This is Karen (left) and her sister Maylene (right).
Karen came to live with her parents and help her dad care for her mother, Carol, two and a half years ago. She had come home for Christmas and noticed that her mother needed more assistance. That February her mom had declined more, and would soon begin dialysis. Karen’s father took care of the dialysis himself, and Karen started to worry that there was no back up. She felt the Lord prompting her, and it became a spiritual journey. Karen called her sister, because she wanted Maylene’s support. She said, “I couldn’t have done it without her.” Maylene was very supportive.
In June, she called her parents and told them she planned to sell her house in Arizona and move to Southern Utah with them. She did not ask. They were both in denial. They told her they did not need any help. A few weeks later, she told her mom on the phone how strongly she felt about it, and that the Lord was calling her to do it. “All you need, Mom, is for Dad to have a heart attack. Or you could fall and go into the hospital. Who is going to do your dialysis at home? There is no back up. Beside all of that, I feel strongly that this is what the Lord wants me to do, so this is what I’m doing.” Her mom thought about it, and she prayed about it. Her mom stopped giving Karen a hard time about it, although her dad still said, “I’m fine. We’re fine. We can handle it.”
One day on her way to a campout, Karen called Maylene and said, “They are one incident away from needing help.” The day after that conversation, her mom had a fall in the bathroom at a furniture store. She hurt her hip and her shoulder. Her mom was very scared, but had not gone to the emergency room. When her parents finally went, they didn’t tell the doctors about her shoulder pain. Her mother didn’t walk much from that point forward, although Karen did not find that out until later.
Karen put her house up for sale within two weeks, and sold it in two weeks. She moved in with her parents the weekend before her mother’s first surgery. While her mother recovered, her father did her night dialysis at the rehab facility. He started it at 10 p.m., and had to be there at 7 a.m. as well.
The night her mother came home from her first surgery, she fell in the bathroom and reinjured the surgical site. This required another surgery.
Unbeknownst to the family, when Carol went into dialysis, she began to descend into depression. The dialysis impacted her ability to travel, which she had loved. She couldn’t take a bath, which she had loved. Her joints started to swell and become puffy. She couldn’t sew because of lack of mobility with her hands. Sewing was her love. She made tons of quilts. When she came back and fell, that put her in more depression.
For Karen, the hardest part of caring for her mother came when her mother went into the hospital after her second fall. She was there for 27 days, and the doctors could not figure out what was wrong with her. She had kidney problems because of narcotic buildup, and pancreatitis. But eventually doctors had checked everything they could, and her mother was still not waking up. The doctors said, “Maybe she’s dying.”
“Are her organs failing?”
“Then why are we having this conversation?”
After checking every single organ in her body, she still wasn’t waking up. The last option was depression. Her dad had a hard time dealing with that possibility. They put her on an antipsychotic, and three days later she started to come back. Once they finally knew what they were dealing with, they could deal with it. Of all of the challenges Karen faced in caring for her mother, not knowing what was wrong was the hardest.
Another challenge she and her family faced was role confusion. When her dad was caregiver, husband, provider—he was everything to her mom. Karen could relieve her dad. Sometimes her mom wanted Karen, other days her dad had to step in. They tag teamed. Her dad has a need to be needed, so trying to help without getting in his way was a delicate balance. Uncharacteristically, he did let Karen care for all of her mother’s wounds. Carol was injured on her wheelchair several times, and Karen’s dad let her take care of all of them.
One of Karen’s favorite things about her time caring for her mom was going on drives. Carol loved pussywillows. They found some out at a nearby national forest. Her mom had never been back there. They were just driving along. All of a sudden Carol inhaled sharply in surprise. Karen slammed on the brakes, looking for the deer she must be about to hit.
“Pussywillows right over there!”
They always kept clippers in the car to get things like that. Her mom had a smile from here to Alaska. Karen just cracked up at her mom’s reaction.
One day Karen went to work, and afterward went to dinner with friends. She knew where her parents had decided to drive up to Kolob, a nearby reservoir in the mountains. They left about noon. When she came back at 6 or 7 p.m., they weren’t home yet. “That’s weird.” She waited. Nine o’clock rolled around, and they still weren’t home. She called some friends in Springdale to ask if they would check the restaurants if they were there. It was off season, and no one was at Jack’s where they usually went. Her friends started driving around to look for them.
At 10:00 p.m., she called a girlfriend, and said, “Should I be worried?” “Hell yes!”Her girlfriend and her husband came over and stayed with her until 1:00 a.m. Karen kept saying, “I’m sure they’re fine. I’m sure they’re in the car somewhere. Something has happened.” Her friend said they should open a report. The police all went out to look for them, along with friends. Karen asked, “Should I call my sister?”
“I would call her.”
Her sister was in a dead sleep. She called the home phone. The cell phones were turned off. She kept calling and leaving messages, “Maylene, wake up, wake up! It’s Karen, I need to talk to you.” The third or fourth time she called, Maylene’s husband woke up and woke her. She finally answered the phone.
“What’s going on?”
“Mom and dad are missing. ”
Of course Maylene freaked out.
Karen’s friend called all of the hospitals, including as far away as Las Vegas. Her friend’s husband went out looking, and he didn’t see anyone on the road to Kolob. Karen was relatively calm. By 2:00 a.m., she had pretended to go to bed to allow her friends to leave. She kept waiting, and talking to her sister when she called every 20 minutes. A police officer called. “We found them. They are on a road off of Kolob reservoir. They are fine. They are safe. We are going to get them down.” She got in the car and drove up to Kolob. She followed the tow truck, because she knew he was headed to the same place.
The tow truck passed the reservoir, and turned off on a dirt road, which Karen never knew was there. They found her parents. She jumped out of the van. It was 9,000 feet above sea level. It was April, windy, clear, and SO COLD. Karen was completely unprepared. She brought water, she brought snacks, but she didn’t bring a coat. The policeman came to get her and said, “You’re mom doesn’t walk. That might have been something you wanted to tell us.” Their transmission had gone out around 5:00 pm. They had blankets, food, and everything they needed. Her dad had trudged through the mud, but decided to wait to try again until the mud froze. Because of the mud it was very hard to transfer Carol to the other car.
Search and Rescue had also been called, and four vans or jeeps filled with 20 guys showed up. The tow driver towed the car down to the reservoir to where it would be easier to transfer her, and all the search and rescue guys helped move her over. Karen liked to tease her mom, “It took twenty guys to move you!” All she did was stand up, turn around, and sit down in the van. It was 5:30 in the morning when they got home. They were exhausted. They said, “We kept thinking you would just drive up and find us.” That had never crossed Karen’s mind, and even if it had she never would have found them, because she hadn’t known that road existed. Carol kept talking about how beautiful it was. The stars were out. The moon was gorgeous.
Eventually Karen and her dad decided to put her mom on hemodialysis, which involves going to a center for dialysis three days a week. Home dialysis had been taking its toll on her dad. With that decision came the complications of transfer. It took a lot of time to load her, travel to the center, and come back. Her dad was the primary driver, but sometimes he let Karen take over. It often took both of Karen and her dad to transfer, toilet, dress Carol, and meet her needs. Carol slowly lost function. Karen worried that she was stepping on her dad’s toes. He wanted to be the primary caregiver, but sometimes Carol just wanted Karen to put her to bed.
Karen’s mom eventually had to go in for another planned shoulder surgery. The standard form calls for a narcotic, and Carol received one, although Karen’s dad had told the doctors not to give Carol any. The narcotic wiped her out, and she started having breathing trouble. She ended up with pneumonia, and then a GI bleed followed.
Karen decided that if her mother had to go back into the ICU, she would call Maylene. As soon as the doctors said it was necessary, she called her sister. By the time Maylene arrived from Florida, things had gone downhill more. Their mother decided to have a surgery that had a 10% chance of survival. As she prepared for surgery, she started talking about what to do if she died. Their dad did not want to hear that. Carol survived the surgery, but on the Monday afterward she was talking to Maylene.
“I’m done. I don’t want to be doing this anymore.”
“What do you mean?”
“I want to go home today.”
“You want to go home?”
“Yes. I want to go home. I’m done.”
“Do you mean you want to stop dialysis?”
“Yes. I want to stop dialysis. I’m done.”
When Maylene heard her say that, she called Karen and their dad over.
They cried. Her mother looked straight at Karen and said, “I want to go see Mark.”
Mark is Karen’s brother who died when she was 10 years old. They all knew what that meant.
About an hour later, hospital staff removed all of the tubes, turned off the monitors, and made the arrangements to transfer Carol home for her final days. The more people her mother informed of her decision, the more confidence and peace she exuded. Before, she had been tired, weak, non-interactive. But after the tubes were removed and Carol was headed home, she started chatting, telling story after story, and then fell asleep and slept really hard.
The next 10 days were hard, although Karen said they were not as hard as the 27 day hospital stay. The hospital stay was hard because they didn’t know. Coming home was hard because they knew. The mother she knew was not the woman she cared for—her mother was much weaker.
At that point the family had a team of outside caregivers to help them, and it was so much easier. Her dad refused the CNA, “No, the girls can give her a shower.” But Karen insisted on the help. She didn’t tell him, but Maylene and Karen had talked about needing that help. They knew they would have so much to deal with emotionally, mentally, physically, spiritually—every aspect, that they needed someone else to aid in caregiving. It made all the sense in the world. Once help came, her dad saw the value as well.
They started to look forward to each nurse visit. They had an argument about medications because mom was having a little bit of anxiety, and her breathing was troubled. Her dad was worried the medication was making her worse. Karen refused to give it to her because of that. His worry was his way of processing losing his wife of 51 years. Karen understood. She and Maylene both did. But Karen knew she couldn’t give medications to her mom anymore. She let the nurses do it.
One of the dearest conversations Karen had with her mom was in the sewing room. She laid down next to her mom and said, “You know I’m going to miss you.”
“Do you have any wise words of advice or counsel ?”
Her mom laughed.
“Because you do know that now that you’re dying you’re supposed to have all of this wise wisdom to give everybody.”
“Yeah, I kind of get that idea, too.”
“I guess all it really boils down to is that I love you, and I know that you love me, and you know that I love you. Nothing else really matters.”
“You’re right. So why are you crying?”
“Because I’m going to miss you.”
“I’m going to miss you, too. It won’t be long. It’ll go really fast.”
It was a really special time.
Her mom said, “Know that you’re going to be missed. I’m going to miss you, too.” Karen said, “Well, I better be.”
Then the moment was over. They sat there together. Karen looks back on that, and she leans on that conversation with her mother a lot.
One night about ten days after Carol came home, Karen woke a little after 2:00 in the morning. She went to check on her mom, and Carol was having a hard time breathing. Karen adjusted her bedding and laid down next to her. She felt an impression: “Karen, your mom is going to be okay. You can go back to bed now. She’s going to be fine.” She went back to bed, and as she drifted off, she remembers thinking, “It’s really peaceful in the house. It’s really quiet.” Then she went to sleep.
The next thing she knew, her dad came in at 6:00 the next morning. “She’s gone.”
It was Christmas day.
This interview was a gift to me, Karen. Thank you. I honor you.