010: Caring for Someone with Migraine, with Peter Rosenberger

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We caregivers tend to be very articulate, we’re very capable, we rise to the occasion, we get things done, we move at mind-numbing speeds. But in that process somewhere we get the delusion that this thing is all resting on our shoulders. And it’s too big for us. The more capable the caregiver, the longer it takes them to figure out that they’re not up to this task.

Peter Rosenberger

Caregiver

SUMMARY

If you love or live with someone with migraine, you may be a caregiver. And if you live long enough you may need a caregiver. Caregiving can be challenging, exhausting, and lonely. Peter Rosenberger understands the sacrificial gift of caregiving and provides life-giving insights and ideas to care for yourself while you care for another.

3 KEY POINTS

  • Migraine is a team sport, no one can fight it alone.
  • Caregivers suffer from three I’s. We lose our identity, our independence, and we become isolated.
  • It is vital that caregivers take care of your own heart, your own body, and your own needs. Otherwise you’re not serving your loved one very well. Because if you go down, what’s the backup plan? Who’s in line to take care of them?

Show Notes

Paula Dumas: If you have migraine, you appreciate the people who help shoulder the load when you’re having an attack. If you’re a caregiver you might need a dose of encouragement to keep giving and loving through each attack.

“If you don’t take time for stillness you’re going to have to make time for illness,” says Peter Rosenberger. And Peter understands what it means to care for someone with a chronic health condition. For three decades Peter has been the primary caregiver for his wife, Gracie. Peter Rosenberger hosts a weekly radio show for caregivers and leads Standing For Hope, the world’s first full-time evangelical prosthetic limb outreach. An accomplished pianist and black belt in the martial arts, Peter is also the author of Hope for the Caregiver and Seven Caregiver Landmines and How You Can Avoid Them. Peter, welcome to Migraine Again.

Peter Rosenberger: Thank you very much for having me. I am thrilled to be here and talk about this issue that is affecting so many. You show me somebody with a migraine and I’ll show you somebody who has a caregiver.

Paula Dumas: And with a billion people with migraine, there are a couple billion who are caregivers.

Peter Rosenberger: You know more than most that migraine affects every relationship within the patient’s sphere, significant and insignificant relationships.

Paula Dumas: Let’s start with you. Your wife, Gracie, was just 17 years old when she was involved in a horrific car accident. When you met Gracie in college and fell in love, what drew you to her? Did you have any idea that you would become a lifelong caregiver?

Peter Rosenberger: I didn’t have any frame of reference of what it was like to be in a relationship with someone that was hurt. By the time I met her she had returned to college, she already had about 20 operations that I could count. She had a pronounced limp, particularly on her right leg, but both of her legs had taken the brunt of this horrible wreck. We’re still finding things that were hurt at the time that went undiagnosed, even 34 years later.

I just saw a beautiful girl. Her beauty captured me. Her spirit is bigger than life. And then I heard her sing and I thought, “Okay, this is it. I’m taking care of this girl for the rest of her life.” But I had no concept of what that would mean. These were not injuries that, okay they mended, you get on with your life. This was not a broken leg that becomes a weather vane when the climate changes kind of thing. These are life-altering injuries and they’ve progressed to the point now that she’s up to, that I can count, 78 surgeries.

Paula Dumas: Wow.

Peter Rosenberger: Both of her legs were amputated in the ’90s, one after each child was born. When the doctor said, “Hey look, if you guys are going to have children you need to have them when you’re young.” So I went to her and said, “Babe, the doctor gave us orders. I got a prescription and everything.” And so we did but the pregnancy was tough on her and it accelerated the damage to her legs. But she bounced back after the first child and did real well, and we had our second one and got rid of the legs, but the damage was already done to her back and everything else. Double amputees also tend to hyper-extend their back and that has led to so many different problems that she deals with today.

Paula Dumas: I think of the young couple falling in love and you looking past what were visible disabilities that she was dealing with. A lot of people who have migraine have invisible disabilities that their spouse or future spouse never even anticipate.

Peter Rosenberger: There are the seen and the unseen. The unseen disabilities are challenging. Most people equate Gracie’s struggles with her prosthetic limbs and double amputation but it’s really all the unseen disabilities that she carries. She has great prosthesis and they do well for her and she’s even learned how to snow ski as a double amputee.

Paula Dumas: Wow.

Peter Rosenberger: So the problem is not prosthetics. Prosthetics have come a long way. It’s the unseen. And this is what draws me to your show because when you’re dealing with migraine issues, that’s an unseen thing. People don’t know. They look at you and they don’t know the agony that you’re in, they don’t understand it. And you don’t necessarily, as the person going through it, have the wherewithal to even communicate how difficult it is at the time. Sometimes the verbal component just gets shut down because it’s a blinding pain.

Paula Dumas: Caregivers, which is who we’re talking about today, have a lot of the responsibility for the patient when they’re in the toughest part of an attack. Many caregivers juggle meals, childcare, doctor appointments, and medical bills for the person that they care for, at the expense of their own health.

Peter Rosenberger: Don’t forget laundry.

Paula Dumas: Laundry can be a beast. What’s the condition of today’s caregivers and is there any prevalent concern about this?

Peter Rosenberger: There’s 65 million of us caregivers in the United States alone and it’s only going to get worse as we have an aging Baby Boomer population. On the news, a headline shot up that said, “Robots to replace exhausted workers.” And I’m thinking, “Show me a robot that can replace a caregiver.”

Paula Dumas: Yeah.

Peter Rosenberger: Where’s my robot? We’re tired, we’re worn out, and it’s chronic. There’s no end in sight. It’s not going to necessarily get better. It probably will get worse. How do you sustain the person who’s pushing the wheelchair, standing in the hospital room corner, picking up the prescriptions, doing the laundry, and up late at night mopping the floors? When you’re dealing with migraine issues it’s not limited to headache.

Paula Dumas: Oh yes.

Peter Rosenberger: If you have a professional carpet cleaner on retainer you’re probably a caregiver. The reality of our lives as caregivers is that we are cook, bottle washer, maid, home repair, and Uber driver. The journey for caregivers is long and wearisome. My mission, my passion, my books, my radio show, my speaking events, everything that I do is designed to strengthen that caregiver, to get them to a place of emotional and sometimes physical safety where they can catch their breath and start making healthier decisions for themselves. Because I’m not good to my wife if I’m not in a good place.

Paula Dumas: I was just reflecting as you were talking about all the different roles that the caregiver plays, like my husband holding my hair back as a human hair clip as I was throwing up.

Peter Rosenberger: Yeah.

Paula Dumas: And then having responsibility for cleaning it up. It’s a thankless job.

Peter Rosenberger: I remember when Gracie and I were dating. She had gotten sick and she called me. I was at my dorm room in college and she was at her apartment and she said, “Can you come over and help me. This is a real problem.” So I get over there and it was a real problem. I thought she’d gotten sick. No, no, no. This looked like a horror movie. I thought, “Durn girl, can’t you aim?” It was everywhere and I thought, “Oh, I had to get the Barfamatic 2000 to clean this up.” There’s a chapter in her book, Gracie Standing With Hope, I helped her write called A Match Made in Heaving… (CONTINUED)

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