Joan and George Beley brought up two pretty good daughters. Since suffering severe complications from heart surgery a year ago, Joan Beley has needed those two daughters every step of the way.
Michelle Brown of Brunswick and Renee Bernier of Damariscotta have advocated for their mother from one facility to another, through inconsistencies with Medicare and through medical setbacks. Today, the Beleys live in an addition to the home of Renee and Robert Bernier, and Joan Beley is getting along better. The family just celebrated her 80th birthday on April 12, in fact.
Beley’s story reveals the need for family caregivers when the health care system fails. It’s also a familiar one to baby boomers, who have been taking care of their parents for years.
The experience has been a long, tough haul for parents and children.
“I don’t think she would have survived without my sister and I,” Brown said. “I can’t imagine what would have happened to her if she didn’t have her family.”
“I get emotional when you speak about my daughters,” Beley said. “I couldn’t ask for more loving or attending daughters. There is nothing I wouldn’t do for them. Nothing.”
Beley said that her husband, who is 83, is sound of mind and can manage everyday affairs, and she gives credit to her son, Douglas, who helped manage some of their affairs from afar in Texas. She doubts she would be around without Brown and Bernier.
“I’m just thankful,” she said. “I got discouraged at times, but they told me I could do it.”
Brown, 57, lost her job as a pharmacy technician last September. Her husband supports the family working as a government contractor in Maryland, and manages to get home every two weeks.
Bernier has a full-time job but has had to use all her vacation time to make the trips with her sister to Boston, to New Hampshire, to Lewiston and more.
All the while, Brown says, they endured a Medicaid snafu because a social worker didn’t know that George Beley’s military coverage picks up where Medicare leaves off. A week’s stay at a small, private homecare residence led to more complications, Brown says. The one positive they can point to, outside of the family, is St. Mary’s Regional Medical Center in Lewiston, where Joan Beley finally began her road to partial recovery.
The family odyssey began last May, when Beley had a second open-heart surgery. Surgery to a heart valve in 1994 was successful, Brown said, and Beley resumed her active life, which included golf.
But matters went downhill, and quickly, when Beley underwent surgery on a second valve in Boston.
“She didn’t wake up well,” Brown recalled. “She was out of it for 24 to 48 hours. When she did awaken, her brain function wasn’t right. It really looked as if she had a major stroke. Doctors guessed it was a spinal embolism, and implanted a pacemaker. As she came around a little bit more each day, it was evident she didn’t have any movement from the waist down.”
Two weeks went by, and Beley couldn’t speak. She fell over to her side on the pillow, and caught what Brown called a “hospital-acquired infection.”
“At one point,” Brown said, “I called my brother in Texas, and I really didn’t know if we could bring her back from the hospital. At the end of the week it was evident she wasn’t going to get much better than she was.”
It was at that point Brown and Bernier learned that their mother needed what she called an “LTAC,” or long-term acute-care hospital. Trouble is, Maine doesn’t have one. Beley was too sick to go into a rehabilitation facility, not sick enough to be in a hospital. All the while, she was having difficulty swallowing.
So for the month of July 2013, Beley stayed at a long-term, acute-care hospital in Portsmouth, N.H. She was “weaned off” her feeding tube there, Brown said, but still unable to walk.
“My father and I traveled every day to Portsmouth,” Brown said. “I was still working three days a week. But the length of stay at all these places is (limited) by Medicare. Toward the end they didn’t work with her as much. She had no feeling below her waist. After time, that feeling has come back.”
So after a month, the sisters were back on the road, seeking a suitable place for their mother to stay. The Beleys still had their home in Rockland. The sisters wanted a good rehab center rather than a nursing home, and they drove all over. Then they found St. Mary’s in Lewiston.
At the end of July, Brown and Bernier were able to place their mother in a room that had a nearby gymnasium for rehab.
“My father stayed right there with her,” Brown said. “They stayed there through September, and she really started improving. They really did an amazing job. I can’t say enough good about them.”
“The rehabilitation was wonderful,” Beley said. “They were, too. They took care of me.”
Beley’s tribulations, however, were anything but over.
She wanted to go home. So Brown helped her sister and husband, Bob, build a ramp at the Beley’s home in Rockland, and they installed safety measures in the entire home
“It was very, very hard,” Brown said. “As much as they wanted to go home, being home can be overwhelming. I got up there almost every day.”
Beley then took a fall, and experienced intense pain in her leg. She went to a hospital in Rockland, and that’s where the Medicare snafu kicked in, Brown said.
“The Medicare time was out, and they suggested a nursing home, which would have been expenses out of pocket,” Brown said. “A nursing home would have been $300 a day out of pocket. A woman in Union does private care out of her house. We did that for a short period. Medicare could restart. She was there a week. My sister and I were visiting regularly, but she wasn’t happy. I noticed my mother wheezing on the phone. The caregiver said she does that when she gets excited, but something was not quite right. An ambulance came because she couldn’t breathe. She had congestive heart failure.”
Beley went back to a Rockland hospital.
The entire episode at the private facility would not have been necessary, had a social worker known that her father’s military Tricare benefits kick in when Medicare payments expire.
“My mother would never have had to go to that house, and never would have had congestive heart failure,” Brown said. “The first social worker didn’t know that, the second one did.”
So Beley was in need of further rehab.
“She said, yes, she would get it, where do you want to go?” Brown recalled. “I said, ‘St. Mary’s.’ Tricare paid.”
Beley recovered enough at St. Mary’s to live on her own – sort of. The couple is selling their home and had an addition built to the Bernier’s home.
“I was going to do it,” Brown said. “But my situation was totally unstable. A retirement home would have drained their savings in two years.”
Today, Joan and George Beley are self-sufficient, with a one-bedroom addition that connects through French doors to the Bernier’s home. Bob Bernier gets home from work at 3:30, and Renee an hour later.
“I call her daily,” Brown said. “She’s doing well, walking with a walker. There’s still some health issues, but we’re on top of it. She’s doing outpatient rehab three days a week. I go there twice a week, and bring back their laundry to do.”
Brown heaps praise on her sister and brother-in-law, who have been so instrumental to a bad story turned good.
“My sister and I are best friends, and I couldn’t begin to imagine doing any of this without her,” she said. “We knew she couldn’t go back home. She still needed too much.”
It was a trial for all, she said, but one worth doing.
“Traveling back and forth every day uses a ton of gas,” Brown said. “I’m not employed anymore, and I started feeling the pinch. You’ve really got to be optimistic. You’ve got to reach down deep inside sometimes. I see more light at the end of the tunnel because my mother is getting better.”
Fresh from a physical therapy session, Beley said doctors are hopeful she will be able to walk without the assistance of a walker or a cane. She doesn’t dare do that quite yet, for fear of falling.
“I’m feeling wonderful,” she said. “It’s been a long road. My daughters went through more than I did. Half the time, I didn’t know what was going on.”
Larry Grard is a staff writer at Current Publishing.