5 WheelChair Protocols For Caregivers

April 17, 2014 by  
Filed under Caregiving

With 65 million Americans serving as a caregiver, wheelchairs will inevitably play a part in the relationship. Just because we caregivers can walk and push something at the same time, doesn’t mean that we aren’t creating a set of problems for the ones we love. Here are a few things gleaned from pushing my wife in a wheelchair for three decades.

Avoid speaking for your loved one in public.

It is demeaning to my wife when people address me instead of her —and she’s the one with the appointment. Often times restaurant servers, employees, or representatives ignore my wife and look to me to make all the decisions. My challenge is to direct them back to my wife instead of choosing expediency by failing to confront the issue (with kindness, of course). It doesn’t require a chip on the shoulder, and a simple phrase or word spoken firmly, but gently, can provide a wealth of instruction for those individuals who may be well-meaning but untrained.

I am simply there to support —not control. Even If I can check her in faster at a doctor’s office, for example, I need to insure that she is comfortable with that, not assume that I’m in charge. If my wife needs me to speak for her at an event or appointment, we try to make that agreement prior.

Mind your Surroundings

In crowded restaurants and other places, handles or the anti-tip bars sticking out of the back of many wheelchairs can trip or snag people who may be bustling about. Help your loved one avoid a potentially embarrassing situation by making sure their chair is not a hazard for others.

Regular Maintenance.

The wheelchair is often the only way your loved one is mobile. Check the tires, handles, seat cushion, and other parts of the chair. Just as it is common sense to not drive around with the “check engine” light on in your car, an improperly maintained wheelchair is problem waiting to happen.

Allow Others to Feel Embarrassment for Poor Architecture

It’s not your loved ones fault if the person behind the counter can only see the top of their head. Nor is it their fault if they can’t get into the church, office building, or restaurant. Allow those individuals to feel uncomfortable with their own architecture and layout. Never doubt the power of inactivity when it comes to making a point. A few moments of awkward silence speaks volumes. By avoiding forcing our loved ones to accommodate poor planning by others, they maintain more dignity when facing an undignified situation. If we caregivers can shy away from being enablers and co-dependent by working to make everyone comfortable, those who do not have “skin in this game” might gain some perspective and awareness. If all else fails, you can always leave a private comment to the owner or person in charge stating, “We’d love to do business with you, please contact us when you’ve made suitable accessible arrangements.” Although more than twenty years old, the Americans’ With Disability Act has not eliminated every accessibility problem. We don’t have to have an entitlement mentality about it, but we also don’t have to accommodate their poor planning with our money.

Practice Safe Driving

Small rocks, rough terrain, an uneven floor, and many other hazards can cause fear and potentially harm to our loved ones in wheelchairs. I look back with great embarrassment at averting my eyes while pushing and then hitting a tiny (even only an inch-high) lip on the sidewalk or entrance way to a building and nearly dumping my wife on the ground. Our loved ones depend upon us for their safety.

A good ideas is to experiment by asking a teenager to push you around a mall in a wheelchair for two hours in order to get a better perspective. It is particularly unsettling to rush around at “butt-high” in crowds, and it can be nerve wracking to be right up on top of other people’s feet. Allow for plenty of space to navigate, and don’t be in a hurry.

Follow the rules of the road: Don’t text and drive, don’t tailgate, and don’t “drink and push!”

As the baby boomers age, we will all find ourselves pushing a wheelchair at some point. If you love someone, you’ll be a caregiver. If you live long enough—you’ll need one. So, as you push someone in a wheelchair today, remember, “What goes around—comes around!”

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Support Standing With Hope

Gracie_EmmanuelStanding With Hope is the vision of Gracie Rosenberger.  Following the amputation of both legs in the 1990′s as a result of serious injuries sustained in a 1983 car accident, Gracie purposed to provide quality prosthetic limbs to her fellow amputees.  She made this commitment only hours after walking for the first time as a double amputee



Watch and hear the amazing journey!

Drawing upon Peter’s vast and unprecedented experience as a caregiver for Gracie, Standing With Hope has launched a new outreach to those caring for vulnerable loved ones.  Through his radio show, books, and public speaking, Peter offers the hand of experience to strengthen and help those buckling under the strain of caregiving.

See the hilarious video Peter recently did with Jeff Foxworthy:

Peter Radio Show For Caregivers

The Case For Support

Gracie_EmmanuelStanding With Hope is the vision of Gracie Rosenberger.  Following the amputation of both legs in the 1990′s because of serious injuries sustained in a 1983 car accident, Gracie purposed to provide quality prosthetic limbs to her fellow amputees.  She made this commitment only hours after walking for the first time as a double amputee


Growth and Change

With small beginnings that began with an invitation by Ghana’s government to Gracie and Peter Rosenberger, and Gracie’s personal prosthetist, the work began in 2005  in Accra, Ghana (West Africa).  It has grown to include five additional certified prosthetists, two prosthetic students, physical therapy students, and a dozen volunteer team members.

What’s a Leg Worth?   (CLICK HERE)

Collecting used prosthetic limbs from around the country, Standing With Hope launched the world’s only limb recycling program using inmates in a partnership with Corrections Corporation of America.

Mission and Goals

Ministry and Mobility remain the key mission of Standing With Hope.  Treating amputees, training local technicians to maintain a fabrication and support infrastructure are the key components of Standing With Hope’s prosthetic limb outreach.  All of this is done for the opportunity for Standing With Hope personnel to share the message of God’s salvation through the work of Jesus Christ.

Major milestones include:

  • 2012-08-11 15.10.18Standing With Hope team members shifting from the labor force on the field in Africa, to the advisers and mentors for local technicians to treat their own people.
  • Memorandum of Understanding with Standing With Hope and Ghana’s government to formalize the partnership and officially permit Standing With Hope to share its Christian message with all patients treated in the program.

Successes

Year after year, Standing With Hope continues to send teams and ongoing supplies.  With more than 500 limbs made for amputees in Ghana, Nigeria, and Togo, Standing With Hope has not only given the gift of walking, but has established Ghana Health Services’ National Prosthetic Centre as a quality fabrication institute.

Major milestones include:

    • Peter with Simon.  Ghana 2012

      Peter with Simon. Accra Ghana

      Technicians transitioning from making wooden, ill-fitting limbs—to making high quality, high function prosthetic commensurate with US built limbs.

    • Reduced the time needed for making limbs from 3 weeks to less than 48 hours.
    • Web based tracking system for patients
    • Web based interface for prosthetic limb recycling program utilized at the correctional facility.
    • High speed internet video service established in the clinic for real time training and patient evaluation.
    • With an infusion of training, equipment, and ongoing supplies, Standing With Hope is responsible for not only helping patients walk and become productive citizens, students, etc., but also increased employment at the limb center itself through the hiring of additional workers by Ghana Health Services.
    • Technicians from other countries have traveled to Ghana to train with our team members.
    • Numerous national press conferences to all of Ghana/neighboring countries spotlighting the work, and allowing the message of our Christian faith to reach vast audiences.

Please consider a donation today to equip others to continue …Standing With Hope!


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Abide With Me

Grayson RosenbergerGrayson Rosenberger ( Standing With Hope Board Member) asked his father, Peter, to record a hymn every month.
“Dad, before you ran a prosthetic limb ministry …or were even a caregiver for Mom, you were a pianist.  I think people would enjoy hearing you play.”
This is Peter Rosenberger playing his arrangement of Abide With Me .  Set to a slide show of Peter at the piano, including shots with Gracie and their two sons.

The Yardstick

April 7, 2014 by  
Filed under Blog, Caregiving

Caregivers often hold ourselves to a faulty measuring standards.  Compiling a lifetime of experience into a life-line for caregivers, Peter Rosenberger shares a poignant story of how a more accurate measurement can help strengthen today’s caregivers.

From: The Peter Rosenberger Show

Friendly Fire

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Friendly Fire:  Excerpt From Gracie-Standing With Hope 2010 Liberty University Press

Editor’s note: In 1983, Gracie Parker Rosenberger fell asleep at the wheel and experienced a horrific car accident that has led to 78 operations—including the amputation of both legs.

In the physical therapy room at Walter Reed, my husband, Peter, and I met a young corporal who not only had lost a leg, but also had freckled bits of shrapnel still peppering the shin area of her remaining leg. The tiny fragments work themselves out over time, but can look awfully disconcerting.

Peter, harkening back to our first meeting as students on the campus of Belmont University when he candidly addressed my scarred and wounded body, didn’t skirt the issue but directly asked about her injuries. Noticing the tiny pieces of metal just below the skin of her leg, he asked her with complete deadpan, “You haven’t been hunting with Vice President Cheney, have you?”

The face of the young corporal lit up with laughter, and she quickly looked around the room—almost as if she was making sure it was permissible to laugh at the reference to the former vice president’s famous hunting mishap. Breaking the tension of her pain and despondency, she opened up. After talking for a few moments, her voice lowered as she quietly asked, “Will I ever get a boyfriend?”

Thumbing toward Peter, I quickly let her know, “Hey, I found this guy!”

Interrupting me, Peter (with a feigned look of worry) admonished, “Gracie, we’re trying to cheer the girl up. Hasn’t she suffered enough?”

At that point, we all started laughing. But through the laughter, we still addressed the heart issues: What will happen to me? Will I be loved? Will I be accepted?

On our next visit to Walter Reed, we reconnected with the young soldier, and she not only was walking superbly, but also looked like a different person. Her confidence, smile and general overall sense of “I’m going to get through this” seemed to flow out of her. After lots of hugs, we all knew the road ahead—although full of challenges—was bright and exciting.

But that’s not always the story for wounded warriors. So many truths are hammered home during my visits to Walter Reed. In many respects, Peter and I regard the Army hospital as one giant metaphor for the church. Highly skilled warriors struggling with devastating wounds are found not only on Ward 57 at Walter Reed, but in church pews and pastors’ offices across the country.

Some marriage issues can feel like amputations; I believe I am uniquely qualified to make that statement. Relationship discord can result in lifetime heartaches and produce many casualties. Observing wounded soldiers often provides a picture of what confronts many of today’s pastors.

One such encounter stood out during our most recent visit to Walter Reed. While visiting freshly wounded soldiers performing physical therapy in the Military Advanced Training Center (MATC) on campus at Walter Reed (I sang for the groundbreaking of that facility), we met a bitter young man whose wounds resulted from friendly fire. Although an accident, he was struck down by his own team.

In his mind, as he looks down at his amputated leg, he doesn’t even get the bragging rights to say he lost it for his country. Rather, he thinks he lost it because of his country. Of course that’s not true—he’s a hero for even enlisting; but those are hard feelings to fight.

Walking over to greet him, he rudely snapped at me. Lying on his back while working out on a physical therapy table, he could only see me from the waist up. The physical therapist working with him looked embarrassed, and quickly tried to cover for me by telling the young man I was welcome there and that I had a lot of practical advice worth hearing.

Disbelieving the therapist, he snarled back with a hateful comment. Momentarily stunned, I regained my composure, and while holding on to a railing, propped my prosthetic leg near where his head rested on the low workout table.

He not only noticed my artificial foot beside him (encased in a beautiful shoe, I might add), but his eyes turned to watch me balancing on my other artificial leg as well.

“You’re not the only amputee in here, big guy.” I said, while looking him squarely in the eye.

The soldier in him quietly nodded at me, and he grew silent.

Ten feet away, Peter listened to a man who, although he had lost both legs, cracked jokes with a contagious sense of humor. Cutting up with him (as Peter often does), the soldier’s face quickly clouded over, however, when Peter pointedly asked him how things were back home.

Looking down at his new prosthetic legs, he whispered out, “My marriage is on the rocks, and it doesn’t look good.” The loss of his legs didn’t keep him from joking, but the wounds of his heart silenced the laughter.

Friendly fire.

Peter asked a mother if her son’s father had been up to the hospital. Looking over at her son’s newly amputated left leg, as well as the halo device holding the pins piercing his right leg, her jaw tightened as she flatly said, “He left years ago, and good riddance.”

Friendly fire.

How many of us deal with deep wounds caused by those closest to us? How many of us have caused damage to the ones we love and swore to protect? Sometimes “friendly fire” wounds are compounded with the shame of the wound itself. We feel like our wounds come with dishonor, and our fists clench with a rage that wants to choke the one(s) who hurt us.

Other times, we realize with horror how poorly we treated those counting on us, and the guilt and shame fill us with despair. We can all recall those things that cause tears to pour from our eyes—the things driving us to lash out at the ones who hit us with “friendly fire.” In our pain, we might even strike at people who are simply trying to encourage us.

I propped an artificial limb on a physical therapy table to help a hurting young man gain perspective and, hopefully, see he can move past the horrific injury that altered his life. Christ is the wounded warrior who presents His own wounds, not only to communicate perspective, but also to demonstrate His love for each of us. He didn’t just prop a metal leg on the table; He laid down His life and was Himself wounded—for our sins. His wounds made it possible for ours to be healed. He never clenched His fists, but rather stretched out His hands and received the nails.

Knowing that has given me the courage to face my own “friendly fire” events, including the self-inflicted one so many years ago when I got behind the wheel of the car while too tired to drive. Even today, looking at the wounds and scars from my car accident is still difficult … after nearly three decades.

But when I look at His wounds, I am strengthened to know that He redeemed my soul and is redeeming my wounds. He even uses my broken body and wounded heart to play a small part in the redemption of others’ hurts; maybe even yours.

For a lifetime, I’ve trusted God with my trauma and disability. Beyond my wildest dreams, He’s reached into what most thought was a senseless tragedy and used it to comfort wounded warriors, broken hearts and many others struggling with “friendly fire.”

“But it was our sins that did that to Him, that ripped and tore and crushed Him–our sins! He took the punishment, and that made us whole. Through His bruises we get healed” (Isaiah 53:5, MSG).

Gracie Rosenberger and her husband, Peter, started Standing With Hope, a nonprofit prosthetic limb outreach that continues to help amputees in developing countries. Although saddled with $9 million in health care costs and ongoing severe chronic pain, Gracie has defied the odds and emerged as a powerful voice of courage and inspiration to individuals around the world.

Who Is Securing the Weapons?

March 18, 2014 by  
Filed under Caregiving

Peter_Caregiver_3Recently on my radio show for caregivers, we discussed that more than 100,000 Tennesseans suffer from Alzheimer’s disease.  Pondering on that vast population, and then reflecting on all the other debilitating illnesses and impairing conditions faced by so many, the question to occurred to me, “What about the guns?”

Many of these suffering individuals are gun owners, and the stories keep coming of caregivers (volunteer and professional) who arrive at the home to find an impaired loved one wielding a weapon or leaving one lying about the home.

Rather than have those caregivers try to put that firearm away while holding it like a dead mouse, I thought “Why not teach them how to properly unload and secure that weapon?”

We can teach people to drive a 6,000-pound car—unloading and securing a weapon is far less complicated and dangerous than getting behind the wheel of car.

In addition, caregivers are at a particular disadvantage when faced with assault or home invasion.  As the husband of a woman missing both legs, we cannot simply run away from danger.  I must stand my ground—or allow my wife and myself to become victims.  Police simply cannot make it to our home fast enough before damage is done by an assailant.

From the FBI’s website: 

Information collected regarding types of weapons used in violent crime showed that firearms were used in 69.3 percent of the nation’s murders, 41.0 percent of robberies, and 21.8 percent of aggravated assaults.
*Source: http://www.fbi.gov/about-us/cjis/ucr/crime-in-the-u.s/2012/crime-in-the-u.s.-2012/violent-crime/violent-crime

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When an assailant arrives on the property of a debilitated citizen, public opinion becomes irrelevant, and safety becomes imperative. Confidently handling a weapon to defend a loved one who cannot defend themselves— transcends politics.

That is why I am working with organizations to develop gun safety and handling training courses for caregivers.

As my wife’s sole caregiver for nearly thirty years, I know that we caregivers are the last and often only line of defense for some of the most vulnerable members of society.  I don’t feel the need to defend the second amendment, but I do need to be able to defend my wife and myself.

Whether we are protecting those loved ones from criminals, or from themselves as they are ravaged by disease and impairment that affects their judgment—we have the responsibility and opportunity to prevent immeasurable loss and heartache with a minor investment of time and training. Together we can increase safety and security for our loved ones …and those who care for them.

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Support Standing With Hope

Gracie_EmmanuelStanding With Hope is the vision of Gracie Rosenberger.  Following the amputation of both legs in the 1990′s as a result of serious injuries sustained in a 1983 car accident, Gracie purposed to provide quality prosthetic limbs to her fellow amputees.  She made this commitment only hours after walking for the first time as a double amputee



Watch and hear the amazing journey!

Drawing upon Peter’s vast and unprecedented experience as a caregiver for Gracie, Standing With Hope has launched a new outreach to those caring for vulnerable loved ones.  Through his radio show, books, and public speaking, Peter offers the hand of experience to strengthen and help those buckling under the strain of caregiving.

See the hilarious video Peter recently did with Jeff Foxworthy:

Peter Radio Show For Caregivers

Bubble Wrap?! Really?!

Bubble Wrap? You’ve got to be kidding!  Hard to believe it’s been 7 years since Grayson Rosenberger won a national contest by inventing a new use for the packing material: creating a “skin” covering for below-knee prosthetic legs. We still cover legs with recycled Bubble Wrap and cosmetic hose.

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Grayson (22), who serves on our board of directors is in college and heading into the film/entertainment business. Check out this video of him doing this when in middle school.

Online donation system by ClickandPledge

What’s A Leg Worth?

P_V_2008All of the prosthetic limbs provided by Standing With Hope are custom fit for each patient.  Some materials are donated through our limb recycling program, but others have to be purchased.  Broken down so it’s easy to see what goes into a leg, here’s a short list of ways you can get involved from something as simple as sponsoring dark brown pigment to color the socket to match the skin tone of the person …to sponsoring a drum of resin that can make 350 limbs.  Look at some of the items below …and then simply click on the RED  DONATE NOW BUTTON  to be directed to a special site for sponsoring supplies.

DonateNow

  1. $ 25              1 Bottle of Dark Pigment (colors approx 30 sockets)
  2. $ 35              Sanding Cones
  3. $ 50             2 Boxes PVA Lamination Bags (20 each box… for 40 legs)
  4. $ 100           Nylon Stockinet (100 yds-for approx 50 legs )
  5. $ 150           4 Lamination Adapters (one per limb)
  6. $ 200           Liner/Sleeve (for one below knee patient)
  7. $ 350           1 finished limb (Below knee)
  8. $450            1 finished limb ( Above knee)
  9. $ 550           1 Below Knee Limb & liner/sleeve
  10. $ 600            I-Pad for Clinic Techs & Video Conferencing
  11. $ 3500        Sponsor complete trip of prosthetist (during off season)
  12. $ 4500        Sponsor prosthetist (peak season during May-Aug)
  13. $ 7500         55 Gallon Drum of Resin shipped (350 legs)

Immediate need for  APRIL  ($9,800)

  • 55 Gallon Drum of Resin Shipped  $7,300
  • Ipad for clinic staff  ($600) PLEDGED!
  • Sponsor 5 Below knee limbs  ($1,750) PLEDGED!
  • Sponsor 5 Above knee limbs  ($2,500)
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Volunteer prosthetists fitting a patient in Ghana with a hip-disarticulation

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Peter with an inmate working in the limb recycling program

 

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4 Prong Laminating Adaptor            (Item 4)

 

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Recycle Prosthetic Limbs

We’ve heard from many families over the years who called to say that a loved one who wore a prosthesis passed away …and they didn’t know what to do with the limb. Often with great emotion, they ask if we would take the device. One woman recently sent of box of limbs that belonged to her husband …who passed away in 1994!

We need your help in sharing this post with as many as possible so that we can connect to those who have used limbs just gathering dust in a closet. We are so honored that spouses, children, and other family members will trust us with a used prosthesis…and we absolutely will take those limbs, recycle all the useable parts, and ship them overseas to help serve another person. Gracie herself has rummaged through the closet to find prosthetic feet or other materials she no longer uses …and we recycle virtually every part! Prosthetic socks, liners, sleeves, and belt systems …we will take it all. If a shoe is on the artificial foot, please don’t forget to include the other shoe!

So DON’T let a used artificial limb go to waste …and just collect dust. We can recycle the limbs not being used …particularly the feet. Now, with our partnership with Corrections Corporation of America, inmates volunteer to disassemble those donated limbs to help recycle all the useable parts. (Watch the short video below and See the Press Release)

Click Here to Learn More About Other Ways to Get Involved!

Mail The Used Limbs to:

Metro Davidson County Detention Facility
Standing With Hope Program
Attn: Mr. Wilson
5115 Harding Place
Nashville, TN 37211

If you would like a receipt of this donation in kind, please include the name of the individual donating the limb with the device (confidentially maintained).  Also, if there is a shoe on the prosthetic leg, please include the other shoe!

“You Might Be A Caregiver If ….”

Peter and Jeff 2

I recently invited Jeff Foxworthy to help me do a riff for caregivers and we filmed a spot for AARP:  ”You might be a caregiver if …”  It still makes me laugh to watch it …and I wrote most of the jokes.  

Correction:  As a caregiver for three decades, I LIVED most of them!

“How can you laugh when you’ve served as a caregiver for nearly thirty years through all the brutal challenges that your family continues to endure?”

This was how a conversation started recently when talking to a woman caring for her aging parents. Continuing on, she stated, “I love to laugh and carry on, but when the topic comes to my family and the heartbreak I am facing right now with my dying folks— I just can’t go there.”

Laughter is a muscle I work—and practice every day. For years, I used humor as a defense mechanism to push back against the heartache and fear as I helped my wife through her now 78 operations. With the help of others, however, I’ve learned to laugh and have joy from a healthier place in my heart. Although my wife lives with extreme circumstances, I’ve discovered it is inappropriate to wait for her to get better or worse before I live a healthy life—emotionally, physically, financially, and professionally. Unhealthy caregivers make lousy caregivers.

As the conversation continued, the woman broke down into sobs while relating the intense pressures of being an only child with elderly and chronically ill parents. I listened as she struggled to make sense of her new life as a caregiver. After a few minutes the conversation lightened somewhat, and I evidently quipped something funny, and she burst out laughing. “See,” I exclaimed to her, “You still have tears on your cheeks, but you are laughing as well —and it’s okay!”

We all know we’re permitted to cry, but we can laugh as well—and we can do it from a healthy place in our hearts.

Clowning around one day while speaking about the subject of caregivers, I did my best Jeff Foxworthy imitation and delivered a one-liner of, “If you have a professional carpet cleaner on retainer—you might be a caregiver.”

Support Standing With Hope.  We’re not asking for an arm and a leg …just a leg.

For less than $30 a month, you can provide a leg per year to an amputee.

DonateNow


Friends agreed it was funny and said, “You and Jeff ought to do some of those—it would really connect with folks.”

Jeff and his wife have been dear friends to my family for many years. During particularly rough patches, I can recall numerous long phone calls, some tears, and a lot a love and laughter that they have offered— in order to help me as I sought to provide leadership to my family through what most call a medical nightmare. When I launched my radio show for caregivers on Nashville’s WLAC, it was Jeff who told me, “Make ‘em laugh, Peter. “ He added, “You know more than most how hard this is, and they need someone they can trust to give them permission to lay down their burdens for just a bit—and lighten their hearts.”

With AARP’s help, Jeff and I got together to offer a little humor, love, and support to let my fellow caregivers know that they are not alone —and that help is available. Drawing upon AARP’s desire to offer practical help, encouragement, and community, we saw this as a real opportunity to reach out to hurting hearts during November’s National Caregiver Awareness Month. We caregivers can easily get bogged down in what I call the “Three I’s.” We lose our independence, our identity (how many of us rattle off our loved one’s medical chart when asked how we are doing?) and we become isolated. Because we’re often cut off from our normal social circle and enmeshed in the lives of the ones we’re caring for, it’s hard to step back and get a healthier view—and laugh at the absurdities we deal with every day.

Check out the hilarious outtakes by clicking here!

Taking on that isolation factor, we wanted to let others know that although it is a lonely walk, they are not alone. Check out the practical resources and community waiting for caregivers at http://www.aarp.org/caregiving

Jeff and I wanted to help others laugh, even while tears streamed down their cheeks. With a couple of jokes, the extended hand of experience, and the community of AARP, we seek to strengthen caregivers one weary heart at time.

Expert, Schmexpert. Who Cares?

Recently I spoke at a conference where I was introduced as an “expert in caregiving.”

I get that a lot—mostly because people don’t what to call me, so referring to a vernacular that connects, I am attributed expert status.

Thinking on that title, I remain conflicted. Certainly when it comes to caregiving for my wife, I am hands down the best there is—I win by default because no one else has logged the hours. In addition to years of on the job training, I’ve also picked up quite a few caregiving skills. I can give injections, change complex dressings, handle IV antibiotics at home, never lost an appeal with an insurance company, memorize vast amounts of data regarding my wife’s chart, discuss said chart intelligently, catch mistakes made by health care providers, and I’ve assisted a surgeon on a procedure.
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Really! I mean, with my last name, it was only a matter of time before someone called me “Dr. Rosenberger.” I don’t correct them when they do, I simply tell them I am a “cranial proctologist” and I specialize in helping extract people’s heads from their …well, you know.

Does all that make me an expert in caregiving when it comes to the needs of others’ loved ones? I don’t know, and who really cares, anyway?

What I do bring to the table, however, is a profound awareness of the heartache, frustration, rage, compassion, pity, love, anger, terror, impotence, weariness, despair, fear, and powerlessness …that people feel when caring for a chronically ill loved one.

On those issues, my credibility is unimpeachable and my experience is beyond the understanding of most individuals. You simply cannot grasp it until you’ve lived it. That’s why when I see others who traveled down similar roads, we don’t even have to speak—when see it in each other’s eyes.



Support Standing With Hope.  We're not asking for an arm and a leg ...just a leg.
For less than $30 a month, you can provide a leg per year to an amputee.

DonateNow


It’s to those deep emotions and hurts that I offer what I have. “How do you function and live a healthy life while wrestling daily (often hourly) with those intense feelings in the midst of a chronic medical crisis?”

Carwreck_FrontView_sSince her wreck on November 18, 1983, my wife has been considered “uninsurable.” Under my watch, this uninsurable individual has changed insurance policies six times without even a one-minute gap in coverage. I’ve won hard fought appeals, corrected physicians and pharmacists, and generally become adept at navigating America’s health care system.

As important as the topic of health care and insurance is (ask me later what I think of the ACA and the rank amateurs inflicting it on the American people), I have discovered that most caregivers don’t struggle with insurance, but rather assurance. I can train someone with limited skills to navigate the health care system—heck, I trained myself! Once learned, it’s not something you have to relearn. Dealing with the complex matters of the human heart when dealing with a long-term crisis of suffering and illness, however, well—that’s a much more difficult road to travel.

People are scared. Actually, if they are honest, they’re downright terrified. It’s into that “pit of despair” (if I may borrow that term from a great movie, The Princess Bride), that I extend the hand of experience to offer comfort, practical advice, and companionship to those who feel truly lost and overwhelmed.

Peter_Radio_HSWhy do I do this? Because I can—and more importantly, because others have done it for me. There is no way that I can continue withstanding the pressures on me were it not for others who have bravely fought these battles and shared their journey with me. That’s what we caregivers do—we help others. Besides, I’ve been doing this so long that I’ve had ample time to make every kind of mistake possible! I think I can save others a few steps …and a lot of heartache.

We think we are helping our loved one by doing all these different tasks on their behalf. Failing to keep ourselves healthy, however, puts that loved one in greater jeopardy. All the good things we’re doing on their behalf will be all for naught if they are left alone and unable to do for themselves—simply because we didn’t take proper steps to stay health emotionally, physically, financially, and spiritually.  It’s time to “pry our hands OFF the wheelchair …” and ask for AND ACCEPT help from others.

Once we start functioning as healthy individuals, we become much more capable of helping others.

It’s the Delta Doctrine, “Put that mask on yourself first before helping others.” It’s difficult to care for someone when you are gasping for air yourself.

So, Expert…Schmexpert.  Who really cares?

The important thing is that you know that, although this is a lonely road …you’re not alone.   By extending community to you in the isolation you feel as a caregiver, we are strengthening ourselves to better care for our loved ones, while building a healthy life for ourselves.

 

Peter W. Rosenberger draws upon his vast experience in caring for his wife for 27+ years through her now 78 operations, multiple amputations, 60+ Doctors, 12 Hospitals, and $9 million in medical costs. In addition to authoring two books and numerous articles, he hosts a weekly radio show for caregivers. Peter and Jeff Foxworthy recently teamed up to do a hilarious video for AARP “You Might Be A Caregiver If …” Peter’s newest book is WEAR COMFORTABLE SHOES – Surviving and Thriving As A Caregiver.

Romance and Disability

In Sickness and Health: Romance and Disability

Peter Rosenberger

Raising a family and keeping love alive in a marriage with a spouse who is constantly sick or in severe pain is an extreme challenge; one with many casualties. The divorce rate in couples with a disability in the family hovers around 90% and relationships with a disability or chronic medical condition face significant pressures on the love holding the marriage together. In my many years of caregiving I’ve observed and am learning four particular concepts that help allow love to transcend the harsh realities of living with someone who is sick and hurting —realities that can easily destroy a love.

1. Separate the person from the pain

How do you keep love and passion thriving in a chronic medical catastrophe where the suffering is not limited to a short-term illness or injury?
Peter_Gracie_2013Different from Alzheimer’s or dementia, marriages impacted by one spouse living with a broken or diseased body while retaining complete cognitive awareness encounter a different set of emotional trials for the marriage. The challenge for the healthy spouse is to maneuver through the minefield of medical issues, attending to each of them, but never losing sight of the suffering person’s heart.  Taking care of the body does not always equate to caring for the heart.

The challenge for the sick or injured spouse, even from a wheelchair or while in severe chronic pain, is to recognize that matters of the heart, though often less demanding , are just as important (if not more so) as the needs of the body.

2. Live while hurting

It is appropriate to acknowledge our hurts, but, after nearly three decades of living with someone who daily suffers from severe chronic pain, I have witnessed the difference between “living with pain” versus “living while in pain.”  My wife didn’t have to go to Africa and launch a prosthetic limb ministry.  She could have easily chosen to focus on herself and her own challenges.  She purposed, however, to give out her lack—and in doing so, she continues to touch a great many lives even though she can no longer travel.  She saw something worthwhile that didn’t not reduce her pain, but rather transcended it.  The lesson I learned from this is that is possible and rewarding to live a full and rich life while in pain.

 

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For less than $30 a month, you can provide a leg per year to an amputee.

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We don’t have to wait until we “feel good” before we participate and our successful in life.  I remember a special night in Madison Square Garden right after President George W. Bush gave his acceptance speech for the nomination in 2004.  Invited to be on the platform behind the President following Gracie’s performance at the convention two nights prior, we had to be in place  on the stage early in the evening.  For several hours we sat there, while my wife’s pain levels escalated.  She knew she would be uncomfortable, and she knew it would be a long night, but we lived in the moment together, and after the President left, we danced together among the fallen balloons and confetti while country singer Lee Ann Womack stood just feet away singing her hit song, “I Hope You Dance.”

Gracie did opt to forgo wearing dress shoes in order to be a bit more comfortable.  You can still see us in pictures sitting just behind the President’s left shoulder. Gracie’s robotic-looking legs are in plain view with her bright white sneakers—which I think is hilarious!  If Gracie and the President of the United States didn’t mind, no one else should!

3. Love while hurting

Everyone hurts at some point; even supermodels and professional athletes suffer physically at times. Using sickness or feeling bad as an excuse to disconnect from the needs of close relationships sets a horrible and destructive precedent that seems to say, “I can be focused only on me whenever I feel bad.”

Experience teaches me that life-changing and transcending love abounds when we choose to turn our eyes to others—particularly (and peculiarly) while carrying great burdens ourselves.

We cannot escape the relentless difficulties in this life; we do however, have the opportunity to embrace each other, even while in pain, and discover love—and romance, are not dependent on external circumstances, but instead reside solely in the heart. As the wonderful Rodgers and Hart song stated so well:

My romance doesn’t have to have a moon in the sky
My romance doesn’t need a blue lagoon standing by;
No month of May, no twinkling stars,
No hide away, no soft guitars.
 
My romance doesn’t need a castle rising in Spain,
Nor a dance to a constantly surprising refrain.
Wide awake,
I can make my most fantastic dreams come true.
My romance doesn’t need a thing but you.

 

4. See the heart, not “the chart”

Gracie_Peter_Dance

For caregivers I offer this advice: if the love of your life struggles with chronic disease or injury, take a moment to see beyond the medical chart, the broken body and the pain-filled eyes…and connect to the heart of the extraordinary person who captured your heart.  Due to medical circumstances, it may be one-sided, but that’s okay.

As a caregiving spouse, I am the only person on this planet not connected by blood or money who has volunteered to care for my wife in this manner.  That distinction is important and speaks to the core motivation I have for my wife:  I chose her.  The reasons I chose her are important and are worthy of celebrating.  Even if I have to sometimes buy my own Valentine’s Day card—that is still a beautiful way to honor the relationship.

And for those suffering who are able to do so—look deeply into the eyes of the weary soul who looks after you, quietly hold hands and bask in the love you both share; a love that is defying the odds.

Happy Valentine’s Day.

Listen to a conversation with Ken Tada on The Peter Rosenberger Show. Ken reflects on his 32 year marriage to Joni Earekcson-Tada.

A Conversation With Ken Tada

2014-02-22 11.06.01Special Valentine’s Day Episode of The Peter Rosenberger Show with Ken Tada.  A caregiver for more than thirty years for his wife, Joni Eareckson-Tada, Ken shares his thoughts on Romance/Marriage when a spouse has a disability.

Ken and Peter reflect on the journey they’ve both had as caregivers. (The two men have 60+ years of caregiving experience between the two of them). Also:  Gracie calls in to sing to Ken and Peter ….and as always, Peter’s producer John and his eclectic bumper music!!

 

 

 

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For less than $30 a month, you can provide a leg per year to an amputee.

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Ken also shares his about the recent Academy Award Nomination for the song sung by Joni …and then the Academy’s decision to rescind the nomination.

Click here to listen to past shows.

 

The Peter Rosenberger Show
Sundays at 3:00 CST 
1510 WLAC ( IHeart.com)
A show for caregivers, about caregivers …and hosted by a caregiver.
 

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January 27, 2014 by  
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Sandra Obenewa Twum Surgery (Age 10)

 

Sandra Obenewa TwumThis is an evaluation report from the teaching hospital in Accra for one of our patients, Sandra Twum (age 10).  Time is of the essence, and we could use your help to sponsor this surgery. Although we don’t normally sponsor surgeries, we are committed to helping Sandra.  Her leg is finished and ready to use, but this issue needs to be fixed before she can walk.

You can participate in helping her walk before Christmas!  It will be approximately $900 American dollars (1,800 Ghana Cedis).
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