Long-term caregiving occurs when your loved one has experienced a health crisis that has resulted in permanent disability or progressive illness. Here Peter shares his story of a “new normal” that is full of ongoing changes and challenges.
Peter Rosenberger has been a long-term caregiver for more than 30 years. He met his wife Gracie several years after her devastating car accident in 1983. By that time, he says, she had already endured 21 operations and had a significant limp, but, he adds, “she also had a powerful will to live, succeed, and …oh yeah, she was drop-dead gorgeous—just saying!”
Since then, her surgery count has soared to more than 80, including the amputation of both legs. In addition, the couple has also had to cope with more than $10 million in medical bills. Through it all, Peter and Gracie have drawn hope from their deep faith, which strengthens their hearts, and their sense of humor.
In this post, Peter offers some advice based on his own experience to those who are facing the “new normal” of long-term caregiving.
WHN: How can caregivers come to terms with the challenges of long-term caregiving?
Peter: The goal changes from feeling better to being better. In a long-term caregiving situation, we’re not going to feel better about the issues faced by ourselves and our loved ones. Yet we can improve as human beings and in how we respond to those challenges. We can live a calmer, healthier and even more joyful life. Acceptance is a hard and elusive thing for caregivers. The biggest adjustment for me was accepting that we’re no longer trying to “get through this and get on with our lives.” As the surgeries and years of difficulties mounted, the realization changed to “This is our life.”
WHN: What did you find the most challenging in those early months?
Peter: The initial months were filled with a great deal of optimism. We were young, in love, and starting a life together. I threw myself into figuring out more about her condition, but her issues became a distraction for me dealing with mine. I neglected my own spiritual, emotional, physical, professional and fiscal health. I focused on helping her, but failed to realized that if I was healthier on every level, I could help her better.
WHN: Where did you turn from help?
Peter: Over the years, I learned to reach out to specific professionals. I needed counseling, so I saw a counselor (actually several). I need spiritual help, so I engage in a strong church. I need to be physically healthy, so I regularly see my physician, watch what I eat, and study martial arts. I need community, so I engage in support groups. I need financial advice, so I seek out financial planners and CPAs. I need to laugh …so I watch a lot of comedy.
WHN: What have you learned in your three decades as a caregiver?
Peter: I’ve learned that healthy caregivers make good caregivers. I’ve learned you can’t push a wheelchair with clenched fists. I’ve learned not to live in the “wreckage of my future,” but instead live in the moment and fight what’s closest. I’ve learned to keep a sense of humor.
WHN: You coined the phrase “The Delta Doctrine.” Can you explain what it is?
Peter: It was kind of a joke that occurred to me when flying out of Atlanta on Delta and noticing how all the flight attendants instructed us to do the counter-intuitive when losing air pressure: “Put our masks on first.” They tell us that because they (and everyone associated with the airline industry knows) that we instinctively hurl ourselves (often recklessly) at a vulnerable loved one before seeing to our safety. However, I can’t help someone if I’m passed out.
I tried to figure out, however, what it looked like for a caregiver to “Put our mask on first.” That’s when I came up with the “3 W’s”:
Wait—Avoid talking or forcing issues in high-stress situations.
Water—Hydrate: drink to think. Doing so allows us a moment to collect our thoughts and fill our mouths with something besides words that we will most likely regret.
Walk—When the stress level amps up too high, get out and walk around the block. Cooling off allows us to better navigate the conflicts and challenges.
Those three things are the first steps towards us staying calm in high-pressure situations. I can hold my breath for a while, but I can’t do it for 33 years. I need to calm down and equip myself to make better decisions in high-stress moments.
WHN: What are some indications that someone is at risk of “caregiver burnout”?
Peter: Caregiving burdens and caregiver burnout are always a risk. It is not a problem to be solved, but a challenge to be faced daily. I don’t know any caregivers who reach a “plateau” and can put it on auto-pilot. The only way we can live healthy lives as caregivers is to intentionally live healthy lives—regardless of what’s going on with our loved ones. We may not feel happy about much of what we deal with, but we don’t have to be miserable. We also don’t have to be overweight, nor do we have to medicate our pain with alcohol, drugs, sex, or other issues.
As caregivers, we are not doomed to being co-dependent or enablers. Yet we cannot avoid or free ourselves of those and other issues just by squinting our eyes really hard and “white-knuckling” ourselves through it. We require specific help from those with significant experience.
WHN: What can caregivers do to help alleviate the burden on themselves?
Peter: I don’t know that you can alleviate the burden, but you can enlist a few extra shoulders at the wheel. The first person to discuss this with is the caregiver’s primary care physician. Counseling is recommended and support groups are encouraged. Yet none of those will happen until the caregivers steer clear of landmine #7 that I detail in my book: 7 Caregiver Landmines and How You Can Avoid Them: the belief that “It’s all up to me.”
It’s not all up to me, nor is it up to any of my fellow caregivers. I am powerless, for example, to take away my wife’s extreme chronic pain. I didn’t cause her injuries nor can I fix them. I can care for her to the best of my abilities and serve as a steward, but I don’t own the problem. I can ask for help. I can accept when help doesn’t arrive and I can also be at peace with myself knowing that I did my best.
Once we settle that in our hearts, it better equips us to seek outside resources. From paid caregivers to recruiting volunteers from church or friends, we’re in a much better place to seek, request, enlist, and manage whatever help is within reach when our head and hearts are not a train wreck. Understanding our limits is one of the most important things caregivers can grasp.
For More Information
Peter Rosenberger hosts a weekly radio show, Hope for the Caregiver, heard on more than 185 stations, and has authored three books: Gracie–Standing with Hope, Hope for the Caregiver and his newest book, 7 Caregiver Landmines and How You Can Avoid Them. For more about Peter and Gracie, visit their website.
Photo Credit: Gracie and Peter Rosenberger