The Greater Valdosta United Way pays for one-third of the organization’s bills.
”Without them, we would go under,” Smith said.
To help with the costs of feeding ACTO’s clients, she said she clips grocery store coupons.
“We’re constantly working on our money and that is the most hardest, most strenuous part of this job is getting money for this,” Smith said.
Caring While Caregiving
Nancy Creel is a current ACTO board member and former activities director.
She was a caregiver of several years for her husband, Carlos David Creel.
The two married 29 years ago, and Nancy Creel was her husband’s sole caregiver from the time he was diagnosed with diabetes in 1991.
Diabetes caused Carlos David Creel to become blind and have renal failure. He also lost his leg and had bladder cancer, his wife said. In January 2018, he was diagnosed with Alzheimer's.
“If you do not take care of diabetes, it can cause lots of problems,” Nancy Creel said.
Part of her responsibilities while caring for him include giving him insulin shots and making all of his meals.
With experience caring for family members, Nancy Creel attended technical school to receive official education in caregiving. She went through a course to become a licensed practical nurse.
Prior to being employed by an agency, she worked briefly for family members. She works now for a family a couple of nights per week.
She advises other caregivers to keep their loved ones’ minds alerts and allow them to be active.
“That’s why a lot of them get where they can’t walk because they don’t get the exercise they need,” she said.
She suggests motivation and letting loved ones do as much as they can for themselves.
“Don’t ever say ‘you can’t do that,’” Nancy Creel said. “Keeping them shut in closes them up to be able to do anything for themselves.”
She recommends encouragement and independence.
Nancy Creel continues tending the needs of others, even after her husband’s passing, March 27, 2018; his 78th birthday.
To utilize the services of Alzheimer's Caregiver Time-Out, call (229) 245-9094. "There is a nominal fee of $5 per day or $50 monthly, whichever is lower, to help cover the cost of supplies that have not been donated," according to staff. ACTO accepts community donations and is located at 1207 Williams St. Visit actovaldosta.org for more information.
The Hospice of South Georgia and the Langdale Hospice House is located at 2263 Pineview Drive. The hospice provides grief support, a respite service and accepts volunteers. Call (229) 433-7000 for more information.
Amanda M. Usher is a reporter at The Valdosta Daily Times. She can be contacted at 229-244-3400 ext.1255.