Episodes
Monday Jan 20, 2020
As Caregivers, We're Not Being Delivered FROM It ...but rather, THROUGH It.
Monday Jan 20, 2020
Monday Jan 20, 2020
So many times, we caregivers cry out to God for us to be "delivered FROM" these challenges. Doing this for 34 years, however, I'm learning that God meets us in it ...and delivers us THROUGH It.
In the process, we discover our battle is not with our loved one's affliction, but instead ...the battle is with ourselves.
From HOPE FOR THE CAREGIVER on American Family Radio JAN 18 2020 (See the full transcript of the show below.)
Brought to you by:
HFTC January 18 2020
[00:15]
Live on American family radio, this is Hope For The Caregiver. This is Peter Rosenberger This is the nation's number one show for you as a family caregiver, for those of you who are knowingly willingly and voluntarily putting yourselves between a vulnerable loved one and even worse disaster. You get up every day and you do this, and maybe you do it from a couple hundred miles away and you're ensuring that finances are being met or that staff show up to do things or whatever. There's all kinds of different ways to be a caregiver. But the challenges on the heart level are still the same. And some of us are up close and personal doing it every day all day long. Some of us are checking in once a day. Some of us are supporting financially those who are. There's just a lot of different scenarios of this and some of us have had to take a step back. You may have a loved one whose alcoholism or addiction has created such a destructive swath that you can't participate up close and personal. But they have a chronic impairment and where there's a chronic impairment, there's a caregiver. And that would be you. You got a special needs child or you got an aging parent. You got somebody with a traumatic brain injury whose personality has changed dramatically. And they don't think or respond in the normal way adults would, and you're engaged with this individual every day. You got somebody who gets violent or mood swings, somebody who has mental illness.
There's so many different scenarios but there's always a caregiver for every kind of affliction. And that's why we do this show. How are you feeling? How are you doing? What's going on with you? We speak fluid caregiver here and we're very grateful American Family Radio, they see the value of this, they see the need. And family is the middle name of American Family Radio, and this show is all about the family caregiver. 888-589-8840, 888-589-8840. If you want to be a part of the show, and you don't really have to have any kind of important question, or some earth-shattering thing. Sometimes you just want to just talk to somebody and that's one of the things we encourage you to do on this show, is to reach out to somebody and have a conversation. Don't sit in isolation. You're why we do the show. We're taking community to the caregiver because it's hard to get out. It's hard to connect with other people. It's hard to know what to say. It's hard to know how to respond and it's frustrating. And you if you want to have a friendship or meaningful friendships in this thing, you got to have people that are willing to embrace the pain that you carry. And that's not an easy thing. And you feel kind of weird about sharing some of those things with people. I get that. Okay? You don't want to expose your loved one and you don't feel like having a drag everything all out on the table. I get that. And that's why we do this show. Because here, you don't have to bring me up to speed. On this show, we speak fluid caregiver. Okay?
So, 888-589-8840, 888-589-8840. I want to start off with a Scripture. I thought this may be appropriate. Well, Scripture is always appropriate but I like to be laser beam focused when it comes to the heart needs of a family caregiver. And this is a Scripture that I saw and it was-- I struggle with this. Okay? I struggle with looking all around and getting distracted. I think sometimes we as caregivers, you know, shiny objects and we get our attention span gets pulled in so many different places. Proverbs 4:25 and I'm reading in the English Standard version, but I'm going to do it in another one, in a paraphrase. “Let your eyes look directly forward.” This is proverbs 4:25 to 27. “Let your eyes look directly forward and your gaze be straight before you ponder the path of your feet. Then all your ways will be sure do not swerve to the right or to the left. Turn your foot away from evil.” All right. And I'm gonna read that from The Message. Okay? “Keep vigilant over your heart, that's where life starts. Don't talk out of both sides of your mouth. Avoid careless banter, white lies and gossip. Keep your eyes straight ahead. Ignore all sideshow distractions. Watch your step and the road will stretch out smooth. Before you look neither right nor left, leave evil in the dust.” What does that mean to us as caregivers? When you're taking care of someone, and you-- For those who are brand new to the caregiving journey, it may not mean as much to you right at this moment, but for those of you who have logged some real time in this, you're going to understand that we get pulled in all kinds of directions. It is so easy for us to be looking over to the right, looking over the left, looking backwards. We spend a lot of time looking backwards. But we spent a lot of time also fearing the future. And we're going to look straight in front of us and just deal with what's ahead of us right now. And that's how we do it.
Now, again, I would really encourage you to not ever think that I own all of this. But I'm reminding myself of these things. And I had a great visual just the other day. I'm in Southwest Montana and I went out on a snowmobile. I do that a lot, just to kind of clear the cobwebs of my head. And Montana is a big state and the mountains behind us are big mountains and I have a lot of cobwebs, so I need a big state with big mountains, I guess. So, I went out there with a friend of mine, neighbor down the road, and we went out riding, and I learned how to ride snowmobiles from his father. Now you think, “Well, how hard is it to ride snowmobiles?” Well where we go, there's no lifeguard on duty and we're not out there on nice groomed roads that are flat and smooth. We're doing some pretty intensive riding. And there's this one trail that I've been riding on for 20 years, and there's a lot of switchbacks on it and it's going up incredibly steep and the snow is very deep right now. We've had a lot of new snow and it's very deep and you really gotta be-- there's a lot of balance and there's kind of a trick to riding a snowmobile. You don't just sit on it and press the throttle. You really have to handle the machine in a certain way, particularly when you have deep powdery snow.
And this particular trail is basically the width of the snowmobile, it’s not much more than that. And on one side, there's a drop off of several hundred feet, and it's a fairly frightening trail. And every time I get up there, I kinda just clench up. I'm thinking, “Oh my man, why am I doing this again?” Well, I'll tell you why I'm doing again, because the view at the top of this trail is spectacular. But to get there, it's a little bit of a challenge. And when you come out of this one clearing and the drop off is so steep besides you, you're tempted to look at the view there. Because it's a great view that I've snuck a peek out of my peripheral vision and look to my right there to see this view on this trail, but then I quickly look back and didn't stare straight at the trail so I don't go off the cliff because that's what you call a bad thing when you go off the cliff. And I wait until I get up to a place of safety where I can look at the view from a place of safety. And I have to keep my eyes on the trail. I have to stay focused. I can't be distracted, I can't look around because there's real danger if I do.
And I think that's for us as caregivers, that's kind of where we are a lot of times. There's some places that we would love to be able to stop and view but it's not safe to do it. And we have to keep our eyes focused straight ahead and keep our head in the game. Not get distracted, not looking left or right, but just not even trying to sneak a view out of a peripheral, but to keep focused on the trail in front of us. “Thy word is a lamp unto my feet and a light unto my path.” We don't necessarily see 700 yards down the road. And on this particular trail I'm riding on, you're doing good to look 10 feet ahead before it switches back, but you keep straight in here. This is hope for the caregiver. I'm Peter Rosenberger 888-589-8840. We'll be right back.
[Music]
Welcome back to Hope For The Caregiver on American Family Radio. I'm Peter Rosenberger. This is the nation's number one show for you, as a family caregiver, you’re why we do this show. And because He lives we can face tomorrow that we are not paralyzed by the circumstances that we're in. We're not overwhelmed by them. It's not gonna be easy. And I heard a great quote the other day that says “Anybody says life is easy as selling something.” It's not. It's going to be hard work. But doesn't mean it can't be done and doesn't mean that you're going to be doomed to seeing ugly things in life for the whole life. There's beauty and joy all around you even in the midst of very difficult challenges. 888-589-8840, 888-589-8840 if you want to be a part of the show, we're live. How are you feeling? How are you doing as a caregiver? How are you holding up?
I know that so many of you are looking at very grim things every day. And there are times when you just hang your head in weariness. I get it. Been there, done that, got the T-shirt. Still feel that way at times. I really do. And so, what do you do when you get that way? How do you strengthen yourself? How do you work through that? Who do you talk to? Are you hearing messages from your pastor that are strengthening you? Are you calling anyone? Is anyone calling you? You’re why we do the show because so many of you are not engaged in a good church situation. So many of you are just by yourself and the only lifeline you have is coming through the radio or through your app that you're listening to, or whatever device you're listening to this show on, and this may be the only place where you're hearing anything that speaking to you is in the voice of a caregiver, to your heart as a caregiver.
So, I want you to take advantage of this show, I want you to take advantage of this time and be a part of it. Share what's on your heart. And I'm going to try to plow as many things into your heart to strengthen you along the journey, just as people have done for me, and I'm also doing it for myself. That's how we do it as believers. It's not a one and done by the way, it's not something you just get. Okay, I got it. I'm gonna go move on with the rest of my life. No, no, no, this is the rest of our life. We will be needing to say these things every day to ourselves. And if anybody tells you different, they'll lie about other things too. Because this is how it's done. You go back and look through all of Scripture, it is a constant reaffirming of the Gospel. It is a constant reaffirming of the work of Christ. It is a constant reaffirming of the faithfulness of God. God knows that we're scared. He knows that we're weary. He knows that we're struggling. Look through all of Scripture. You'll never find one Scripture says, “Hey, I know y'all got that. I'll see you around a little later.” He says “I'm with you always. I know you're scared but don't be afraid. Don't be afraid. Don't be afraid. Don't be afraid. I'm here. I'm here. I'm here.” Okay.
And I just can't stress enough to you these things on what it means to you as a family caregiver to be reaffirming these messages. I want to read another Scripture to you, Psalm 147:3. Psalms-- My mother tells me this a lot that Psalms is a great place to go when you don't really know what else to say or do. You can go into the Psalms and listen to others before you, particularly King David pour out his heart. But he wasn't the only one that was involved in the Psalms. There are others that wrote those Psalms and a lot of them are [??? 14:28], and they're struggling and you could see the shift in their faith, particularly in David Psalms when he starts off with you know, “I'm struggling, I long the Lord” or you know, all these things, and then he wrenches his will into the will of God and you can hear almost the wheels turning in his head as he is reaffirming his trust in God. Psalm 147:3. “He heals the brokenhearted and binds up their wounds.” Let me read it in The Message. “He heals the heartbroken and bandages their wounds.” How many of you as caregivers have had to dress wounds? I mean, I've done that quite a bit. And my wife has a lot of wounds. She had a terrible accident back in 83. 80 surgeries later that we can count, 150 other smaller procedures. She's got one right now that we're having to watch very carefully.
How many of you all have bandaged wounds? You know what that's like. Do you understand that you have ones that require bandaging, too. Every time you've dressed a wound, and some of the ones that we have to dress as caregivers can be fairly complex wounds. I've had to do dressings where I've had to gown up, you know, in mask and gloves and the whole thing, and that's not easy. And as you think about that, as you've changed a wound, as you look at a wound, as you look at an angry wound, an angry wound is a wound that is inflamed and red and irritated. You have wounds like that as a caregiver. Do you know that? You have wounds like that. But you also have a savior who bandages those wounds, who is tending to those wounds. And they don't heal overnight. Sometimes it takes-- gosh, it seems like it just takes forever for them to heal. And some wounds don't heal this side of heaven completely.
Do you understand? Can you picture what it's like to have a Savior that's bandaging your wounds as a caregiver? Let me describe what some of those wounds are. Maybe they’re wounds of resentment. Maybe you have been pierced all the way to the core of who you are by the very person you're caring for. Maybe they have said and done things to you that just cut you so deep and yet, you got to keep on being a caregiver. Maybe you're changing someone's diapers, an aging parent or whatever, who's just cursing at you. Or maybe you got family members who are criticizing you and you are showing up every day doing what they're not doing, but they're criticizing you and giving you lots of pointers and suggestions on how to do it better. Those are wounds. Maybe you've had church folk, pastors who have chastise you for your lack of faith. Maybe some of your wounds are self-inflicted. You brought this child into the world with a disability and you blame yourself for it. Maybe you're just continuing to just create your own wounds, by just beating yourself. You have a Savior you that bandages up all of those wounds and more. Did you know that? Did you know that that's who your Savior is. He heals the heartbroken and bandages their wounds.
Are you wounded today as you're listening to this show? Are those wounds front and center in your thoughts in mind. My dad, longtime minister, greatest influence in my life, and the song that defines his entire ministry is an old spiritual called Balm in Gilead. That's Balm, B-A-L-M, not B-O-M-B. Forgive my Southern accent. For those of you who speak Southern, that's not a problem, you understood what I was saying. But for those of you who don't, it's Balm, B-A-L-M, a soothing ointment. There's a Balm in Gilead to make the wounded whole. There is a Balm in Gilead to heal the sin soul. Gracie recorded this on her CD, you can get a copy of it, and I would highly recommend you doing so. You can go out to HopeForTheCaregiver.com and take a look at it. It's an extraordinary arrangement that she sang. And I was always-- I've heard this song sung so many times and I think they've tried to recapture the old spiritual sound for it, and everybody that I heard perform it growing up saying it like, you know, “There is a Balm in Gilead,” like they're singing Old Man River kind of thing. And I didn't think it needed to be performed that way. This is a song of lament, and from people who are in pain, that's the origins of the song. And I felt like it needed to be sung by someone who was in pain. And my wife has not known a day without pain since Reagan's first term—37 years this year.
And so, when she sings this, she's singing it from the depth of that pain and Gracie is a real singer. I mean, a no kidding singer. And when I played this for her, and I slowed it down and I played it for her to sing, she was in her wheelchair and she sang it live to track. Which, what that means for those who are not really in the music scene, whatever that much, we weren't punching anything in. he didn't have to do a bunch of takes with it or fix this or this. She just sang it. And what came from her was so extraordinary because she understood the concept. “There is a Balm in Gilead to make the wounded whole,” and she's wounded. Both of her legs are gone. Her body's orthopedically a wreck. She's wounded and she's had more bandages on her than other people I know. I don't know anybody who's had bandages on her like she has and wounds at least orthopedically and physically. But I would suggest to you that you as a caregiver understand wounds of that level too, just a different way. And I would also encourage you not to dismiss those wounds, that they are real, and they are painful, and they require attention. But the good news is you have a Savior that's giving you that attention. You have a Savior that knows how to dress wounds, your wounds. Your wounds as a caregiver. 888-589-8840, 888-589-8840. You don't have to have a question. Just call it just help one caregiver today. This is Peter Rosenberger. This is Hope For The Caregiver. We'll be right back.
[Music]
Welcome back to hope for the caregiver here on American Family Radio. This is the nation's number one show for the family caregiver. And by the way, I got the stats that we're also the nation's number one podcast for the family caregiver. You want to be a part of the podcast, it’s very easy. Just go to HopeForTheCaregiver.com, and it's all there at the website. And it's a free podcast, we podcast this show and other bonus materials, and all kinds of things that we do out there and it's a free podcast. And I'm very grateful for American Family Radio for seeing the value of what we do, and taking this message to this incredibly underserved population. For the family caregiver, for those who are knowingly, willingly and voluntarily putting themselves between a vulnerable loved one and even worse disaster. And sometimes we're doing it at the expense of our own bodies, of our own hearts, of our own wallets, of our own careers, all those kinds of things. How do you help these people? How do you strengthen the family caregiver? What does it look like? That's what this show was about. 888-589-8840, 888-589-8840.
I want to go back to the Scripture we started with— I want to kind of just drill down on this a little bit more so that you can leave this show today. After this show, my goal for the show is, is at the end of the show, I leave you a little better than I found you. You know, with something that you can hang on to that's tangible, right where you are as a caregiver. I can't take away your stuff anymore than you take away mine. I can't fix what you deal with any more than you could fix mine. But we can build each other up in this, and we can sustain each other. There's not a destination where you get to a point where you say “Okay, I've got this. I'm done.” Even at the grave that doesn't end for the caregiver. Because I maintain that the caregiver has a PTSD quality that affects them after the funeral. Now, I can't say that from personal experience because I'm still a caregiver. I'm in my 34th year of this. But I can say that with reasonable certainty based on the number of caregivers I've talked to, and the amount of time I've spent in this world, that just because your loved one passes away, doesn’t mean that the challenges you're dealing with and the things, the wounds that you're dealing with, just go away.
I think that's the mistake a lot of people make as they get into this world as a caregiver that it's, if we can just get them to stop doing this, then we'll be okay. But it doesn't work that way. And those of you with some real longevity in this understand that concept. It takes a while to figure that out. In the first, the beginning part of your journey as a caregiver, we spent a lot of time trying to run around in a flurry trying to do this and this and this and this because we're trying to fight off all the tigers that are attacking us. And then after a while, we realized the tigers aren't going to stop coming, and we got to have a different strategy. We can't just keep rushing out. We've got to replenish, we've got to stock up, we've got to endure this. And that's why when I wrote the book, Hope For The Caregiver and my other books and when I did the show and all the things that we do, it was always designed to equip caregivers to endure, not to accomplish or not to reign victoriously as a caregiver, but to endure but endure, with more calmness, to endure with more hope, to endure with more joy.
So, I'm not content to just kind of grind my teeth and survive this. I want to grow in it. More importantly, I want to see God differently in this. And more importantly than that, He desires to reveal Himself to us in greater depth in this. Everything in Scripture confirms that, and He reveals Himself to us in suffering. CS Lewis says, “Suffering is God's megaphone” because sometimes we just don't want to listen to the whisper. You know, I've never heard anybody say, “Well, I sure learned that the easy way.” That's just not the way it works for us, at least not for me. When you are the crash test dummy of caregivers, you know, and I've logged ample time at this. So, I've had enough time to make enough mistakes that you start seeing a pattern. Oh, oh, you can only run into a brick wall so many times before eventually, you're going to have to figure out that that wall’s not going to move. For some of us, it takes longer than others. For me, it took quite a bit of time but that's all right.
I want you as a caregiver to grab a hold of these concepts. I see a lot of people try to meet the needs of caregivers in the media and other shows or whatever. But a lot of them are talking about logistics, and then a lot of them talk about platitudes. You know, take care of yourself. Make sure you take care of yourself, and I get that. I get it and I appreciate it, God bless you. But on this show, we're going to drill down into the matters of the heart, because I think that's where the battle is for caregivers. See, if your heart is a train wreck, then guess what? Your wallet will be too. The way you interact with other relationships will be too. Your job will be too. And so if we speak to the heart and strengthen the heart of the family caregivers, then we provide a fighting chance for us to deal with these other issues. So, when I am faced with grim news from a doctor, or behavior, or the myriad of other things that can come at us sideways, where we're just trying to just live peacefully. And all of a sudden something just gets dumped in our lap that is just nuttier than a fruitcake, man. I mean, it's just crazier than a pit cocoon. And we're trying to somehow just get through the day and then all of a sudden here comes something that just, you know.
They say being a caregiver is like coming to a road looking both ways before you cross and then getting hit by a plane. And when those things happen, how do you reorient yourself? How do you recalibrate your brain and your heart? And that's when you go back to Scripture and see what Scripture has to say about those things. And that's the Scripture I started off with today, “Let your eyes look directly forward, and your gaze be straight before you. Ponder the path of your feet and all your ways will be sure. Do not swerve to the right or to the left. Turn your foot away from evil.” That's Proverbs 4:25 through 27. It seems almost on the surface unsatisfying for us as caregivers to hear things like that because we want answers. We want a sure thing. Tell us how to get out of this mess. And I don't see that it works that way. The way out of the mess is through the mess. And we want to be so delivered but we don't understand that we're being delivered through it of far more than just our caregiving challenges. And that's the heartbreaking thing I think for us as caregivers to realize that there's multiple battles going on. And the biggest battle is not the loved one we're taking care of.
The biggest battle is what's going on in our own hearts and the things that God is zeroing in on and just keep-- It's like He keeps pressing on this one spot until we cry uncle, and we realize, oh, that's what he's after. And that's painful. That's hard, I know. But then you go back and look at the other Scripture we read today. “He heals the brokenhearted, Psalm 147:3, and binds up their wounds.” He's not doing these things haphazardly and he's using the circumstances in our life to reveal something about ourselves so that he can reveal something about Himself to us in that. There's a lot of broken stuff in our life. There’s a lot of broken stuff in my life. And God is using these circumstances around me that I deal with as a caregiver to reveal those things in me so that I run to him. You just have-- It's a different way of thinking about it. But this is what I've learned in 34 years of this. And we watch somebody suffer, and those of you who've watched somebody in pain and watch somebody suffer, you're going to get this really well. But to watch another human being suffer creates a theological argument inside you. And it just bores down all the way to the core of who we are because it seems so unfair.
It seems so un-Christ-like, un-God-is-good-like, and you hear all these people on TV that are talking about this and being delivered of this and you go to have your breakthrough here. And yet you and I are on watching somebody in pain. You and I are watching somebody suffer, day in and day out. And we wrestle with the concept of the goodness of God in the midst of that. I cannot be alone in this. I cannot be the only one that wrestles with that. But it's in that wrestling, that we get a chance to see him in a way that we don't expect. That's the issue. Because at the core of it, I think it’s a crisis of faith. Do we trust God while we watch this? Do we trust God while we see this? You remember, those of you who are old enough to remember it well that 9/11 when the nation was so shocked by this unimaginable horror of attack, and the nation reeled. And for the first three to four days, you could just see the stunned look in everybody's eyes. And then you started hearing the questions on the news and so forth, you know, how could God, why would God? And people were doing this kind of thing, and they were wrestling with it? Did they ever answer the question? A lot of pastors try to go on television and talk about it. But think about it, when we're faced with tragedy, we instantly ask how could God allow such a thing? But when the tragedy fades, we put the questions away. But you as a caregiver, you got to look at it every day. How are you doing with the question? 888-589-8840, 888-589-8840. This is Peter Rosenberger, and we'll be right back.
[Music]
Isn’t that a great song? It’s Keith Green. “There are sometimes I doubt but you always find me out.” It's exactly what we're talking about. Keith Green, well you go on after the show's over, go just do some research. If you don't know who he is or who he was, he still is, he's with Christ now, but just an enormous influence on the Christian music world, but I love that song. “There's sometimes I doubt but you always find me out.” He knows you doubt. This is Peter Rosenberger. This is Hope For The Caregiver. 888-589-8840, 888-589-8840. “There's sometimes you doubt, he's gonna find you out,” and he is pursuing you. And sometimes the path that he pursues you leads you through these dark places that seems so unpleasant, so horrifying to us. And yet what he's revealing is going to trump every bit of that. I go back to what I talked about at the beginning of the show, when I was out on the snowmobile and I'm on that trail, and it is a frightening trail. I promise you, but the view is so fabulous. In order to get to where I want to be, I'm going to have to go on that trail. There's no other way up there. And others have gone before me, I can see the path.
I am smart enough to not go up there by myself, number one, and number two, just after it's a brand new snow …because that's how you get stuck. And I just don't feel like digging my snowmobile out on a cliff at this point in my life. But there are others who go up there all the time and they get to see that spectacular view, and we all get to rejoice in it. That's our journey as believers. This is what we're doing. This is what it looks like as caregivers. And the journey right now, some of us it is incredibly frightening. I get it. Weeping endureth for a night, say it with me, but joy comes in the morning. And that's the promise, that's the hope for us as caregivers. That's what I call the show Hope For The Caregivers. That conviction that we as caregivers can live a calmer, healthier and even more joyful life, this is not the end of the story. Even the grave is not the end of the story. And it’s really important for us to understand that, and if we don't understand stand it, then despair will overtake us. Despair is going to be nipping at our heels, no matter what. And we're going to constantly fight it, but we don't have to be overtaken by it. And we will be if we don't continue to wrap our minds and our hearts with the things of the Gospel.
Now, you can try it your way, you can try it not doing that. You can just shake your fist at God and walk away from all this and see how that works for you. I don't recommend it. This is 34 years now that I've been doing this. My 34th year of caring for a human being who's broken, who suffers and has gone through more trauma and surgery and all kinds of things that I care to recount on this show. Some of you are living in similar circumstances. Is despair overtaking you? If you feel that way today then I'm glad you listened to the show because as one caregiver to another. I just want to tell you these things. These are things that I've learned. These are things that I've seen, these are things that I've experienced, that I've touched, that I've witnessed. This is not my opinion. I don't even care about my opinion. But my experience, on the other hand, now that's a different matter. “They overcame by the blood of the lamb and the word of their testimony.” That's what Scripture says in Revelation. So, it is the redeeming blood of Christ that equips us and then our experience, our testimony, our personal encounter with [??? 40:59] Christ, that's how we overcome. And the implication is there something that needs to be overcome. And for you as a caregiver, there's something that needs to be overcome. And it's not Alzheimer’s, it's not autism, it's not addiction, it's not a mutation. Well, that's a lot of alliteration I just use. It's not the affliction that we need to overcome. He's already overcome all of that. It hasn't been manifested yet in your life, but it is overcome. That's not what needs to be overcome by us. That's not how we endure through this. What needs to be overcome is our own hearts; the rage, the resentment, the fear, the doubt, selfishness. You say, “How can I be selfish? I'm a caregiver, look at all the things that I'm doing.” When we say those things, look at all that I'm doing, we've already indicted ourselves. And you are, please, again, I always have to have this disclaimer, I think John, John's producing the show today. And I have to probably have a recording a disclaimer that the views represent-- The views expressed by this host are things that God is working on in his life every day.
So, we may have to have that disclaimer played because these are not things that I own, these are things that I know. When I go up that trail on the mountain, I didn't make that trail and I don't own that trail, but I know where the trail is. And that's our journey as believers, that's our journey as we walk through these things as caregivers. And we can somehow try to put the battle over here that well if we can just get, you know, mom to stop doing this or if we can just-- if this would just, if this would just. And you really think that's gonna make everything go away or that's going to make you all feel that much better? Nah. That's not where the battle is. I can't fight amputation. I look at my wife's limbs and we're dealing with some prosthetic stuff right now. She still got a sore on her limb because of a prosthesis that we're working back and forth with. For those of you who are not in the amputation, prosthetic world, you won't really get this as much. For those of you in the-- that have limb loss in your family, you will.
But for example, when you have diabetes and you lose a limb, they go above the bad tissue wherever the infection or whatever it is, that’s causing the limb to be dysfunctional. They just go above it and find a healthy tissue and that's where they amputate. And you usually don't have a lot of the fitting issues that you would normally have. I mean that when you do with diabetes and so forth because you're cutting away to good tissue, but otherwise the person has not been damaged in other parts where it would affect the prosthesis. I didn't probably say that as clearly as I would like. But when you come to a situation like Gracie, she was so traumatized, everything was broken. One of the residents, surgery residents told her prosthesis later that they stopped counting at 200 breaks. And when you have that much trauma, then fitting a prosthesis to traumatized limbs, this is where a lot of wounded warriors will get this because those wounds were, they were incurred through trauma, roadside bombs and so forth. And when you have scar tissue and all those kinds of things, it's hard to get these things to fit properly. And it requires a lot of extra work.
And so we're dealing with those kinds of things right now. But I'm not a prosthetist. I don't even play one on TV. I mean, you know, I know enough about it from a layman's point of it. We run a prosthetic limb ministry. You heard Gracie’s story just a few moments ago. And we do this and I know enough to get me in trouble. But I can't fight that battle. I can't do that. I don't have the time and the wherewithal to go to prosthetic school or become an orthopedic surgeon or whatever and do all these things. That is not what I do and what I can do. Those are not my skill sets. I can't fight that. But I can fight being a jerk. I could fight that. I can fight being demanding. I can fight being resentful. I can fight cholesterol. The country ham that a friend of mine sent me for Christmas doesn't help me fight that battle, but I can fight it.
Are you fighting the wrong battle? Your battle is not with your loved one. However poorly they may act, your battle is not with your family or friends. However poorly they may act toward you, that's not your battle. The battle is always within our own hearts. “When peace, like a river, attendeth my way, When sorrows like sea billows row; Whatever my lot, Thou has taught me to say, It is well with my soul.”
Is it well with your soul today as a caregiver? Is it? If not, why not? Is it because your loved one’s acting funky? They may be a catalyst, but that's not the battle. You want to know more? Go out to HopeForTheCaregiver.com. Get the book. Get the CD. Let Gracie and I play and sing for you. Don't do this alone. I’m so glad you joined us today. And get the podcast, we’ll have this out on the website later on. We'll see you next week. HopeForTheCaregiver.com. This is Peter Rosenberger. Healthy caregivers make better caregivers.
Monday Oct 14, 2019
If You're Going To Minister to a Caregiver, Be Prepared To Do This:
Monday Oct 14, 2019
Monday Oct 14, 2019
HFTC October 12 2019
Welcome to HOPE FOR THE CAREGIVER on American Family Radio. This is Peter Rosenberger. We are LIVE and are thrilled to have you with us. This is the nation's number one show for the family caregiver. For those who are putting themselves between a vulnerable loved one and even worse disaster. Maybe it's somebody who's aging, maybe it's a special needs child, maybe somebody who has an addiction issue, whatever the impairment there's a caregiver.
How are you holding up?
How are you doing?
That's what this show is all about. And we are glad to have you with us. 888-589-8840, 888-589-8840 if you want to be a part of the show, and you can also follow along on Facebook Live at Hope for the Caregiver. (www.facebook.com/hopeforthecaregiver )
And by the way, if we have technical difficulties with the video, I don't know what's going on. But our caregiver cam has given me fits as of late and I've got top men working on it … but bear with me. But you can always follow along there and then go to HopefortheCaregiver.com, our website. And then we'll put the show out on a podcast a little later …it's a free podcast.
Let me just stop for a second. I want to talk about something that has been weighing kind of heavy on my mind.
Some years ago, I was sitting in the hospital with Gracie, my wife who's now had 80 surgeries that I can count, and multiple amputations and it's just been a very long painful journey for her over these many years since her car wreck back in 1983. And she'd had … I don't know what surgery number this was, 50 or something. Who knows? We'd been there doing this song and dance for a long time. And I was just sitting there beside her, I wasn't doing anything, I was just reading a menu trying to think about ordering dinner for that night for her —seeing what she would like. And me too because the staff there by that time they knew me pretty well —they would bring me a sandwich too, which was always, I thought, was very nice. Anytime somebody brings me a sandwich I'm okay with it.
The room was very quiet—she'd had surgery about two days prior to that and pain management with Gracie’s situation after surgery is always difficult. And I was just sitting there watching, hopefully, she was getting some rest and she was in a pretty good sleep. And then I looked over at her and she was blue! She had stopped breathing.
I leapt up and I got the nurses in there and all these nurses just started parachuting in and rappelling down the walls. I thought I'd knew a lot of the people there by that time …but there were people there I've never seen before.
All of a sudden, this quiet little hospital room—and she didn't have monitors on at the time, which looking back at it was a mistake, not on my part, but it was a mistake —And this quiet little hospital room we were sitting in I'm sitting turned into a beehive of activity and doctors and nurses and so forth were just descending, alarms are blaring—the whole thing. And they didn't ask me to leave, evidently, they knew who I was. And they weren't concerned that I leave and so I stayed, and I watched quietly while they try to resuscitate my wife. And one doc who was—he was still in surgical garb looking like he just came out of the OR …and he was starting to intubate. I guess he was an anesthesiologist and he was starting to intubate her, and I asked him, I said, “Hey, look, she's a singer, use a small tube.” And he looked kind of over his shoulder, but he can't work and he said, don't worry, Peter. I know Gracie. And I didn't know this guy. I had no idea who this man was. And he obviously knew my wife, and so he was very kind about that— and they got her resuscitated and they started to take her off to critical care.
And the room, which had been quiet 15 minutes prior, all of a sudden as everybody left, this entourage of people pushing my wife's hospital bed left, the room kinda was just empty, and I was standing there by myself watching them leave. And I looked as the last one left, and I looked out the door across the hall, standing against the wall out of the way, was my pastor, one of my pastors, I had two pastors. And this one had come up, just happened to come up, and he just looked at me.
When you have an event like that, I don't know if any of you've all been through a situation where you've been with somebody who coded, but it can be a good bit—be very adrenaline driven. And also, there's this kind of deflating moment where you just kind of okay, you know, “what do you do now?” —and I just stood there for a moment as this whole crowd of people left with my wife —taking her to critical care. And this pastor looked at me. Hjust looked at me in the eyes. And I've never seen anybody other than my parents look at me with that level of compassion.
And he didn't say a word. A smaller man than I am, he reached up and he put his hand on my shoulder and he just held my gaze. He just looked at me. And I was so moved by that, I'll never forget the look on his face. He didn't feel the need to explain it, make me feel better or anything else other than just put his hand on my shoulder and just look at me —and he saw me. He didn't rush after Gracie, he saw me. And then we walked down towards critical care.
And I thought, you know, that's really kind of how you do it as pastors, as people who want to minister to caregivers. I think we're often in a situation where we feel this…as believers …we feel this compulsion to wash God's hands and explain why he does these or allows these things in our lives and the lives of others. And I think there's a sign of spiritual maturity when you stop trying to clean up after God, and you recognize that He's working in things that we just cannot possibly understand. And it's okay for us to trust him and we communicate that level of faith and hope and trust and peace in it. My pastor did not fill the air with meaningless words he just simply walked with me to critical care just as our Savior walks with us through the valley of the shadow of death.
That [event with my pastor] helped form the entire foundation of what I do is as an outreach to family caregivers. I cannot take this away from you and I cannot give words to you that are going to somehow make all this feel better and make you just [say], “okay, I'm okay now. I'm good.” What I can do is point you to safety and walk with you through it, through this medium of being on the air, so that you can hear a voice that speaks “fluid caregiver,” and that you can hear somebody that really truly gets what you're going through.
When you have people that want to somehow explain stuff to you, that's troubling to me. I don't have this-- What are you going to say? What are people really going to say? My wife’s had 80 surgeries, both legs amputated, lives with non-stop pain, and this has been going on since Reagan's first term. What’s somebody's going to say?
You know, in scripture, you look at John when Jesus was at that pool when those-- You remember that guy that was laying there on a pallet and he was struggling to get to the pool and he couldn't get there if the angel came up and stirred it and supposedly you could get healed and you know, all that kind of stuff going on. You remember that story?
What did the scripture say about that guy? He said he'd been there a long time. That's all it says. I mean he’d been born this way evidently and 38 years and it said it was a long time. The scripture didn’t somehow try to make this sound better than it was or explain it, and he’d been there a long time. Sometimes that’s all you do …is recognize, “it is what it is.”
888-589-8840, 888-589-8840 is the number if you want to be a part of the show. Have you been doing this a long time? How are you feeling? We're going to talk about this a little bit more. This is hope for the caregiver. This is Peter Rosenberg. I'm so glad you're with us. Don't go away. We'll be right back.
Welcome back to the show for caregivers about caregivers hosted by the caregiver. This is Peter Rosenberg, and this is the nation's number one show for the family caregiver. And we're glad to have you with us. 888-589-8840 if you want to be a part of the show. We may be having a little bit of software problem there on the phone line, so bear with us if you can't get through. We'll do the best we can and muddle through it. How about those apples? You can also follow along on Hope for the Caregiver on Facebook and we’re streaming the show, and you can follow along from there.
I want to go back to this topic, though, that I was addressing here of how to engage with the caregiver. What does that look like? And I go back to this pastor that sat there and watched me. You know, like I said, he didn't chase after the hospital gurney with Gracie on it as it was going to critical care after she coded. They had a whole team of people doing that. He just locked eyes with me, he just zeroed in on me, put his hand on my shoulder and didn't feel the need to say a lot of things. There's not a lot of things you can say. You know, and I think that's something that we as believers, it's counter-intuitive because we want to somehow just come in there and get some soap and water and clean up God's hands because he's obviously made a mess. And I just think that's bad theology. And I think that we have, as a culture of Christians, been the recipient of a lot of bad theology for a long time, somehow confusing the American dream with the Christian walk.
What we talk about on the show doesn't sell very well in that kind of culture because there's not a bailout for this. There's only fortitude strengthening, equipping and bearing one another's burdens. And you know this “name it and claim it” nonsense that's out there, and this “prosperity and wealth” and all that kind of stuff, you know, those are fine if that works for you, go ahead. I'm not here to just beat up on people about it but I'm talking to my fellow caregivers. And when you come, particularly you as clergy that are listening and hospital chaplains, military-- I've dealt with all these folks. And I think the ones that really have a handle on it that I've seen consistently as a group are the military chaplains. My dad was a military chaplain. And I've known a lot of them, and I have a very close friend of mine, a military chaplain that I talked with, every couple of days …and they understand that there's a war going on. And that ministering to people is not just simply saying, “hey, let's just you know, we're gonna pray real hard and squint your eyes real tight and this will all go away.” It doesn't work that way. And it's all about strengthening and being with people, that's what it is. And if we're not prepared to do that as believers, then what are we offering? And I go back and again, I looked at this pastor who just looked at me.
And if somebody asks, “Well, how do you minister to caregivers?” Here's how it starts. I'm gonna give you the vocabulary for this.
You look at them, and you quietly say to them, and I mean when I say quietly, I mean quietly. You know, God bless my charismatic and Pentecostal brethren and “sistren,” but you don't go up and start prophesying over these people. You're going to scare them right off the cliff, and they're standing right on a cliff. Be cool, all right? Just be gentle and quiet.
But the thing you want to do is you just look at them and you say, I see you, and I see the magnitude of what you carry, and I hurt with you. Start with that. It doesn't have to be any more complicated than that. You just see them.
If you've somehow feel like you've got to go in there as a minister, …and we get a lot of ministers that call the show, and I'll take the time with them, but I'm hoping to instruct them a little bit because they don't cover this in seminary. I've talked to too many pastors, they don't have any clue about how to deal with this in seminary. They deal with episodic crisis, but not the long term where it just stretches on for decades, people don't know quite what to say, or do or function. And so what we're trying to do on this show is give a different vocabulary of what it looks like to speak into the suffering. And what you're going to find is if you can speak into the long-term suffering with wisdom and clarity and understanding and compassion, and good theology— then you're going to speak into the short-term stuff as well.
See, when we're confronted with suffering, I've got this theory. If you hit your thumb with a hammer, you're going to cry out and you're going to react. Now, if you're alone, you may swear. If you're in front of other people, you may swear under your breath. If you're in front of a lot of other people, you may quote a scripture. That's funny by the way …
Regardless, you're going to react.
But as the pain subsides, the reaction stops. I mean, all of you, try to remember what it's like to stub your toe or hit your thumb or something, or you know, when you're walking barefoot to the house, and you hit it on a piece of furniture, — oh, I hate that.
So, you get that [pain] but you're not still reacting. You can recall that it was uncomfortable, but you can't recall the sensation of pain. Try it. You can't. So, therefore, you're not continually reacting, and you'd be kind of nuts if you were because the pain is not there. It's gone. It subsided, time healed it. Time lessened it. Time minimized it with that particular episode. Eventually, the ink on the divorce paper dries. Eventually there's grass, over the grave. Time has a way of lessening that pain to the point where you're not reacting like it happened just at that moment You may carry the residual echo of it, and the grief of it and so forth and the consequences of it—but the actual shock of the moment it's gone. And speaking of shock, that's when it gets to be so much our bodies will go into shock to deal with that.
Now, let me juxtapose that with chronic pain, chronic suffering, chronic heartache — that doesn't go away, the reaction never stops. It just keeps coming and coming and coming, and you've got to deal with that reality in a different way.
Now, when you're faced with trauma, go back, and some of you think about some of the trauma you've had in your life for the last, whatever, month, two weeks, a year. When you're faced with trauma, the reaction we have on an emotional level, is sometimes crying out:
“Why God?”
“How God?”
“What are you doing God?”
“What's up with that God?”
And these are questions that actually go to the core of who we are as people of faith. And it questions the very essence of our faith when these moments happen. But as time moves on, the pain of that, the shock of that lessens.
I remember as a collective nation when 9/11 hit, everybody-- We were seeing congress out there on the steps of the capital, they were singing “God Bless America.” They were just in shock and they were reaching out to God—they're struggling with God.
Well, look how much we’ve forgotten. I mean, we’re not only failing to reaching out to God as a collective nation, we've got people running for president that are just downright hostile to the people of God. It didn't last long, did it?
We put those [“WHY”] questions away after the shock is faded because we're moving on. But when the shot doesn't fade, we got to deal with those questions.
When the shock comes back from another episode, we're going to haul those questions back out, and we're going to struggle with that. We're going to somehow try to make sense of God's plan.
But we never really do. Because sometimes the things of God that are moving on this earth don't make sense and won't make sense. And in God's economy, it makes sense to God that Gracie doesn't have any legs. It makes sense to God that Gracie lives with pain all the time. It doesn’t make sense to me and I've asked all the questions. And people come up and they give me a platitude to say well, “God obviously has a purpose, or she wouldn't be here.”
Well, thank you, Captain Obvious! How useless is that piece of information to me!?
Or they'll come up and say, you know, “Well look at the testimony you guys have or the ministry you have.”
Really? You think I'm that noble? You think Grace is that noble? Yeah, we have a ministry to her fellow amputees in Africa that wouldn't have happened from all this stuff. But we're not that noble. She would rather have a pain free, able-bodied existence.
Those [platitudes] are not helpful. That's us just trying to fill up air with words that make sense to us. That's not what this is about. What we have to do as believers is learn to be able to speak the clarity of the Gospel in this, and sometimes, that doesn't involve words.
Sometimes it’s just like this pastor who put his hand on my shoulder, looked at me and didn't say a word. But I knew that I was being cared for. I knew that I was being comforted. I knew I was being shepherded.
He [God] never said he's going to take this stuff away from us. He never said that we're not going to have these things. He said, He'll be with us. And that pastor friend of mine, his name is Larry. He was simply with me.
This is why I do the show. I want you to have the same care that I got. Larry can't be all over the country, so I'm trying to take what he gave me …which he got from God, and just give it to you in the best way that I can —to let you know that you are not alone. And you do not have to endure this alone. And I'm not going to try to explain it, but I'm going to speak to you. This is what we do as believers. This is Hope for the Caregiver. This is Peter Rosenberger and we'll be right back.
[singing]
That is Gracie and Joni Eareckson Tada singing Because He Lives. Isn’t that great? I just-- boy, she can really sing and she's got a CD coming out here very very shortly we're working on feverishly finishing this up. you can get a preview a lot of those things at our website at HopefortheCaregiver.com. Just click on the music tab and you can get some of these things, some of the singles from there digitally right now, and you can get that duet. There's another one she did with Russ Taff that you’ll love, and just all kinds of stuff out there at HopefortheCaregiver.com, and the name of the book is Hope for the Caregiver. My newest book is Seven Caregiver Landmines and How You Can Avoid Them. And we talked about that a lot here because there's so many these little landmines out here that we hit as caregivers. I've hit every one of them, that's why I look the way I look. And don't let this happen to somebody you love. I mean, I am the crash test dummy of caregivers. If you can fail at it, I failed it, but you don't have to. All right? You don't have to. And this is why I do the show because I've had ample time to make so many mistakes on this thing, and that I've learned, the hard way, where some of these pitfalls are for us as caregivers—and for those who want to minister to caregivers.
And what I'm hoping I can do is I can give vocabulary to my fellow caregivers on what help looks like and inspire them to ask for that help and receive that help. And then I also want to give vocabulary to people who want to minister to caregivers, particularly clergy, so that they don't come up and just give platitudes or try to somehow explain this thing away. That we are somehow able to better equip each other to endure with this.
You know, if you go back and look at scripture, there’re so many phrases about endurance, perseverance, steadfastness, “stay strong”, “don't be afraid.” All those kinds of things in there, “It's going somewhere.” “This is going somewhere.”
God is taking us somewhere on this.
The question is, do we trust him? Do we trust him when our wife goes into respiratory risk? Do we trust him when we watch a family with special needs, I was at the prosthetist yesterday with my wife getting her legs worked on, and a lady showed up with her child that had orthotics’ need. A lot of prosthetists, you know, you have prosthetics and orthotics in the same place. Now for those of you who don't know what all this is that live in McDuncan, for example, Prosthetics are devices to help you to replace something that was taken from you. For example, a prosthetic limb, a prosthetic nose, a prosthetic breast, whatever you've lost …there are prostheses that are made for this. Orthotics are things to help you better stabilize what you have, for example, a back brace, a neck brace or children born with misshapen feet, club feet, that kind of stuff. Those are orthotics.
And there was a very, very, very severely disabled child that this woman was bringing in and she was with this-- and she had lost several-- She keeps adopting special needs children and cares for them. She has this massive van that she brings them in and just loves upon these kids. And you know, there's… what are you going to say? What are you going to say?
This individual who keeps pouring her life into these kids and precious children who are dealing with her horrific afflictions. And when you see things like this, it automatically pricks something in your heart to start asking questions of the Almighty. I've said this for years that when Gracie walks into a room, she creates a theological conversation —and she hasn’t even said anything! Because here's this beautiful woman with this just amazing attitude, and everything else that she has —and she's severely disabled. She's using two canes. She's got two prosthetic legs, the canes are for her back, not for her legs, the legs are fine. The prostheses are fine. It's just that her back is so trashed from all the surgeries and all the injuries and so forth.
And yet, she gets up and sings at church and does all the things she does. She put out a record, she goes to Africa, and helps her fellow amputees, and it creates some kind of theological issue.
There's “Okay, why would God allow such a thing?” “Why would God allow such a thing?” Gracie hadn’t even said a word and people start asking that question in their hearts and in their minds, and then they want to try to somehow answer it and figure that out.
And what I'm hoping that you'll get out of this particular show is that you don't have to figure this thing out. You don't have to explain why God does this. And even if you knew why God does this, is it going to make all of us slap our foreheads and say, “wow, makes me feel better?” All right?
We do not have to know why. The only solace for us, the only comfort, the only strength, the only reality for us is to know “Who.”
And as long as you keep spending a lot of time trying to figure it out for yourself and figure it out for others, you're going to end up frustrating yourself and causing damage for others. That is something that really needs to stop. As caregivers, we can't withstand that kind of onslaught from believers who want to come and constantly try to figure this thing out for us. We just can't do it— it's mind-numbingly frustrating for us.
And so a lot of people just stop going to church and stop dealing with it because they don't feel like having people work out their salvation on them. I've had people do that to me. It makes me fighting mad. I mean, to the point of just spitting mad. “If you had enough faith,” or this or this or whatever, all that just makes me mad. But I have to just keep those people arm's length because they're just hot messes as far as I'm concerned. I don't have time for their craziness. And they're not going to be in there trying to somehow take care of Gracie. They just want to parachute in and somehow say, “Well okay. Here's what we think.”
And I'm like, “Why do I care what you think?”
You’re tracking with me on this? We don't have to wash God's hands. We don't have to clean up behind him. And so many Christians are just convinced that they do. They just have to explain it so it makes sense to people. It is what it is. And as long as we are somehow trying to make sense of things that we are not equipped to be able to make sense of, we're going to live in frustration. But when we accept what is —and understand our role in this, that's where we can live in a calmer, more peaceful, and even more joyful place. And that's our journey as believers. This is our biblical task.
And again, we've just been the recipient of so much bad theology. I mean, just so much. And I hate that for me, I hate that for you as a caregiver, but I am trying to do something about it. And let you know that the gospel …the good news of the gospel… is not that “this is all going to be taken away from us today and we're going to feel happy, happy, happy all the time, time, time.”
The good news of the gospel is there's a victory that's already been won, and we trust him as we walk through this stuff! That's the gospel! The victory is already done and it had nothing to do with you and me. The only thing we can bring to salvation, I think Chesterton said this, the only thing we can bring to salvation is our sin. That's all we got to offer. Bill Gaither said, “Something beautiful, something good, all my confusion, he understood. All I had to offer him was brokenness and strife, but he made something beautiful in my life.”
Do you believe that? Is that important to you? Is that in any way reassuring to you? Are you engaged in that particular mindset where you're realizing that wait a minute, this isn't about me in this sense, this is about God and what he's doing? Do I trust him in this? And if I do trust him, why? Why am I trusting him? How do I know that I can trust him?
See, that's a better question.
How do you know that you can trust this Savior while you're watching a loved one deteriorate, while you're watching someone suffer, while you're watching an addict or an alcoholic in your life spiraling around the drain, while you're watching your wife code with respiratory arrest like I did that day …that I mentioned earlier, while you're watching a train wreck of a life, or this woman yesterday that I saw that was taking care of this special needs child that was in just bad shape? How do you know that you can trust him with these things?
And that's where the cross comes in. That's where the scars that He carries mean more than the scars that you carry. See, my wife has a lot of scars. She's got a lot of scars. She was very, very banged up in this wreck. One of the residents later told her prosthetist she had 200 breaks-- they stopped counting at 200 breaks, a lot of scars, but those scars are not permanent.
One day she’s not going to have scars. But His scars, now those are permanent, and one day we're gonna see those scars. And his scars that are eternal …means something for eternity. That's the Gospel. That's how we know we can trust him in this. How does that sound?
This is Hope for the Caregiver, we'll be right back.
Have you ever struggled to trust God when lousy things happen to you? I'm Gracie Rosenberger. And in 1983, I experienced a horrific car accident leading to 80 surgeries and both legs amputated. I questioned why God allowed something so brutal to happen to me. But over time, my questions changed and I discovered the courage to trust God. That understanding along with an appreciation for quality prosthetic limbs led me to establish standing with hope. For more than a dozen years, we've been working with the government of Ghana in West Africa, equipping and training local workers to build and maintain quality prosthetic limbs for their own people. On a regular basis, we purchase and ship equipment and supplies and with the help of inmates in a Tennessee prison, we also recycle parts from donated limbs. All of this is to point others to Christ, the source of my hope and strength. Please, visit StandingWithHope.com to learn more and participate in lifting others up. That's StandingWithHope.com. I'm Gracie, and I am standing with hope.
Welcome back to Hope for the Caregiver on American Family Radio. This is Peter Rosenberger, and this is the nation's number one show for the family caregiver, for those of you who are putting yourself between a vulnerable loved one and worst disaster. And it could be a special needs child, it could be somebody with trauma, traumatic brain injury, somebody with addiction issues, alcoholism, all kinds of stuff that are out there. Whatever the impairment and they are usually chronic impairments, there's a caregiver. There's somebody orbiting that individual, mental illness, whatever. It doesn't matter the impairment, there's always a caregiver. And sometimes the caregivers have thrown their hands up or they're exasperated, they're swearing under their breath or they're dealing with depression themselves. They're dealing with all kinds of resentment or whatever. And that's one of the things that I do on the show when I asked every caller, “How are you feeling?” Because I want to get to how you're doing. I don't want to know how your loved ones doing. Okay, that's not cold. That's not mean. That's just not the purpose of this show.
The purpose of this show is to talk to you, and I’m really passionate about helping caregivers learn to speak in their own voice. Too many of us don't. I can't tell you how many calls I've had on this show where I asked them how they're doing and they start rattling off their loved one’s chart. We can all rattle off our loved ones’ chart, man, we do that.! You know, we're experts at that. How about rattling off your chart, how about talking about how you're doing?
I have found and it is my experience and I've been doing this for a long time, that when caregivers start speaking in first person singular about how they feel, that's when the tears come. That's when the stammering comes, that's when the heartache spills out of them. They can get real clinical about a loved one. But when it comes to talking about how they feel, and what's going on with them, that's where it gets a little bit ugly and bloody. And that's okay. That's why I do the show. We've got lots of mops and Lysol wipes. God has an entire broom closet, just for us for our messy hearts. Because if we're not being real with it, all we're doing is living in some kind of level of denial, and we're pushing ourselves to the breaking point to not being able to function in a healthy manner. It is what it is. He knows it, you know it. Now let's talk about it. Let's get it out there. Let's deal with it. And let's not try to somehow put it in nice tidy packages.
We don't have to wrap this stuff up. We just don't, we don't have to make it more presentable to other people, and I don't have to make other people more comfortable with my situation. I'm not there to ease their burden. I don't necessarily have to inflict it on them, but if they're going to come up close to me, they need to understand it's going to cost them something. If people want to be in a relationship with Gracie, it's going to cost them something because it is painful to walk with her through these things. And those of you who know her that are listening, and I've got a lot of folks on Facebook and so forth that are watching, listening, they'll know it is painful to get up close to Gracie. A lot of people like to admire her from the stage when she's performing and all that kind of stuff, but it's a whole different matter when you're helping her take her legs off and she's in a wheelchair, and she's struggling and she's hurting and she can't even hardly see straight, she's in so much pain after the event. If you're going to be in a relationship with me, you need to understand that my life is intense. Now, I'm not going to inflict it on you but don't come up next to me and just parachute in and think you can just drop these little pearls that somehow you figured out. This is what I'm trying to help people understand when it comes to caregivers, and too many people that fill our pulpits, this is what they do to those of us who caregive. They found a verse somewhere in Zephaniah or something, and they think, oh, wow, man, I got it. And I'm going to go there and just deposit this on this suffering individual and I’ll feel better about my ministry. And we're over there thinking, “Really?” “Thank you very much[sarcastically]!”
If you want to minister to a caregiver, be prepared to weep. If you want to minister to a caregiver, be prepared to groan. And if you want to minister to a caregiver, be prepared that it's going to cost you something spiritually. You're going to have to wrestle with God and your theology is going to change. I'm convinced, I am convinced of this, that if you want to have any kind of effective Kingdom ministry in this world, you're either going to suffer or you're going to have to touch a lot of people who do. If you are not personally dealing with this, then you're going to have to be willing and actually touch people that do. And the more you insulate yourself from suffering, the less effective your Kingdom ministry will be on this earth. I'm convinced to that. If you disagree with it, that’s all right, you could be wrong too.
I remember a great quote I heard from Franklin Graham when talking about Samaritan's Purse. He said this is not the kind of ministry that you can run from behind the desk. You have to get out and smell it. And suffering and poverty and anguish has its own smell. If you don't believe me, you haven't touched it. It costs you something to minister to people, and that's why we should not go into this lightly. Paul says this, don't do this lightly. And so for you, clergy, you military chaplains, you hospital chaplains, you lay leaders, you people who want to do this, be prepared to not try to figure this thing out. Just walk with them. Just stand with them. Just sit with them. Just let them know that you see them.
I remember one of the greatest gifts that I've gotten as a caregiver. Gracie was in the hospital yet again. I mean, when you've had many surgeries as she has …we spent a long time at the hospital. Kids were with grandparents, and I came home to get some clean laundry for her. Gowns and so forth. And I was heading back up to the hospital, and some friends called me and said, “Stop by the house. It's on the way, you stop by here we got something for you.”
So, I swung by their home and I walked in and they pointed me to their kitchen table, I can still see it. And there was a hot bowl of vegetable beef soup, one of my favorites, and a big ol’ piece of cornbread and a glass of tea. And they said, “Your kids are safe, Gracie’s safe, you sit down here, you have the soup and cornbread we're going to stand over you, and you're going to be safe.”
That's how you minister to a caregiver. It’s not exotic, it’s not some kind of “send me on a big cruise or anything.” Sometimes it's just a bowl of soup, and a quiet kitchen table to gather my thoughts …and to know that I'm safe.
Do you feel safe today as a caregiver? Do you feel safe going to church? Do you pastors, do you create an environment where people can come in with trauma and feel safe in your church? If not, why not? What are you doing? Can somebody bring their special needs child into your church that makes all kinds of bodily noises and whatever or looks grotesque on any given day, and do they feel safe to do it? If not, explain yourself. Explain your ministry. Don't just go with your opinion …go on and verify it.
Luke 14, “go out to the highways and the byways and get them in, bring in the blind, the lame, the afflicted.” (Luke 14:21-23) See how well they do. See how well your people receive them. Because if your church is not receiving these kinds of people, then what are you preaching? What are you teaching? People say well, “I feel uncomfortable.” I don't care. Imagine how they feel.
If you feel uncomfortable around their suffering, what does that say about your theology? What does that say about you? I mean, in all fairness, it is uncomfortable to be around it, but that's what we're called to do. And so as we feel uncomfortable about it, that's how we trust him more in it. Honestly, this ain't brain surgery. Do you believe what you preach or not or what are you preaching? Do you believe what scripture says or not? People are suffering. People are bleeding, people are dying, people are hurting. And we as the church, have the hope of the Gospel, and what are we doing with it? Look at our country. It's a train wreck. Where's the church? What are we saying? What are we doing? This is what Hope for the Caregiver looks like … is that we can speak with clarity the gospel into this, that people can live a calmer, healthier and more joyful life even while suffering. Scripture is full of this of saying that very thing. Paul and Silas beaten in prison and they were singing hymns to God. How about you? HopefortheCaregiver.com. If you like what you're hearing on this show, help us do it more go out to HopefortheCaregiver.com today, right now go and take a look at it. We'll see you next week.
Brought to you by Standing With Hope
Sunday Sep 22, 2019
Palliative Care, Hospice, The PCHETA Bill in the Senate
Sunday Sep 22, 2019
Sunday Sep 22, 2019
"It's a very short step from 'I don't want to live like that' to 'No one should live like that.' We need more protection for people." - Nancy Valko (www.nancyvalko.com)
Palliative and Hospice care continue to confuse so many caregivers. While some programs offer amazing and beneficial services to families, others seem to be detrimental.
Involving the Govt. seems to give a stamp of approval of something ...but is it what it says it is?
How can we know?
Nancy Valko called HOPE FOR THE CAREGIVER on Sirius XM's Family Talk Channel (131) to discuss this.
Transcript of the Show:
[Music]
Peter: Welcome to Hope for the Caregiver, here on the family talk channel Sirius XM 131. I am Peter Rosenberger.
This is the nation's number one show for the family caregiver.
- For those who are putting themselves between a vulnerable loved one and even worse disaster. Somebody who is back and forth to the hospital.
- Back and forth the doctor's office.
- Stayed up late at night doing the laundry.
- Working with special needs children.
- Taking care of an aging parent.
- Has an addict or alcoholic in their life.
- Traumatic brain injury.
There’re all kinds of different impairments, and wherever there's a chronic impairment, guess what? There's caregiver.
How do you help the caregiver? What does it look like to help the caregiver? Why should you help the caregiver? There are 39,480 hours of programming every week on Sirius XM, but this is the one hour that is dedicated to the family caregivers. I'm really glad you're here with us. I'm really glad that Family Talk is doing this show, because there are 65 million people out there right now serving as a family caregiver. Actually, I think that's a low number. 65 million people who are doing this, and they're doing it without pay. You’ve heard a lot about the deficit we have with China every year. Well, guess what? That's $500 billion. That's how much unpaid labor that caregivers are providing every single year. Think about that. They're doing it all the time. I mean, nobody's making them do it, they get up and do it for someone. Sometimes we do it begrudgingly, sometimes we do it swearing under our breath, sometimes we do it with tears flowing down our face, but we still do it.
How are you feeling? If this is where you are, you’ve got an aging parent, or you got a child with special needs or you've got a family member or loved one that you are watching suffer and struggle, and all these kinds of things, and you're standing between them and a cliff. How are you holding up? That's what the show is for.
If you want to be a part of the show, 877-655-6755, 877-655-6755. We are live, and we're thrilled to have you along with us. Speaking along with us, here's the long guy, he's the tall man. He's the man who's never seen a sunset, he's so tall. He is the baron of the board, the Sultan of the sound, the earl of engineering, the man who put the word care on the carry-on luggage. He is John Butler, the Count of Mighty Disco!
[Music]
John: Hey Peter, how you doing today?
Peter: I'm just precious. It is a spectacular day. We got a very, very intense show lined up John.
John: Do we now? Does it involve carry-on luggage? Because I'm not checking these bags. Man, I’m not paying for that.
Peter: Not checking these bags.
Peter: Well, I've got a very special guest on, and I'm going to give her as much time as she wants to take. I don't do this often, but I was requested to do this specifically by my wife. It's my show, so I'm going to do what Gracie wants me to do.
John: Because you're a wise and good individual.
Peter: This is a very important topic that I have struggled with, and I am not alone in this as a caregiver, and we hear a lot of stuff coming at us, and we don't know where solid ground is sometimes. We're going to talk about palliative care, hospice care, the new bill that's up in front of the Senate, when's it right to die; all those kinds of things that are being thrown at us as caregivers as we go into this world, and it's hard to know kind of where solid footing is. So, I've got a very, very, very special guest on, who has a lengthy amount of experience on this. I'm just going to introduce her right now.
Her name is Nancy Valko. Nancy has been working as a critical care, hospice home health, oncology, dialysis and other specialties as a nurse for 45 years. She is now working as a Legal Nurse Consultant. She also cared for her mother that Alzheimer's who passed away with terminal cancer, as well as her daughter, who also passed away - she had Down syndrome. Nancy's got some real understanding of the caregiving world, both professionally and personally, and so I wanted to spend a lot of time with her today and let's talk about these things that are going on, particularly this new bill that's in front of the Senate. Nancy, how are you feeling? You with me?
Nancy: I’m just fine. Yes, I’m right here.
Peter: Thank you for being here. Let's jump right into this. Can you give me a glossary of some of these terms that we're throwing about here; hospice, and palliative and all this stuff, just kind of run us through it. Because some people have been in this world for a while, some people are just now getting into this world, and we don't necessarily know these things. So, I think these are all important things for us to know as caregivers. I would imagine you would agree with that?
Nancy: Absolutely, and it wasn't until like I said, I'm not a volunteer in all of this. I'm a drafty. I graduated from nursing school 50 years ago, the next month, we're celebrating our 50th year, and I've seen things change. I grew up in the golden age of nursing as I call it. In medicine, we Marcus Welby, M.D. For those of you who are older like I am, you might remember that Medical Center and there were all these wonderful doctors, and I wanted to be a nurse so badly, and I did achieve my dream. I was on my favorite job, what is now a level one trauma, working with the hardest of the hardest, and we took care of people. Our ethics were very simple; we did not harm a patient, we would do nothing to hasten dying, everything was understood. It was not a big deal.
I saw things start to change. What really got me was when I had my daughter, Karen, in 1982. Now, that was the year that we had the Baby Doe case. That was a little boy born with Down syndrome, who had a small hole between his food pipe and his windpipe. Then not an uncommon birth defect and routinely taken care of and the baby can eat and drink. However, in this case, the parents refused the surgery. They said their obstetrician told them that Down’s kids were just nothing more than blobs.
The pediatricians were very upset, and they went to a judge and like would normally happen, expected the judge to say, “Yes, he must have the surgery.” But this was a watershed case, and got national attention. The judge ruled for the parents saying that they had a right to make any decision of treatment or non-treatment they wanted to. The case was being taken up the line, appeal to different courts and lawyers were actually flying to the US Supreme Court and emergency when the little boy died. He died of starvation and dehydration at a week old.
We had heard about that. My husband was a doctor, and of course, I was a nurse. We had to Children, and I was expecting a third. We heard about it. We were just outraged. We said, “Well, we'll adopt the baby.” The parents refused all offers of adoption. They didn't want their other children to know there was a brother out there. I was so upset by him. We said, “What happened to ethics?”
I had been out for a while working with my children and volunteering at church and other places, and I was so upset about it. Someone said, “Well, what would you do?” And I said, “Well, of course, I'd operate.” She said, “You don't know, and you can't say until you've been there.” Well, a couple months--
Peter: Yeah, and now you’ve been there.
Nancy: Yep, a couple months after Baby Doe, I had my daughter Karen, and she had Down syndrome. What I was told at first was an inoperable heart defect, which was a shock. They said, “We'll take her home. We think she'll die in two weeks to two months, but you can come back for an appointment in three weeks.” I went home. This is the days before the internet. I got hold of the Down syndrome Association, I did research, I did all sorts of stuff, and by the time I went back to the doctor, he said, “Well, she looks pretty good.” I said, “Well, I've been researching this.” He did some tests, and he says, “Hey, she's got an 80 to 90% chance with one open heart surgery. It's not as bad as we thought.” But then he said, “But I'll do whatever you want.” I said, “Excuse me.” And I hope you decide not to do surgery. I let loose. I said, “This is discrimination against my daughter. She has to be treated as any other child would with the same heart condition. Her Down syndrome is irrelevant. If you can't do it, you can't be her doctor.” And he did say, “Oh, no, I'll do everything for her.”
That's when I thought, “Oh my gosh,” When my daughter was admitted for different tests, I question every doctor and nurse that came in, and I found some really bad attitudes. One doctor, since my husband was a doctor, he said, “People like you shouldn't be saddled with a child like this.” They said, “Then who should?” One nurse was so bad. I slept under my baby's crib, because I just didn't trust her. My trust was gone.
When she was four months old, she had to be admitted to the hospital for pneumonia. That's when I found out what choice really means. I was tipped off by somebody at the hospital that I worked at. He told me that my daughter was made a Do Not Resuscitate against my express wishes, and didn't tell me. I was stunned. I said, “Why?” They said, “Because she says you are quote too emotionally involved with that retarded baby.” That's when I knew that choice could so easily turn into no choice.
Unfortunately, we did lose her despite all care when she was five and a half months old, but the head of Cardiology at the Children's Hospital started Down syndrome clinic. I got very involved with the Down syndrome Association, worked with the Reagan Administration on Baby Doe Reg talks all over trying to get help for these children. We wanted something up there that these children have a right to be treated; any child with a disability.
I started researching; how in the world do we get to this point? I said--
Peter: Let me cut in real quick. For those who just joined, we're talking with Nancy Valko. This is Hope for the Caregiver. We're talking about some ethics issues that are facing us right now as a society, and it particularly affects us as caregivers. Let's fast forward from the Baby Doe to Governor of Virginia. We're still dealing with the same subject matter here that's going on behind the scenes. This is what Nancy's addressing. By the way, if you want to weigh in on this, the number is 877-655-6755. 877-655-6755. This is Hope for the Caregiver. Nancy, I'm sorry to interrupt on that, but every so often, I just want to let people know kind of what's going on, because we have people joining in and out that kind of thing.
Nancy: Okay, thank you. That’s fine, because I started seeing things, and my husband unfortunately, became very ill and I was supporting the family. I went back to nursing in the 80s. I was surprised to find out it was more business oriented than anything else, and it was quite different. I also saw how the ethics are changing. One thing I learned, that the year I graduated from nursing school was the year a lawyer called Lewis Kutner up in Chicago, published an article called Due Process of Euthanasia; The Living Will a Proposal. I went, “Oh my goodness.” I started looking into it, and what am I state of Missouri, they were talking about having a living will.
I talked to the people who are going to be pushing it. I said, “This is a problem, and they're actually taking feeding tubes out of brain injured people in the East. Paul, Brophy and Claire Comrie,” and they said, “Oh well, but this is only for people who actually dying.” I said, “It doesn't say that.” That's one thing I've learned and why actually got into--
Peter: Nancy, let me cut it there. One of the things I've always thought about that particular phrase, we're all dying. None of us is getting out of this thing alive here, and the mortality rate still at 100%. I've always struggled with that, “Well, they've only got six months.” And so why six months? Why is it not “seven months and three days” that kind of thing? Why do they always round it off to numbers that make sense to people, as opposed to factual data? That's always surprised me. “This is only for people who are dying.” Well, show me somebody who isn't.
Nancy: Six months is an educated guess. When I worked in hospice, we would discharge about 15% of our patients, because they live longer. Then we had palliative care, which at the time, and I was doing home health and hospice, we could then keep the patients longer and take care of them, which was great. Because they still needed home health. I thought this was--
Peter: I'm sorry, I keep jumping in on you, Nancy. I like to explain some things, because I don't want to assume that everybody's tracking with us. Palliative care, what is that before we go any further, what is that?
Nancy: That's what we thought. When I worked in oncology, and worked in hospice, there were palliative treatments, and particularly in oncology. That might be the easiest way to explain it. It's supposedly to help distressing symptoms, to relieve terrible symptoms, give help to the person and all, but in those days, we didn't have palliative care physicians per se. Instead of someone had a lot of pain, we call it a pain specialist. If they had trouble breathing, or they had a psychological problem, we would call on the experts for that. The palliative care thing really didn't start until later, which is why this has been a problem. Because with the living will that started and the six months, which is an educated guess anyway, became, well, just terminally ill.
Now in Oregon, which just passed the first assisted suicide bill, they've always said, “We have stringent protections, including, there has to be a 15-day waiting period and all that.” They've gotten rid of that already. That's what's happened with all of it. It went from the living will to taking food and water from people with brain injuries. We saw this here in Missouri. Even though the right to die people, which is what the euthanasia Society of America eventually became, they said, with the living will, “Oh no, we're not talking about taking away food and water.” And once it passed, they introduced another bill and said, “Don't use the first one, and it would allow the family members even to make that decision.”
Peter: Let me go back to Oregon for a minute. Give me a quick definition of the word palliative care. What does that mean?
Nancy: Basically, the relief of the distressing symptoms, and taking care of the whole person. Like as in hospice, in Cicely Saunders started that, is caring for the whole person physically, emotionally, psychologically, making death. We never hasten to cause death, but we wanted to take it as the whole process, and these people will be supported in every possible way, and that was--
Peter: Last year in August, a 28-year old woman shot and killed her special needs child, and then turn the gun on herself, but she was unsuccessful at killing herself, and then she was charged with homicide, I believe. How does that reconcile with what you're telling me and all these other things? Why would they charge her if they're allowing it to go on in other areas? What’s the difference?
Nancy: Well, it’s not a medical person. When assisted suicide was passed, and when all the sudden we had living will that allowed food and water and everything else be taken away possibly in the future or any kind of tubes, everything changed. If you're not a medical person, then you go to court. The funny thing is though now, we've seen this here in Missouri, these cases are rarely prosecuted. Here in Missouri, we actually had a nurse who without a doctor's order overdose a patient who wouldn't stop breathing after a stroke when she was taken off a ventilator. She gave an overdose of morphine, and a sedative such as the pain of all, which were used too. Anyway, the woman died, and the nurse felt guilty and did say something to another nurse, who reported to administration who then sent it to the county prosecutor. But the son thought she had done a wonderful thing. It was merciful. His mother probably would never be the same again.
The prosecutor for two years, I've written about it on my blog, for two years sat on it, and then finally decided to offer probation. The nursing board said, “Well, she's got this probation, and there was no other punishment for it.” She lost her job, and she was put on probation. When we don't enforce people killing people, we basically allowed it. I think case after case happening like that. A doctor in Holland recently tried to perform euthanasia on a patient was fighting him. They charged him. Well, it was only to make it feel a little harder, because they said, “Oh, no, that's okay.” And they wouldn't convict him of anything--
Peter: But a man in Montreal earlier this year was sentenced to five years for smothering his wife who had severe symptomatic of Alzheimer, and dimension, so forth and she was in bad, bad, bad shape. He reached the end of his rope and he smothered her, and then he gets five years in prison.
Nancy: It's entirely different. We had a case in Missouri where a family took their mom and was on the parent’s 50th wedding anniversary if I remember right, and she had a terminal illness. They went there and they gave her an overdose and she died. The prosecutor in this little small Missouri town, with operation wanted to prosecute, but there was so much pushback from the community. He said, “I couldn't get a jury to even hear it, and had to drop all the charges.”
We are having de facto legalization. There are some cases where they do come down hard on someone, but all these laws about homicide, whatever, it shouldn't make a difference whether the person is terminally ill or black or white or whatever. You don't kill another human being, but what they have done, since the ethics changed, like this one nurse put it, she said it changed from do no harm to relieve all suffering. Things started coming in that we hadn't had before.
In fact, a few years ago, I was almost fired for refusing to increase morphine drip on a man who was taken off the ventilator. They didn't quite know what was wrong with him, but they thought his brain was probably fried. There was no reason to think that, but that's what they thought, and I argued about that. When they took them off the ventilator, and he didn't stop breathing, that happens a lot. The doctor ordered a morphine drip. The nurse who gave me report said, “he said to increase it until the man stops breathing. With 30 milligrams right now.” I said, “I won't do it. That's euthanasia.”
I went up the chain of command. I talked to the doctor who had done the original surgery says I don't want to get involved. I went to supervisors who said, “Well, that's a normal oncology dose.” I spent eight years in oncology. There's no such thing. This is ridiculous. I went up to supervisors everything, and I turned the morphine off. The nurse who said, “The doctor said to increase morphine until he stops breathing.” She said I covered your. I wrote morphine for comfort, no limit. I followed the order turn the morphine off.
At the same time at another patient on a ventilator that was waking up. We took her taking her off sedation, we were going to wean off the ventilator the next day after her surgery, who had a lot of pain. I said, “Are you having pain?” She nodded. “Yes.” I said, “I'll call your doctor.” I said, “Sir, could I give her like one milligram of morphine IV? She's so uncomfortable.” And he said, “What are you trying to do? Kill her?” Both were equally stupid.
Anyway, I tried to wake him up and as a respiratory therapist was all unhappy about it, too. They didn't even give him oxygen. They just popped him off the ventilator. I went home, and there was no other nurse to cover for me, but I absolutely refuse and let them all know what up the chain of command. I went home, two days later, I came back, and he was dead, which I figured would happen. Because a lot of people were mad about it. I was called in the office, and they said the doctor wants you fired. I said I did nothing wrong.
They said, “Well, you're good nurse. How about if we just say we reprimanded you?” I said, “I will not accept that.” They said, “How about if we say we educated you on end of life issues?” I said, “I lecture on end of life issues. No.” And actually, I follow the order. He was not uncomfortable. So, there was no reason for him to have the morphine. They said, “We'll go home. We'll try to figure it out.” And some nurses got around our hospital. This was interesting. I figured I'd be harassed out of a job. I was a single parent with three children, so it was not an easy decision. Some nurses thought it was euthanasia, some thought I overreacted, it didn't make that big a difference, but on one floor, the nurses had similar case, and they came up and they said, “You made us think. We're so busy. We hadn't thought about it.”
The doctor ordered an excessive dose of morphine on respiratory patient, and they knew why. Every nurse went to the doctor, and said, “Hell, no, we won't do it. You do it,” and he wouldn't do it. The man had a natural death.
It's scary out there. I know--
Peter: Well, I've been in a lot of situations in the hospital with Gracie through her 80 surgeries that I can count. She's been anesthetized more times than I know. My wife lives with extreme suffering. This is not a situation that we are unaware of. We have watched this, we've had lots of conversation with payments with specialist. So, this is why I wanted to tackle this today. Get into this, and we're going to come back after the break here at the bottom of the hour. We're going to deal with the new PCHETA bill that's been reintroduced to the Senate.
I want you to talk about this. I want you to talk; why this is important, why do we as caregivers need to know this thing? I've said for a long time that we caregivers are sometimes all the standard between our vulnerable loved one and a cliff, and even worse disaster. Sometimes, sadly, that's happening right in our hospitals, and right in our hospices, and right in all these things. I've seen too many of these things.
This is Hope for the Caregiver. I'm Peter Rosenberger. If you want to be a part of this conversation, the number is 877-655-6755. That's 877-655-6755. We talk with Nancy Valko, longtime nurse. Now, she's a legal consultant with nursing. This is her passion to talk about, and get the word out there. We as caregivers need to be aware, particularly, those of us who live with someone who suffers chronically like this. Okay. Hopeforthecaregiver.com 877-655-6755. We'll be right back.
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Peter: Hey, this is Peter Rosenberger. Have you ever helped somebody walked for the first time? I've had that privilege many times through our organization standing with Hope. When my wife Gracie gave up both of her legs following this horrible wreck that she had as a teenager, and she tried to save them for years, and it just wouldn't work out. Finally, she relinquished. I mean, thought, “Wow, this is it. I don't have any legs anymore. What can God do with that?” And then she had this vision for using prosthetic limbs as a means of sharing the gospel to put legs on her fellow amputees. That's what we've been doing now.
Since 2005, was Standing with Hope. We work in the West African country of Ghana. You can be a part of that through supplies, through supporting team members, through supporting the work that we're doing over there, you can designate a limb. There's all kinds of ways that you could be a part of giving the gift that keeps on walking and standing with hope.com. Would you take a moment and go out to standing with hope.com and see how you can give, and they go walking and leaping and praising God. You could be a part of that at standingwithhope.com
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STANDING WITH HOPE: GRACIE Have you ever struggled to trust God when lousy things happen to you? I'm Gracie Rosenberger. In 1983, I experienced a horrific car accident leading to 80 surgeries, and both legs amputated. I questioned why God allowed something so brutal to happen to me, but over time, my questions changed, and I discovered courage to trust God. That understanding, along with an appreciation for quality prosthetic limbs led me to establish Standing with Hope. For more than a dozen years, we've been working with the government of Ghana in West Africa, equipping and training local workers to build and maintain quality prosthetic limbs for their own people. On a regular basis, we purchase and ship equipment and supplies, and with the help of inmates in a Tennessee prison, we also recycle parts from donated limbs.
All of this is to point others to Christ, the source of my hope and strength. Please visit standingwithhope.com to learn more and participate in lifting others up. That standingwithhope.com. I'm Gracie, and I am standing with Hope
A Healthier For You: How do you feel? Is your body sluggish? How about your mind? What about sleeping? Is that difficult for you? When you had your last physical, what did you learn about your health? Should you lose weight? If you're like so many caregivers, those are hard questions. You didn't get here overnight, and you won't change it overnight, but there are steps you can take starting today. Find more information at ahealthierlifeforyou.com. That's ahealthierlifeforyou.com.
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Peter: Welcome back to the show for caregivers, about caregivers, hosted by a caregiver. This is Peter Rosenberg, and this is Hope for the Caregiver. We're glad that you want to be on the show. It's 877-655-6755. 877-655-6755. I want to talk real quick before we get back to Nancy. I need some help. Gracie and I started Standing with Hope years and years ago. It was part of her outreach to reach her fellow amputees. We do prosthetic limbs for amputees over in West Africa. It's an extraordinary ministry. Standingwithhope.com. You've heard her ad here in the presenting sponsor of the show, but we collect used prosthetic limbs. They go to a local prison in Tennessee run by CORE CIVIC. It's one of their many faith-based programs. The faith based programs are great, because that helps give a better foundation for inmates, so that they don't return. Recidivism is not a good thing for them to keep coming back.
They have found that these faith based programs really do work. Inmates volunteer to work with us in this, and they disassemble used prosthetic limbs, so we can recycle parts from it. Not all of the things can be reused like the socket. That's molded specifically for that particular patient, but the knee, the pylon, the screws, the adapters, the connectors, the feet, the socks, the belts of it; all that kind of stuff can be recycled, and we do and then we purchase new materials send it all over there.
Well, we need some. We're out. We got some special needs right now going on particularly with above knee amputees. Maybe you know somebody, maybe you run a funeral home, and the family member doesn't know what to do with the prosthetic limb of a loved one who passed away, do not let it collect dust. Send it to us. Go to standingwithhope.com, standingwithhope.com or says, “Just donate a used limb.” It’s right there on the front page, and get involved and help us get the word out there. Because those things are like gold to people who are waiting to be able to walk. Okay, you got you got to look at the pictures of what happens, the transformative journey they go on, and let's make sure that we can help as many people walk as possible. They go walking and leaping and praising God, and it's an extraordinary ministry.
Alright, so we are back here with Nancy. 877-655-6755. If you want to be a part of the show, 877-655-6755. We are talking with Nancy Valko. She is a longtime nurse. 45 plus years in all types of nursing care; critical care, hospice, home health, oncology, dialysis, other things, but now she's a nurse legal consultant here. She's talking about bioethics, and what's going on in our culture. I think we were all just shocked when Governor Northern Virginia just let it out of the bag to special needs families, “Hey, if this child was born with severe, whatever, then we'll put the child aside, and we'll have a conversation decide what to do with.”
We were all shocked to hear it so clinically done. I mean, it was just like so matter of fact, and yet when we keep sending that kind of message, and it's been going on for a long time, when caregivers get to the end of their rope, they are struggling. They don't know what to do. What does, putting mama wouldn't want to suffer kind of thing. So, we end up being the decision maker or being the influencer of the decision maker if our head space is not in a good space. That's why we're having this conversation here.
I live with someone who suffers. 80 surgeries, both legs amputated, nonstop pain; all these things. A lot of people along the way thought it'd be just be merciful if she died for Gracie, but Gracie wants to live. That's what she just sang that song; rejoice evermore. I'm alive. Lift up my voice. Gracie is not only laugh, she is helping other people walk. She's got a new record coming out next fall. I mean, next month. She is very much alive. I had two children, now she's got two grandchildren, and yet it is contrary to what the world is offering.
Next month I'm going to have a young man. Well, he's 40 years old now named Aaron with Down syndrome. He was on last year. He makes an appointment to come back every year Down syndrome awareness month in October.
John: I'm so glad to hear about that. I didn't know that was going to happen.
Peter: Aaron's coming back. Aaron is an Elvis tribute artist.
John: It’s no joke! Yeah, absolutely.
Peter: He is deeply into it. He’s loves to laugh. He lifts up his voice.
Nancy is here today to help give us some understanding. So, when we go into these worlds, we need to be prepared. We need to be educated. We need to understand what's going on, and what we're going to be hit with, when we're dealing with somebody who's chronically suffering. If our headspace as a caregiver is not in a good space, then what are we offering to our loved one? I'm the loudest voice that Gracie hears most of the time. She would echo that with a lot of “Amens,” on multiple levels. John, I don't need any comments from you on that.
John: Of Course …nor stickers or guffaws.
Peter: If my voice is one of despair or critic criticizing or all doom and gloom, and all this kind of stuff, what's it going to do to her? If you--
John: What other voices that does that allow into the space? I mean, because you're rather vulnerable, because you’re in this condition and you've got all of these sensible professionals around you, and they might not be acting in your best interests, so it’s up to you.
Peter: They may indeed not be, and they say, “Well just go ahead. We don't want them to suffer kind of thing.” Gracie is going to suffer for the rest of her life, but that doesn't mean she has a bad life. She's the first one to tell you, and she's the one that said, “I need for you to talk about this on the air today.” Okay, so I'm doing it, because I listened to my wife, John. Nancy, I'm just kind of bringing you back to that. Sorry about that a little bit detour there.
Nancy: He's absolutely right. My mother told me years ago, “I never want to be a burden on your children.” And she never was. I never tell my children that, because they thought I was a burden when they were teenagers, and I wasn't even sick. We've got to get rid of this idea first. That's why most people--
John: Hey, wait a minute.
Peter: Now, you’ve gotten close to home now.
Nancy: That’s true when they have all the listings of why people do assisted suicide, this little records they keep on them in different states. That's one of the biggest things they have is a fear of being a burden on family or caregivers. With my mother, she always worried about that. Well, she wound up getting Alzheimer's, and then terminal cancer, and I was there. I was asked when she got Alzheimer's, “Are you going to feed her?” And I said, “Well, yeah,” I said, “She's not going to die of starvation and dehydration. Right now she gets up and goes to the refrigerator and eats ice cream out of the basket. Do you want me to tackler?” And they go, “No, of course not.” I said, “No, this is how it is.” That's how it was with my daughter. Because they offered to take everything off my daughter when she was critically ill. I said, “She will not die of starvation and dehydration. She will die of her condition.”
She was comfortable. My mother was also comfortable, and we spoon fed her at the very end. She had a wonderful… we gave her palliative chemo and radiation to help with the pain, because of where it was located in her throat, and she had a beautiful death just the way she wanted, and we took care of the pain. The problem is, if we have the society for the right to die that I talked to you about before has morphed into something called Compassion and Choices, and it's like a business. They are the ones pushing assisted suicide laws everywhere.
I spent a lot of my time going to different states and giving talks on this, but on their website, they say, “Well, if you are in a state that doesn't have it,” and this is what we nurses have been saying, there's other ways you can do it that are legal in any state. One is voluntary stopping of eating and drinking. They're working on advanced directives to stop even spoon feeding. If you have Alzheimer's, you can find a living will for that. They have terminal sedation, where they go, “We’ll make you comfortable.” And then they over sedate with whole food, water and critical medications. I've seen it happen. I fought this too; giving pain medicine, but over pain medicine.
I do have on my website; things to look for when you have a loved one or a friend in the nursing home, which I've had, I know the medicines and all, and I've had too many people call me and they said, “Mom was real perky.” And they said, “Well, we'll just put her in here, maybe start some palliative, hospice care.” That's what they're calling this now. What happen is all of a sudden, “Mom wasn't that awake anymore, and she didn't want to eat.” and they go, “Well, she must be dying?” It was until later what they realized. I have tips on my blog for what to look for in that. Now with compassion and choices--
Peter: Can you give us one of those tips just off the top of your head right now?
Nancy: Oh, things like most of them have to have care meetings and stuff. Make sure you're in there. Know what the medicines are. Know what the doctors. I ask all the doctors, “What's your position on assisted suicide?” That's a good bellwether, and you can educate people, but know what they're getting. I was going through these care meetings, I would ask constantly, “Okay, what are the PRNs? Is she getting anything as needed, any pain medicine or whatever?” I kept very close watch. I watched her--
Peter: Nancy, you throw out a lot of information. Even though most of my audience that are caregivers understanding things, what's a PRN?
Nancy: That's an as-needed medication.
Peter: Okay, and so you go into these meetings, you're very aggressive and you are very educated, and you understand these things. A lot of people are in this role as caregivers for the first time, and they don't know these things. They don't know what to do. They don't know what to ask sometimes. We got to make it simple for them, and hopefully they can borrow a little courage from you. When I first started doing this with Gracie, whatever the doctor said that was gospel. Because I didn't want to question doctors. I was brought up to do that, and then I saw--
Nancy: We all need to go over that.
Peter: I got over it. I remember one time, but the first time I did that, I stood up to an orthopedic surgeon. I mean, I was 26 years old. I was just a kid, and then it morphed into… I remember telling one doctor, I said, “Look,” and he was giving me all kinds of static, and I said, “Look, I've been taking care of her since she were in junior high school. Let's get it together here, buddy, and keep this in perspective. It doesn't hurt that I'm a second degree black belt,” but that didn't enter into the equation. The point is so many people in this, and they don't have that courage to do that. They don't have that wherewithal to do these things. I want to make this as simple for them as possible, so they have these care meetings. Can they shoe out the caregiver, can the caregiver be there? How do you make sure the caregiver can be there?
Nancy: I found when I took care of the woman who founded Doctors for Life, I was her medical power of attorney. I found out about, I asked them, and sometimes they kind of forget. I knew what it was. I said, “We need to have one.” I am very aggressive, and even as a nurse, I would take on the doctor sometimes when I felt it was absolutely necessary. This is why I wrote my blog. I've been writing for years. I was a reporter for the National Catholic register, I've written for women's magazines, I've written secular things, I've written journal papers, but I started my blog, and it's called A Nurses Perspective on Life, Healthcare and Ethics. The reason I did it is I wanted to tell people what was going on, and what to look for. It's like, “I have six things you must know about physician assisted suicide,”
Because when I travel, I talked to legislators. They haven't read their bills. They don't know that the doctor gets complete immunity, and that the death certificate must be falsified for privacy, but it's actually so nobody knows, and it has no coverage, no documentation of what happened, except that they got this prescription, the doctor doesn't have to be there and usually isn't. If there's a complication, isn't reported many times, there's just a lot with it and legislators go, “You're kidding me.” We have to understand that legislators, sometimes they're not lawyers, and they depend on lobbyists to talk to them passionate choice, but very, very--
Peter: Don't get me started on what legislators are--
Nancy: But they do. They come back again and again. I've been in Massachusetts, in Maryland and recently and they're coming back again this year to try to get it through. They have even, and there was a bill that was defeated in Delaware, where they put assisted suicide as a palliative care option. This is the problem. All this terminal sedation, stopping at eating and drinking or spoon feeding and extra medicine, is called palliative comfort or even routine hospice care for such patients. You have to make sure, if you've got somebody in hospice or a nursing home, and I know good hospice, I was actually asked to be the director of a hospice, but I didn't. Because I saw what happened. It went from game Cicely Saunders thing of we never hasten or cause death to the patient’s choice. Everything was the patient’s choice, autonomy. That's when ethics changed. I couldn't take it, because I saw where it was going, and I knew I would be getting into trouble.
Peter: Let me back up, because we got to cover one thing. On that particular issue, the patient’s choice, if the patient is in a state of despair, and they don't have anybody around them speaking life to them, then of course, their choice is going to reflect that. This--
Nancy: That doesn't even cover it. I worked on a bill here and in Missouri, but what happens is, is now hospitals, many of them do, we found this happen in Missouri, have medical futility guidelines. Some of them are secret. What happens is sometimes everybody thought when, “Oh, well you have a right. The family can make this decision if somebody's unconscious.” They found out some families who aren't making quote “the right decision”, so they overruled them. We now have a law in Missouri to make sure that parents of kids with disabilities are notified if they want to put a Do Not Resuscitate or comfort feedings on their baby.
We had to fight for five years in the Missouri legislature before we got a pass this year. A couple that were nice enough not to sue instead said there ought to be a law. Beside themselves, they didn't know why their baby wasn't being treated when he started going bad, and found out he was on comfort feedings, and he'd been made a Do Not Resuscitate without their knowledge. We're trying to say, “Stop that for everybody.”
So, sometimes, like I found with my daughter, Karen, when I said, “I want everything done.” My pediatrician went behind my back and made her Do Not Resuscitate unnecessarily. This is what's scary, but Compassion and Choices has been pushing assisted suicide, and all of this, and with Carrie, you have to understand. I'm spokesperson for the National Association of Prolife Nurses. We're a group of nurses. We strive to seriously care for our disabled, terminally ill, any patient with the compassion and that very highest of ethical standards. We applaud that with medical innovations and supportive care options that can help our patients and family attain the highest quality of life possible. However, with this palliative care, Bill, compassion and choice--
Peter: Wait, wait, this is the one in Missouri right?
Nancy: No, this is the one in the US Congress right now.
Peter: This is the PCHETA bill.
Nancy: Yeah, it’s the--
Peter: We only got a few minutes. I need you to really hammer down on this one. Exactly what it is that you want us to know about this? What is it called First off?
Nancy: It’s called the palliative care hospice education and training. It was brought up supported by Compassion and Choices, who have said they have a mission statements, and we employ educational training programs, and that they wanted their federal policy a general established federal payment for palliative care consultations by train palliative care specialist, who will advocate and support the values and choices of the patient.
Well, this is why we consider this bill so bad. Because what it is, is all about training these people, and making them good. The problem is--
Peter: Who's sponsoring this bill?
Nancy: Well, they've got several sponsors, and it was done as, “Oh, we want to make palliative care available to everybody, and we need to train people.” However, there is not the need for that. One of our people went into it and it will cost like at least $86 million. Nothing goes to the patients. It's to promote education. It gives federal grants to all these groups say, “Oh, we want to have a training program.” The problem is the federal funding, and what we're afraid of will teach and institutionalize the unethical practices, including assisted suicide without sufficient oversight, penalties or safeguards.
The first bill when it came out, it was stopped, but then Compassion and Choices backed off when they put a thing in there that federal funding could be removed for objectionable practices furnished for the purpose of causing or assisting a patient's death for any reason such as assisted suicide. However, that was an old clause that actually said this does not apply to withdrawal of other treatment or feeding tubes. That's not good.
Some of the biggest and most influential hospice and palliative care doctors are not good. One of them is Dr. Timothy Quill. He's a Board Certified palliative care physicians, 2012 President of the American Academy of hospice and palliative medicine and a promoter of legalizing physician assisted suicide in terminal sedation. He went to the Supreme Court in 1997. I wrote the nurses brief on that. I helped to do that, or he was trying to get assisted suicide considered constitutional. He lost nine to zero, but he's not through yet. He'd be one of the people that could get these grants quite easily. There's no oversight who gets it. They apply for so--
Peter: So, what do we need to do about it? Who do we call?
Nancy: Well, I tell people to contact their legislators in Congress. There are ways to do that. I had that on my blog too. Because we've joined with others like the Euthanasia Prevention Coalition and Healthcare Advocacy and Leadership Organization and other organizations and opposing this.
Peter: Well, we contact our Congress, I'm just wrapping up, because we're going to run out of time here. Tell me in a nutshell, why is this important to the family caregiver?
Nancy: This is important, because this is the kind of stuff that they don't know about. I have seen personally doctors tell family members, “Your loved one is brain dead. Your loved one will never have a normal life. Your loved one is going to die.” That's wrong, but it wasn't true, and I said the problem is by the time I left ICU nursing, I was hearing some of the people I work with say, “This person needs to die.” and I go, “They're not even asking for it.” He's, “Well, I wouldn't want to live like that.” But I says, very short step from I wouldn't want to live like that, to no one should live like that. Right now, we don't have enough safeguards for our people. That's why we're doing this.
We need more programs like supportive programs, and good programs, but this is just for training, and media outreach and all this other stuff, and it will become institutionalized. This is just wrong. Like I said, they've even got futility policies that can overrule. Usually, an ethics committee and a hospital can overrule the family. I was in on one case where we had a 5-year old who was on a ventilator. She had one problem, and eventually was going to kill her, but the family kept saying, “No, let's get her off the ventilator again. We don't want to just take it off.” And she was totally the Children's Hospital. It happened to be a Catholic Children's Hospital, “A new doctor is coming in on Monday, and he will remove it no matter what you say.”
They called me on a Friday night. We couldn't get any lawyers. So, I told them say, “You want an ethics committee meeting first thing Monday morning, and tell them that you're bringing a tape recorder.” One thing they're afraid of is lawsuits, and that solve the problem.
Peter: Well, and that that brings me to a point here that we as caregivers need to have good legal care to look at all these things. It's too much for us. I get this, and I have that, but it's very expensive to have good legal care, isn't it? No, it's not. Let me tell you why. caregiverlegal.com something I do, $24.95 a month. caregiverlegal.com, I have full access to eight entire law firm through this program. If you are living your life without this, you're asking for trouble, because you've got to have a legal care representative in your back pocket, so that you don't get picked pocketed by all these things, and you don't get taken to the cleaners, and you don't get all of a sudden down this road, and you realize that your wishes are not being met here or your loved ones wishes, and you really need to have good legal representation. That's caregiverlegal.com. Check it out. Just go take a look at it, and I'll talk to you about it.
Nancy: Most people don't know, in July, the Health and Human Services Office of the Inspector General came out with devastating report on problems in hospice. That 80% of them had at least one deficiency, and some of them were very dangerous. This is the kind of stuff is important. This is the kind of information I try to put on my blog. Because I call so much stuff from… I do research, medical research, I talk all over, and I do a lot of voluntary caregiving, including a 97-year old woman who when she broke her hip, and when she was 95, the family was asked, even though she was perfectly conscious, “Do you want us to put her in hospice?” Luckily, they were smart enough to know that was wrong. She's 97 years old, and still kicking today.
Peter: Well, I appreciate you taking the time on all these things. You've given us a lot of information, and I'm putting it out there for my fellow caregivers. We have to be alert. The world has changed, and there's not even an effort to discuss some of these things now. I remember the conversation with the governor of Virginia when he was just on the radio, just like we're having a conversation radio right now, and just was very matter of fact that, “We just put the kid over there, and we'll decide what to do with that kid a little later.”
Nancy: The media doesn’t give you the whole story. I’m an ex-reporter.
Peter: Well, don't give a story on the media. They don't give the whole story a lot of times. It’s fake news, believe me, they're no good. I want to talk about this, because as caregivers, we have to, I'm sorry, this is our journey. Part of it is we've got to step up and be there to be that second set of eyes, the second set of ears, we've got to protect these people. A lot of people wouldn't want to live like my wife, and yet she has an incredibly productive life. It's not easy, but this is what we have to do as caregivers, is be able to speak life to it, but if we're not giving somebody speaking life to us, how are we going to be able to speak life to our loved ones? How are we going to be to be alert and be protect?
We're going to put this out on our podcast, Caregiver Podcast, and it'll be free for you to have. Nancy, thank you for joining us, nancyvalko.com V-A-L-K-O, nancyvalko.com. This is Peter Rosenberger. This is Hope for the Caregiver. hopeforthecaregiver.com.
We'll see you next week.
Wednesday Jul 03, 2019
Caller struggling as husband suffers with chronic pain
Wednesday Jul 03, 2019
Wednesday Jul 03, 2019
Watching someone suffer with chronic pain remains a heartbreaking reality for so many caregivers. As a spouse of a chronic pain sufferer (Gracie's dealt with this for 36 years), I personally understand the frustration, despair, grief, and helplessness in watching a loved one suffer.
Laura called the show to share her difficulties as she watches her husband suffer. One of consistent challenges caregivers face in this particular journey is despair and feeling isolated and alone ...feeling that God has abandoned them.
We're not alone, and God hasn't abandoned us. Listen to the conversation.
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