This year, I will be sharing insights from other caregiving experts like Peter Rosenberger, who I met when he interviewed me on his radio show in October. Like me, Rosenberger has a spouse who has extreme caregiving needs. Here’s his story:
Peter Rosenberger began his married life as a caregiver.
When he met his wife, Gracie, she was a fiery singer who bowled him over with her beauty, talent and personality. She was also the survivor of a horrendous car accident that left her as a double amputee.
When he said “I do” 32 years ago, he not only became her husband, he also became her primary caregiver, which meant something different than he thought it would as an idealistic 22 year old. In the intervening years, he’s learned a thing or two about caregiving, sharing his expertise in two books, “Hope for the Caregiver” and “7 Caregiver Landmines,” and also hosting a Sunday radio show for caregivers on IHeart Radio.
His knowledge though was hard won.
“I fell in love with a woman, but I was dumber than a box of rocks,” the colorful Rosenberger said.
He didn’t realize how challenging caregiving would be or how traumatic it would be to watch someone he loved suffer so much. Gracie has intense, chronic pain from more than 80 surgeries. Opioids are something that are a necessity to make her pain less onerous, but they have also affected her in numerous ways that doctors never warned them about.
With a situation like his wife’s, “you can’t say you’re going to get through this; we’re going to get on with our lives,” Rosenberger said. “You have to mentally shift a little bit. You have to change the entire direction of your life.”
He describes his shifted thinking in part through describing three dangers that caregivers face—the three I’s—loss of identity, loss of independence, and isolation.
Loss of identity can be summed up in one of Rosenberger’s common life experiences, which occurs when he’s simply chatting with his friends and family.
“I can’t count how many people have asked me about my wife over the years; I can about the people asking about me,” Rosenberger said. He noted, “I’ve faced death with her so many times, facing surgery after surgery. It’s hard to plan, hard to function. I lost myself in it. I had to rediscover who I am. I had to find my own voice.”
In order to do so, he had to take some specific steps that were hard for him and are hard in general for caregivers, but vital to their health and happiness, which is also vital to the health and happiness of their loved ones.
1) Detach and Let Others Help
The biggest task is taking a step back from your loved one to care for yourself by allowing others to handle things instead. This step is essential and means stepping back from responsibility, taking time to breathe, and taking time for self-care. “Many caregivers don’t value themselves,” Rosenberger said. “I’m saying to caregivers, ‘No, you matter.’ We’re going to learn to defend our own power. We don’t have to exchange our life for somebody else like that. In the process, my wife gets a healthier husband.”
2) Regain Your Independence
A doctor and friend of Rosenberger’s had an ill wife and was becoming ill himself—gaining weight and feeling unable to step away to enjoy simple pleasures like playing golf with his pals. Rosenberger asked his friend if he had the resources to bring in someone to help. He replied, “She’s not comfortable with it.” Rosenberger responded, “I didn’t ask if she was comfortable with it. I said, ‘Do you have the resources to do this? You are one phone call away from prying your hands off the wheelchair, and playing golf. Make the call. Here’s the number.’” His friend called for help, and he later told Rosenberger, “I want you to know you saved my life.”
3) Combat the FOG—Fear, Obligation and Guilt
Caregivers can easily get lost in fear of what will happen if they aren’t there, a sense of obligation to care for a loved one in a certain way, and guilt if they take a moment for themselves. “We judge ourselves without mercy over our performance record; we are constantly beating ourselves up,” Rosenberger said, noting that some caregivers may feel guilty simply for sitting down to enjoy a bowl of soup. “If you’re so paralyzed, then you’re not going to make the right decision and you’re not going to make the healthy decision.”
4) Find Community
Rosenberger uses his radio show, which has a Christian flavor, as a way to provide at least some community for isolated caregivers, but support groups and a wide range of places from churches to martial arts studios might provide the connection that individual caregivers need.
5) Let Go of Resentment
Resentment can be a problematic roadblock, and Rosenberger suggests that accepting reality is the key to preventing it. Caregivers may feel unhappy with the state of their lives and angry because of that. However, he tells caregivers, “You’re going to have to make peace with something… Otherwise it will kill you–the stress of it and the heartache,” Rosenberger said. “It doesn’t mean it doesn’t matter…. Boundaries are good, but we don’t have to have grudges.”
Due to his writing and radio show, Rosenberger said many caregivers reach out to him for help. They may feel like they’re drowning under their responsibilities, and they simply want help to stay afloat. However, he wants them to learn to swim and enjoy themselves. “They’re not just doomed,” Rosenberger said. “Sometimes I think the goal for some caregivers is to not die. My goal for my fellow caregivers is to live.”
Next month, I will share more caregiving tips and trends from Rosenberger.
Kathi Koll is the founder of The Kathi Koll Foundation and author of Kick-Ass Kinda Girl: A Memoir of Life, Love and Caregiving. Please visit KathiKollFoundation.org or KathiKoll.com to learn more and read an excerpt.