It was a Sunday afternoon when my eldest daughter, Ella, came upstairs to tell me in a worried voice, “Grandpa says he’s going to town. I told him that it was too dangerous, but he won’t listen to me.”
I went downstairs dreading a confrontation with my dad, who was in the last stage of his battle with cancer. I was 45 years old, but when he was angry, I felt more like a child. My dad had a very strong personality. Close friends have confided in me that they never knew anyone quite like him. He was the kind of person who people came to for advice—he was good at fixing a crisis. He accomplished pretty much anything he put his mind to; for instance, when he was a young teen, he built someone an outbuilding without any prior construction knowledge. The structure fell down after a big wind came up, but he wasn’t discouraged; he taught himself how to build sturdy structures and went on to build four homes in his lifetime—my extended family lives in three of them.
Now here I was talking to him like he was a child, “Dad, you can’t go to town. You can’t even lift your leg.” The edema in his legs and feet was so severe that he couldn’t fit into his size-13 shoes, so we had rigged some giant Velcro sandals for him to wear when he went outside. “How on earth are you going to brake? What if you fall asleep?” The cancer in his bone and blood had eaten away at his body, and he had very little energy left. The moment he sat in a chair, his chin would hit his chest and I would hear him snoring.
He gave me an angry, determined look and said, “Daughter! If I can’t drive, I may as well be dead.”
He ended up not driving to town, but he did drive next door to my brother’s auto mechanic shop to get some tools. I think he realized that he couldn’t manage the three miles to town, but he didn’t want his daughter and granddaughter telling him what to do.
After his cancer diagnosis in the spring of 2013, my children and I came to Iowa to live with Dad for nine weeks and then again for seven weeks during the end of his life in the winter of 2014.
In those weeks, I experienced both the stress and the great honor of being Dad’s main caregiver. I have to be honest—more than once I was tempted to throw in the towel because taking care of him stretched me to the limits. But through God’s grace I was given the will to persevere, so I could lighten some of the burden for my four siblings and be with my father during the last, precious days of his life.
It’s a privilege that doesn’t have to be done perfectly
Taking care of Dad for this short time made me admire and empathize with those people who take care of a family member for years. Dr. Ray Guarendi’s, a clinical psychologist who is acclaimed for his radio program, “The Dr. Is In” and a national television show “Living Right With Dr. Ray,” shared his experience caring for a loved one with Catholic Digest. Dr. Ray’s 82-year-old mother-in-law, Lilian, who was suffering Alzheimer’s or some type of dementia, lived with his family for two years.
Dr. Ray knows that caring for an ailing parent can be stressful, but he recommends looking at the situation as a privilege. “I’m getting to do this—it’s hard as hell—but I’m getting to do this. The Lord says take care of the widows and the orphans and the distressed. So you need to see it as a way to fulfill God’s call to be a servant rather than looking at it with an ‘oh man, I don’t know how much longer I can do this’ attitude.”
Dr. Ray recommends not to worry about how well you’re doing the job of being a caregiver—what matters is that you are there. “I see so many caregivers stressing themselves out because they think that the person they are taking care of is not doing what is maximally healthy for them. If in fact they’re in the end stages of life, let it go! You don’t have to worry that the person isn’t eating exactly what they should eat, not walking when they should walk, or if they’re sitting in front of the TV too much. Forget that,” he says.
Siblings critiquing the caregiver’s decisions can also ratchet up the stress. “I’ll always tell the caretaker that if you want a sound bite, to quietly say: ‘Dear siblings, I like the way I’m doing it better than the way you’re not,'” says Dr. Ray.
Being a caregiver is a vocation
Author Laraine Bennett’s 90-year-old mom suffered a massive debilitating stroke that took away her speech and her bodily strength; she had to have 24-hour care. She told Catholic Digest, “It was devastating to see this once vibrant woman, a published author and illustrator—someone who was always reading three books at once—reduced to such a helpless state.”
Bennett’s days would be scheduled around her daily visits to see her mother. She experienced a portion of the cross and grace of caring of a sick parent. She told Catholic Digest, “I began to perceive the grace of caring daily for someone who is suffering; God began to open my eyes to the graces he wanted to bestow on my mom and on my whole family. This is how I began to understand that there is a special vocation and grace for caregivers.”
Experiencing the stress, anxiety, and grace that caregivers face inspired her to write her latest book, A Year of Grace: 365 Reflections for Caregivers. She felt that God wanted her to learn how to hand over her anxieties to him. “I learned many lessons while I was taking care of my mom. I began to understand what Saint Paul meant when he said, ‘We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body’ (2 Corinthians 4:10). The suffering my mom was enduring seemed almost pointless—nearly incomprehensible—until I looked at it through St. Paul’s eyes. My mom was truly manifesting the life of Christ in her physical suffering.”
One thing that Bennett’s mother’s illness taught her was the merits of slowing down and the value of life for life’s sake. “We are always rushing around, getting things done; our society values our productivity and our efficiency. The folks in bed, who cannot move or talk or do anything, are nonetheless precious to God and to the world,” she says. “God loves the suffering helpless ones… Their suffering is a mysterious prayer earning countless graces. At the end of her life, my mom taught me the importance of being (not doing).”
Advice for coping—Live in their world
One of the most heart-breaking aspects of taking care of my dad was, in the end, he had episodes where he was confused and he wasn’t living in in reality. I waffled between trying to reason with him and just going along with him.
Dr. Ray advises, “In dealing with elderly who are becoming more mentally incompetent, you do not try to establish reality with them. You go with the flow of it and ease them out of it for the moment.” He relates this charming story about his mother-in-law and how they would enter her world. Lilian had become convinced that she had a date with Clark Gable after seeing one of his movies. “She told my son, ‘You need to take me to see Clark Gable.’“ Dr. Ray’s son got into the car and started to drive his grandmother around. She was directing him where to turn and after a half-hour of driving her around, her grandson made his cell phone ring and took a fake call. He said, “Grandma, that was Clark Gable’s people. They aren’t going to be able to make it today.” Grandma was disappointed, but satisfied.
Don’t take it personally
One of the quickest way to get burned out is to take offense at comments a debilitated parent might make. “It exaggerates the stress ten-fold when you start interpreting a parent’s behavior as what it would have meant ten years ago when she was with it,” Dr. Rays explains. He advises not wrestling with determining how much the elderly parent understands. “‘If she’s accusing me of stealing, she knows what she’s saying.’ Wait a minute, if she is functioning at thirty 30 less capability, then that’s going to affect what she says. You can be partly debilitated and not be responsible,” he points out.
Know Your Limits
There is nothing morally wrong with admitting that you have done all you can. “People think that somehow they are inept, inadequate, or unloving if they finally say, ‘I can’t sustain it,’” says Dr. Ray. After two years, he and his family decided that they couldn’t take care of grandma anymore because she was becoming too difficult to supervise and therefore was endangering herself. “Could we have lasted another four months, probably, but who knows what would’ve happened. You have to be aware your limits, and you have to thank God for the chance you had to take care of your mom or your dad when you did.”
We feel blessed that we were able to take care of my dad until the very end. His dying wish was that he would die at home like our mother with the family around him praying, and praise God, he did.
Resources: Attending Mass eases suffering
The caregiver suffers greatly because he witnesses the pain and suffering of his loved-one daily. Taking care of a dying spouse poses many of the same crosses as taking care of a debilitated or dying parent.
In his book It is Well by—Life in the Storm, Chris Faddis delves deeply into the sufferings that a husband feels while caring for a dying wife. His young wife, Angela, battled colon cancer for 17 months. He told Catholic Digest, “There is such a struggle as a caregiver between wanting to help the person get better and or simply alleviating their pain, suffering, and heartache.”
Besides praying the Chaplet of Divine Mercy, the Mass is what truly helped ease his suffering. “Each time I went to Mass, I felt this sense that I was being drawn out of myself—out of my worries, fears, and pains,” Faddis says.