A few months into this project, I was at home one evening and received two different texts both informing me that I really needed to interview this woman.
On the day of our interview, I arrived early, and parked in the driveway of her beautifully manicured yard and home. She came out and invited me in, finishing up some quick cleaning as we settled into our interview. Several hours later, I ran out of time, and we had to postpone the end of our talk until much later.
As I interviewed her and transcribed our interview, I realized I would probably not have room to include all of the experiences she has had as a caregiver. Her life has been full of so much heartache, and so much beauty. Today I honor a woman named Joyce. Joyce has seven children, four of whom are still living, now adults.
When Joyce was a young girl, she had two older sisters. But if her mother was ever sick and needed lengthy care, she had Joyce stay home from school to take care of her. This was an early sign in Joyce’s life of what was to come.
She chose not to go to college because her ambition was toward motherhood. While I define all parents as caregivers, in Joyce’s mind, she became a caregiver after her son Todd was born. Joyce had three children at that time, and the oldest one was five years old. This was her fourth pregnancy. Her water broke, and she went to the hospital. The doctors did an X ray, and several other tests. While the doctor was on the phone, she stood waiting to use the phone to call her husband. When the doctor hung up he said, “By the way, Mrs. Swyers, did they tell you you are going to have twins?” She must have looked like she might faint, because the doctor pushed the chair he had been sitting on over for her to sit down. Her husband Terry was in the Navy, and due to ship out for nine months. He left a week after the twins were born.
Shortly after the twins, Troy and Todd, were born, Troy got a fever and had to go to the hospital. It turned out to be something minor. Then Todd had a fever, too. He had to stay in longer, and it was soon discovered that he had a congenital heart condition called tricuspid atresia. He was missing the lower right chamber of his heart. The Red Cross was able to bring Terry home, and he was given shore duty because Todd was not expected to live.
The caregiving for Todd was intense. She tried not to show favoritism, and would hold them both, often feeding them every three hours. When they got a little older, Joyce had to prepare all of the baby food. Because of Todd’s heart problems, he could eat no salt. Luckily, they lived in California where a lot of cauliflower and broccoli are grown. She would get cases of vegetables, steam them, and freeze it in ice trays to feed to the babies.
Joyce couldn’t let Todd cry, because due to his poor circulation he would be unable to catch his breath. His fingers were blue, and clubbed. Troy was a blessing, because he was a very patient baby. If Todd cried, Troy would be quiet and let his mother take care of him.
They were living at Fort Ord, and Joyce traveled with Todd to doctors appointments in San Francisco. Once, at a regular appointment in San Francisco, she found out that Todd needed to have surgery right away. Her husband, Terry, drove to the hospital. Her mother-in-law and father-in-law also drove from Las Vegas to be there. When the doctors came out of the surgery, they said it was a success. She felt very excited. His fingers were pink for the first time, although he still had breathing tubes. The baby seemed to be doing so well that her in-laws left to go home.
The doctors put Joyce in a room to rest, while they attended to Todd because he started to go downhill. Soon they came and told her it was not going well, and that they were going to put a pacemaker in him. They did, but Todd didn’t make it. Todd had lived to be 15 months old, and weighed 15 pounds when he died. The doctors attributed the length of his life to his mother’s love. Joyce wanted to hold him after he passed, and she marveled at his pink fingers.
Later, as she went out to the car, she remembers people laughing and talking. Even though it was nighttime, she thought, “How can the world go on? How does it go on when we are hurting so bad? How can people be happy?”
They had Todd’s body sent to Las Vegas and had a funeral there, so that he could be near family. She dressed his body for the burial. When she went home, it seemed so far away. It was hard for Joyce to leave him such a distance from where they lived in California.
Time passed. The family settled in the Mira Mesa area of San Diego. Terry was eventually ready for retirement from the Navy, so they started and opened a lawn mower store. Terry put in for retirement, but it was not granted at first. Joyce ran the store, and Terry did the repairs when he was off work.
One day in August, when Joyce arrived home from singing practice in a church ladies’ choir, the military police were at her door waiting for her. Her husband was in the hospital. She had to pick the children up from school and have a friend take them. At the hospital she was told that Terry had had a stroke and was totally paralyzed on his right side. She was 33 years old, and he was 38.
She would often go see him at 4:00 in the morning while her children were asleep. She started teaching her oldest daughter how to cook. Her ward brought food, but she eventually had to ask them to stop because they ended up having too much food.
After finding out they were expecting their seventh baby, she thought that Labor Day would be a great day to tell Terry. She made fried chicken, baked beans, and potato salad. She and the children took a picnic to the hospital. When they arrived at their picnic, the spirit told Joyce it wasn’t a good day to tell Terry.
Another day, when she was pushing Terry’s wheelchair in the hospital, she felt like it was the right time. She stopped his wheelchair in a corridor, looked him in the eye, and said, “Terry, guess what?” He said, “I know. We’re going to have another baby.” She felt that the spirit prompted him when his spirit was ready. He told her later that on Labor Day he was so concerned about how he would support and provide for his family. She was grateful she had waited to tell him.
He was in the hospital for a long time. When he came out, he was still totally paralyzed on the right side. They had to put a ramp up to their front door for his manual wheelchair. Joyce had to cut his food. It was very hard for him to take a shower. He was bound and determined to be as independent as he could. He had a doctor fit his paralyzed leg with a brace so that he could swing it up and do some things standing up.
It turned out to be a blessing that his retirement had been denied, because their military insurance covered many of his medical needs. They were eventually able to buy him a powered wheelchair, which made it easier to get around on the carpet at their house. They found an old school bus for handicapped children at an auction, and bought it to improve his independence even more.
Almost a year to the day after Terry’s first stroke, he had a second one. After the second stroke, they were told that Terry would never regain his mobility. This time he lost his speech, and had to write any communication with his non-dominant left hand. Joyce had to take care of her husband with all of his needs, a new baby, as well as running their family lawnmower business. It was a nightmare.
Terry needed a test that might endanger his life, so the doctors encouraged him and Joyce to get away together before the test. They dropped their children at Joyce’s parents’ house in Las Vegas, and drove to visit some cousins Terry loved in Hurricane, Utah.
Over time, Terry was able to regain his speech, to the surprise of the doctors. He had his father-in-law start to watch for property in Hurricane. They found a piece of property with an unfinished basement, and nothing else. Terry drafted the plans to accommodate his wheelchair, so that he could visit his children in their rooms, get to the kitchen sink and bathroom counter.
Joyce and her family sold the business, sold their house in California, and moved to a temporary location in Hurricane during the construction of their house. When the family first got to Hurricane, one of the kids asked, “Where are the sidewalks?”
Another child said, “Why do they need sidewalks? Do you see any people?”
She helped Terry with dressing, showering, and getting around during this time. He tried to do everything he could do himself, sometimes exhausting himself in the process. At one point, Terry was on the city council. At that time he was confined to a wheelchair. One time on a trip to Salt Lake City by himself, he was not able to pump his own gas, so Joyce always had to go with him after that.
Terry and Joyce had a very large home. One half of their downstairs was living quarters for her mom and dad. Her dad helped her with their property. They had alfalfa and 219 fruit trees. However, her dad passed away of a heart attack soon after Joyce and Terry’s oldest son, Jeff, left on an LDS mission. When she stood over her dad’s casket, she told him she would take care of her mom. Her mother eventually had macular degeneration. Joyce had to do more things for her mother.
One day at church, she needed to go speak at another ward. When she tried to communicate that to Terry, she could tell that something was wrong. They took him out in to the foyer, and they called for an ambulance. Someone did CPR. He started to come back. By the time the EMTs came, he was conscious again. They evaluated him and said everything checked out okay. She could decide whether to send him to the hospital or take him home. She took him home. She had to spoon feed him and do everything for him.
Terry went to the sealing when their oldest son Jeff married his wife, Lori, but he had to go home right after. Then he was at the reception for pictures, and had to be taken home again. After the wedding, Joyce gave Terry constant care. Her mother lived downstairs, and was helpful with meals and the family.
Joyce went to the temple every Wednesday morning. Her mother checked on Terry while she was gone. She thinks that being in the temple regularly helped her survive the challenges of daily life.
At Christmas time, their daughter Jolene went to Las Vegas with an aunt to help her with some cleaning. Joyce was attending a funeral in a nearby town when a policeman came and told her that her daughter had been in an accident on the way back from Las Vegas, and Jolene was in the hospital.
Joyce hurried home to get Terry, but he had already gone to the hospital. She followed immediately. Jolene and her aunt and cousins had been driving to Utah on the freeway. Jolene had unbuckled from her seat in the front to help the other girls with homework in the back seat. Jolene was thrown from the car. At the hospital, they were pumping and breathing for her. She had many serious internal injuries. She would face the possibility of dialysis. Her head was wrapped in bandages. The plan was to life flight her to Salt Lake City.
Joyce and Terry quickly drove home to pack. As they were getting ready to go out the front door, she got a phone call from the social worker. He told them that the plane carrying Jolene to Salt Lake City was turning back. She knew what that meant. Jolene wasn’t going to make it. They had to go back to St. George.
When Jolene was a little girl, she would often say, “No way, Jose.” Joyce could hear Jolene saying in her mind, “No way, Jose. I’m not putting my mother through that.” Joyce wept as she told me that she was already a caregiver, and she felt like Jolene didn’t want to put her through more caregiving work.
The accident happened on the 19th of December. Joyce and Jolene had planned to make Christmas cookies together that afternoon. It was their tradition. Joyce still made the cookies later, after the funeral but before Christmas. One of the hardest things for Joyce to deal with were the unopened gifts under the Christmas tree. When she is asked to speak to groups of people, she reminds people to look within to find their unopened gifts.
As I listened to Joyce tell this story, I could not imagine a more painful situation. Then she told me about a spring night in March. She told me all of the conversation she had with her son Jared on that particular night. At bedtime, her son came to hug her and her husband goodnight. The spirit confirmed to her Jared’s love for her. Terry later told Joyce that the same thing happened to him that night. Soon afterward, she heard a sound. “Whoa,” Terry said. “That sounded like a gunshot.” Joyce immediately searched the house and could not find Jared. She went outside, and got in their utility cart, continuing her search. In the meantime, Terry called the police. She prayed, “Heavenly Father, it’s too dark out here. How am I ever going to find Jared?”
She came to a part of their property with a brick wall, and as she did she could see enough to know she had found him. Terry and Officer Brent Nelson came at the same time. She said, “I’ve found him. There he is.” She asked, “Is he still alive?” She didn’t go closer. She went to Terry. Officer Nelson came to her and said, “No, Joyce. He’s gone.” Jared had committed suicide. Out of the blue. She remembers leaning against the brick wall, with her hands in the air saying, “Oh, Mercy! Mercy! Please have mercy on me!” She prayed for mercy. Officer Nelson held her in his arms, which meant a lot to her because it was difficult for Terry to hold her since he was wheelchair bound.
She never cried so much in her whole life. She cried and cried. Others would try to console her, but she couldn’t be consoled. She spoke of when the Savior died, the gnashing of teeth, the howling. There was no consoling for her that night. Brent Nelson went in with them, and helped her put Terry to bed. He was completely spent. Terry’s body began shaking from the trauma. He had to be taken to the funeral on a stretcher in the ambulance. He was later diagnosed with MS.
Her youngest son couldn’t sleep in his own bed after that. He slept in his parents room on the floor for months and months. Terry had a counselor coming every week to help him deal with his pain, and after Jared’s death, Joyce started going to the sessions as well.
Something I loved about Joyce from our interview was her honesty. She said, “After I had been in counseling about two years, I had a visiting teacher. She had taken care of her husband for about 15 years with MS. Eventually she ended up having to put him in a care center. After my visiting teachers left I went in and told Terry about her. He said, “You’d do that for me wouldn’t you?” I said, “Yes.” All the time thinking, “HELL NO!” There’s no way I could do that. It was so hard. He was a military man. “Do it this way. Do it that way.” As time went on he was so grateful for every little thing that I did for him. He was so grateful.”
Over time, her son convinced her to have an outside person come in and help with Terry’s bath or shower. It went against her routine, but over time she came to appreciate and rely on that help.
For two summers Joyce and Terry had six of their grandchildren spend their summer days with them while the childrens’ parents worked. Joyce took them to play at parks, and had them help make picnic lunches. The children brought joy to Joyce and Terry, and gave them more opportunities to serve and teach.
She told me of the challenges of taking care of her mother, who eventually lost much of her vision to the macular degeneration. She helped take care of her mother-in-law’s home, and later remodeled her other half of their downstairs so that her mother-in-law, Jennie, could move in with them. Jennie was friends with Joyce’s mother. Each mother had her own place. Joyce did their shopping, took them for their appointments, etc. Every Saturday Joyce would curl their hair. Eventually her mother in law passed away of pneumonia.
Years later, on a fast Sunday, her mother got up and shared her testimony in church. She expressed love and gratitude for Joyce. Some people said, “That sounds like a farewell.” When her mother sat down, she was playing with her tissue, and Joyce worried that her mom was fretting about what she had said. It was hard for her mother to stay for all of church, so one of the young men in their congregation would take Joyce’s car and drop her mother at home so that Joyce could lead the children’s music every Sunday. Joyce turned to her mom and said, “Mom, are you ready to go?” She didn’t answer. Joyce said again, “Are you ready to go?” She said, “I don’t know. Am I?” Joyce said, “Mom, look at me.” Joyce could tell from the look on her mom’s face that something was wrong.
They called 911, and her mom was taken to the hospital in an ambulance with a massive stroke. Joyce had promised her dad in his casket that she would take care of her mother. Her mother came home from the hospital that same day. Her mom told Joyce how much she loved her, and how much she loved God and her Savior. All of Joyce’s siblings came and were able to say their farewells. Joyce’s mother passed away that Thursday.
Joyce had always prayed to be able to take care of Terry at home until the end, and she was able to do that with help from her family. There were many things that the nurses showed her how to do, but she thought, “Oh no. I’m not doing that. There’s no way.” But she did end up doing everything anyway. She said, “Being a caregiver is hard. You lose yourself.”
Terry spent 16 years being bedridden. Toward the end, he required a lot of care. Much of the family helped by sitting in the room with him if Joyce was outside of the house. Her children and grandchildren helped watch him constantly. They had to make sure he didn’t try to get out of bed.
The Wednesday before Terry’s last Thanksgiving, Joyce was in the temple when she had the feeling that Terry’s time was drawing close. On Thursday, for Thanksgiving, he was able to come to the table for dinner, which was unusual for him. The family had a joyous meal and celebration together. When Joyce felt the time was right, she told her husband of her impression. He responded that he had the same feeling—that it wouldn’t be long.
The following February, one Wednesday morning Joyce felt that she should stay home from her normal morning at the temple. Terry woke up pain free, and they talked. The home health nurse came to draw blood, and when it was tested the doctor ordered an immediate re-draw. Terry’s levels were off, so they went to the hospital. Terry had a treatment, and went home. Prior to this trip to the hospital, the family had decided Terry would go on hospice as soon as they could get him in to a doctor. Everything fell into place, and Terry passed within 24 hours of beginning hospice care.
After all the years of care, Terry’s quick passing took Joyce a little by surprise. She had thought she would have a few days at least, and some of her children didn’t even make it to say goodbye in time. When the people from the mortuary came, they were very compassionate. Joyce felt good to see Terry finally in relief from his pain and at peace.
Joyce was happy that she had held on to her faith through everything. She didn’t have hobbies or groups, but she went to church every week, and attended the temple regularly. Those activities helped her get through.
I asked Joyce if she ever had any moments when she knew how valuable her work was. She said one day as she was helping Terry put his socks on, the spirit spoke to her mind and said, “Inasmuch as ye have done it unto one of the least of these, my brethren, ye have done it unto me.” Joyce spoke of her mother. She said, “Sometimes we like to give service to other people.” That was the kind of service she had seen her mother give, even when her mother was going blind. It was difficult for Joyce to not have the time to serve people outside of her family as she wished she could. She knows that she felt the Lord’s hand helping her do the things she had to do, many times.
As Joyce spoke of her love for caring for her children, her home, her parents and her husband, I could just feel her incredible strength in the face of the terrible challenges she has faced. She is amazing. Thank you so much for sharing your strength, Joyce. I honor you.