Coming Home: Profiles of Adult Children Who've Depended on Parents After Stroke
Profiles of Adult Children Who've Depended on Parents After Stroke
Anita Thomas | Surviving by Faith
Survivor Sarah Henry with parents Anita and Bill Thomas
Anita and Bill Thomas of Springdale, Arkansas, had retired and were enjoying life. “We were pretty much homebodies, settled into a local church, had a nice garden, a big yard to care for,” Anita said. Bill had managed an insurance brokerage firm; Anita trained as a nurse but chose to stay home and raise four kids. On December 12, 2012, they were vacationing in Florida when they got the call that their only daughter, Sarah Henry, was in the hospital in Austin. That morning she had recognized stroke symptoms while driving her children to school and called 9-1-1 herself. Anita immediately flew to Austin and Bill drove over the next two days, as they had their car in Florida.
“Initially, it didn’t look serious after her first stroke,” Anita said. The doctors indicated there would be an easy fix with a stent in her carotid artery; however, when they put in the stent they saw that another stent would be necessary. When that stent was inserted to close off a carotid dissection, clots were released and a major left frontal lobe stroke occurred. The doctors did not offer much hope that she would pull through. Within a few days a craniotomy was done because of swelling. “The neurosurgeon said that was the last hope of saving her life,” Anita said.
The Thomases are people of faith and spent their time in the waiting room praying with her friends. “On Christmas Day (my birthday too), Sarah opened her eyes and squeezed my hand,” Anita said. “That was the turning point, when we began to have peace that God would heal her.”
The Thomases have 11 grandchildren, three of whom are Sarah’s. At the time of the stroke, Sarah and her husband were separated, as they still are, and the children stayed with their father while Sarah recovered. She spent a year in inpatient rehab and was released back home in December 2013. Anita and Bill kept their house in Arkansas but moved into Sarah’s home in March 2013.
Sarah with sister-in-law Katie Henry on one of her first post-stroke outings
At first, they feared that Sarah would have another stroke. Then about a year ago she had a seizure that scared everyone, but didn’t do any damage. She has continued to make good progress, though her right arm and hand are impaired and she has some difficulty finding many words. Her reading is also limited. “She has made much progress,” Anita said. “She’s off many of her medications and was able to go to the beach for a long weekend with a friend. She can cook when her children come over every other weekend. We try to look at the possibilities and not let fear dominate our lives. We recognize that eating right, exercise and much therapy makes a difference in the lives of stroke survivors. We aren’t taking anything for granted.”
Frank Sperling | Doing the ‘Automatic Task’ of a Parent
Drew Sperling had his stroke (sub-arachnoid hemorrhage) during Thanksgiving 2009. A sophomore in college, he was planning to have Thanksgiving dinner at a restaurant with his parents, who were driving from their home in Moraga, California.
Shelby and Frank Sperling were on the Pacific Coast Highway when they got a call from Drew’s landlord that he was in the hospital, and the hospital was trying to reach them. Through multiple dropped calls, they learned of their son’s condition. Dinner plans changed. So did a lot of other plans.
Drew was airlifted to Cottage Hospital in Santa Barbara where they had the appropriate surgical facilities to repair his aneurysm. After surgery, he was in a medically induced coma for five weeks. Cottage also had rehab facilities, where Drew stayed for four months. Living in a hotel, one parent was always there — Frank during the week, Shelby on the weekend.
Survivor Drew Sperling with parents Frank and Shelby
Frank is a business consultant, and he had just finished an assignment and was taking some time off. “When Drew was released from the rehab hospital, he came back home with us,” Frank said. “We re-arranged our house so that he could stay in a hospital bed in our first-floor family room. I chose not to take on any additional consulting assignments in the short-term and be home for Drew.” When he returned home, he had lost one third of his bodyweight, could not walk or use his right side, and he had a three-word vocabulary (no, b-r-r-r and the F word). He had also lost the peripheral vision on his right side.
While they did not know how long it would take for their son to complete a full or partial recovery, they were committed to help him at all costs. “My wife had superb healthcare through her employer,” Frank said. “That made the decision for me to stay home with Drew a lot easier to make. However, that did not ease my transition from being the primary bread-winner to stay-at-home dad. That was very different from what I had envisioned as my role in our family. I have never regretted this decision and there is no doubt that Drew would not have progressed as far as he has without my support and role as his advocate.” As an example, he tells how the insurance company tried to drop Drew because he was no longer a student. Frank called and explained that Drew was no longer a student because he’d had a stroke. The company backed off and has not questioned a single charge, though the bill for the first five weeks was $1.6 million.
Frank has devoted himself to Drew’s care while Shelby continues her job as the office manager of a law firm. They have downsized their home and moved to reduce expenses commensurate to a one income family. Their social life has changed; they don’t go out much. There are no impromptu trips, like to see their daughter in Boston; travel requires a lot of planning.
During Drew’s recovery, Frank has been his caregiver. The Sperlings never hired nurses or aides, though therapists came once a week. “In between sessions, I worked with Drew on the exercises they taught us,” he said. A part of Frank’s caregiving role has been medication management — Drew takes 12 different pills, some several times a day. Frank fixes breakfast and lunch; Shelby fixes dinner. As Drew has improved and gained independence, Frank’s responsibilities have lessened, but he is still a caregiver as well as a father.
Now age 60, Frank is concerned about going back to work after so many years away from his industry. “I probably can’t go back at the same level of income,” he said. But he has no regrets. “I have a lot of satisfaction knowing that I have helped his recovery. We are constantly doing exercises. I never really gave caregiving a thought. To me, this was an ‘automatic task’ of a parent.”
Today Drew easily walks on his own, and he and Frank often take long walks together. His right side is doing better and his aphasia is greatly improved. “I take him to at least six therapy sessions each week plus we still do our own exercises and therapeutic activities,” Frank said. While Drew is not yet fully independent, there are many activities that he does on his own, and he plans to go back college in 2015.
“When Drew woke up from his coma, he had a journey of a thousand miles, and he has travelled far, far down that path,” Frank said. “If I had gone back to work, and we had brought in professional caregivers, he wouldn’t have progressed as far. That gives me a good feeling.”
Susan Schuerman | Faith, Hope and Pure Determination Are Required
Survivor Jenifer Schuerman on her graduation day
When Susan Schuerman heard that her daughter Jenifer would likely never recover from her stroke at age 21, she didn’t go into despair, she went into overdrive. Susan and Jenifer were celebrating her 21st birthday in Las Vegas in May 2004, when a clot passed through an unknown hole in her heart (called a patent foramen ovale or PFO) and caused a massive stroke in her right cerebral hemisphere. “The doctors told me she would probably not live,” Susan said. “I was devastated.”
Two weeks later, the doctors said she would survive but would have to be put in a nursing home. “That was not going to happen,” Susan said. Although she was working full-time as deputy county administrator for the Maricopa County Board of Supervisors (Arizona) and has had Crohn’s disease for 30 years, Susan brought Jenifer home and began the arduous task of rearranging her life to take care of a severely disabled adult. Thus began Susan’s education about insurance and rehab caps. Jenifer was on her mother’s insurance when the stroke occurred. Susan got her on SSDI (Social Security Disability Insurance) and Mercy Care, which is Arizona’s version of Medicaid, as quickly as possible. Jenifer went through a year of out-patient therapy, which got her out of a wheelchair, but that was not enough.
Eventually Susan, who is now 60, took early retirement and made getting Jenifer the care she needed her focus. “I just would not take no for an answer,” she said. “I made friends with every secretary at every insurance company, and they would tell me when their bosses went to lunch. I would show up and ride the elevator with them. I told Jenifer, ‘I don’t care if we have to sit in the lobby and sell pencils, they are going to deal with us.’ I made sure she got the care she needed. I’m sure every insurance company I ever dealt with despises me.”
When insurance wouldn’t pay for a Bioness H-200 hand system to help her gain function in her hand, Susan called “Dr. Drew’s Life Changer Show,” and they flew her to California and paid for the system. Jenifer, who has foot drop, also uses the Bioness L-300, which allows her to walk independently. But she is still partially paralyzed on her left side and has little use of her left arm.
Today Jenifer, who is 31, is covered by her mother’s major medical as well as Medicare and Medicaid. “Insurance is the biggest hurdle you have to overcome,” Susan said. “They will only do what you force them to do, but if you continue to press, they will give it to you. If I see she is getting weaker, I go get another ‘script for therapy.”
Recently Susan built a guest house behind her home so that Jenifer can have some privacy. She lives mostly independently, but Susan is nearby and interacts with her multiple times a day. Mercy Care pays for four hours of homemaking services each week.
Susan has had to give up her dreams of a relaxing retirement or new relationship. She doesn’t travel because she can’t leave Jenifer overnight. This year Jenifer graduated from Arizona State University with a degree in social work. Susan doubts she will ever be able to work because of fatigue and her executive function is still impaired.
“At first I was angry that all this happened,” Susan said, “but I learned that I am stronger than I ever imagined and that it would be up to me to meet the challenge to provide Jenifer with all the tools necessary to get through this life-altering event. I learned that faith and hope as well as pure determination are required. I learned coping skills that I never imagined possible. I learned to accept small victories and not concentrate on the long-term. I learned to be grateful for the daughter I have today. You have to accept life on life’s terms. I have changed my life to make her life as normal as possible.”