From HOPE FOR THE CAREGIVER 10/30/2018
MUSIC INTRO (Gracie and Joni performing Through It All)
If I’d never had a problem,
I would not know Jesus could solve them.
I’d never know what faith in God could do
That’s Why … Through it all
I’m learning to trust in Jesus…
That is Joni Eareckson Tada singing with my wife Gracie.
They’re both on the phone right now—good afternoon, ladies!
Good afternoon, Peter, and thanks for having me on the show.
Well, it’s a pleasure to have both of you. I’m going to start here, Joni, with you. We’re going to get right to it because I know that you’re getting ready for a big conference right now. I really appreciate you calling in this afternoon. Gracie, you hang on for just a second…I can talk to you anytime, Gracie! No…I’m just kidding. I love both of you.
One of my favorite people
Joni, you’re one of my favorite people in the whole wide world and you…this is an issue that you are having some very serious conversations with nationally. We want to talk about Senate Bill 693. I’m gonna jump right into it. Talk about it. What is it and why is this important?
Well, virtually every disability advocate in my network, as well as those involved in elder abuse, are deeply concerned about, again Senate Bill #693 (I want our listeners to write that down), Senate Bill 693.
Now basically this bill will do two things: it will pour a massive amount of taxpayer dollars into federal hospice programs, including Medicare hospice programs; plus secondly, there will be new and much more liberal hospice education for those programs, more relaxed regulations as it were.
The Reason I’m Against It
Now the reason I’m against and disability advocates are against and senior advocates are against this bill is because existing federal hospice programs we all know are plagued by tremendous fraud, poor quality care, rampant abuse (and many say murder), and a gross waste of taxpayer dollars. Under Medicare hospice programs, records show that staff administer high doses of unneeded medication so that their medical records contain documentation that justifies billing Medicare for these expensive drugs at a higher billing rate.
So, I’m encouraging people to vote “NO” on Senate Bill #693, and because again, a massive amount of federal funding is going to be poured into a federal hospice program that’s fraught with abuse of patients who are not even terminally ill. When I talk about new regulations and a more liberal education of this bill, the new language in this bill does not require hospice patients to be terminally ill to receive lethal drug doses. So things of this sort are of great concern to me and every disability advocate, every senior advocate.
A Bill on the Move
This hospice bill has moved into a new committee meeting in the Senate, the Committee on Health, Education, Labor and Pensions (HELP). To us, a “NO” vote means NO to elder abuse, it means NO to unnecessary suffering and death, it means NO to fraud and waste…and especially abuse! So I’m hoping that my friends, all of our friends who are tuned in today will call their senators, write their senators, email their senators. If you don’t know who your senator is in Congress, then just Google your address and ask for your representative before Congress and you’ll get all that information.
Just Vote No
Just tell your senator that you want them to vote “NO” on Senate Bill #693. Let’s not expand funding for federal hospice programs until existing problems are resolved. Congress just can’t! They must not throw good money after bad. So basically, Peter, that’s my campaign speech. I know you have many, many, many listeners who care about these issues.
I’m…I’m listening to your comment saying let’s get Congress to not throw good money after bad. And I’m thinking, Joni, you know, (laughs) that’s Congress! By definition, that’s what they do — they throw good money after bad. (laughs) But I, I think that this is an incredibly important topic.
You’ve written about this a lot. I’ve written about it some…not on this particular bill, but I’ve written on some of these things. But you’ve written quite a bit on this. What’s a good place for people to go if they want to see some of the things that you’ve put down in writing about it…articles you’ve done, blog posts, so forth? Is it just your website?
Well, my website, yes, of course. Joniandfriends.org.
But I wrote a book earlier this year called “When Is It Right to Die?” And that’s a question that we all wonder about when we deal with significant disability, when we deal with life-altering injuries or illnesses, when we’re taking care of an elderly parent who is suffering from dementia. We want to know when is it right to die?
“When Is It Right To Die?” – Joni Eareckson Tada
How do I find that clear distinction between promoting treatment which will extend my loved one’s life significantly (and that’s a good thing to encourage life) or when am I promoting treatment that will do nothing more than prolong the process of dying?
We all want to find that clear line, that clear distinction. We want wisdom, we want guidance as to how to know when a person is actually dying, and when should they receive treatment that will indeed help their life…to which they should be helped?!
A Practical Guideline
So this book, I think, is practical guidelines, Peter. And I thank you so much for giving it a solid thumbs up as you have in the past. People can find out about this book by just visiting amazon.com, or Christianbooks.com, or they can visit joniandfriends.org. I know Gracie, your wife — she’s such a good friend of mine — has got some strong opinions about this as well.
More & more people who are terminally ill are choosing assisted suicide. She doesn’t hold to the position of life support when death is imminent. Instead she gives practical help to meet the hard, cold realities for those facing, or considering, death.
Well, Gracie has strong opinions about everything! Uh…Gracie?
One of things I wanted to ask both you all (Gracie, I want you to go first and then Joni, follow up with this) — when I first saw this bill and it calls for a lot of education about hospice and palliative care and so forth, my first question was what kind of education? Who’s writing the curriculum? And I wondered if there were individuals that will speak to somebody…both of you all, both of you were hurt when you were 17 years old and, uh, you have had life-altering massive disability issues.
Not many would want to live like either of you!
And yet, I don’t know many people that want to live like either one of you, quite truthfully. What you guys, what you two ladies live with is extraordinary! Gracie’s 80+ surgeries that I can count, both legs gone, intractable pain. Joni, a quadriplegic, breast cancer, intractable pain. These are very difficult things to live with. Are there gonna be…one of the things that I saw is that people will be counseling folks like you all on the productivity of life, in spite of these things! Gracie, how does that feel to you? What resonates with you on this?
Well, for me, you know Joni and I experienced similar feelings when we were in the midst of the throes of the trauma that we experienced when we were 17 in the hospital for so long. And all of the things coming at us and destruction — it affected our lives at the, you know, I mean destruction comes to mind. I did the same thing that Joni did, including throw her book across the room when someone brought it to me (and she knows that, I’ve told her that, and I love her dearly and she’s forgiven me for that (laughs) I trust.
I wanted to die
But, um, I wanted to die and I mean I asked several of my friends, “Look, I can’t, I can’t, I can’t move. Everything — neck, back, my legs are in traction. Just give me something. Give me a razor blade. I don’t care what it is—I can’t live like this. I can’t live what they’re telling me I’m not going to walk. I’m never going to run again. I’m never going to have kids.” You know, I didn’t want to live.
What is the curriculum?
I want to know, is this curriculum, they’re saying and training, education and training, which is in the title of the bill, is that going to be things like Joni’s organization provides? Things that say, “Hey, there’s a community that can come beside you. There are people, there are people in churches—there are people in support groups that can say life is worth living. My life has purpose. No matter what that looks like. If it’s from a wheelchair (which mine is right now and Joni’s been now for over 50 years). You know, that’s where I’m coming from with it. Are you going to provide them hope — or are you going to provide them drugs to slowly, stealthily euthanize them? That’s my deal.
Gracie, I could not say it more eloquently than you just did because I think your problem and my problem when we were despairing of life was not our injuries (which were life-threatening) but our problem was depression. Discouragement. And you hit on the word perfectly…the word “hope.” And I want our friends to note this; you were talking about curriculum and education. The new language in this bill does not require hospice patients to be terminally ill to receive life-ending drugs—lethal doses of medication! And that is entirely new for our country!
This is what alarms both of us!
All of the rest of the physician-assisted suicide bills across the United States require a person to be terminally ill. But here, in this Senate Bill #693, you don’t have to be terminally ill to receive a lethal dose of medication. You could just be disabled! You could just be too old! You could be too depressed! This is what alarms the both of us who work against elder abuse and [work in] disability advocacy. We want to clear up that language. We want to make certain this bill does not pass. Let’s get rid of the fraud and waste and abuse in the Medicare system and in the federal hospice program before we pour, as Peter put it, good money after bad.
Well, I think that’s a, both of you said this. Joni, I want to ask you and I don’t know if I’ve ever asked you this question. Did you get to the point, like Gracie just said, where you were despairing of your own life? That you just said I just want to check out?
Oh my goodness, Peter, yes! Of course. When I was first injured, and even when I began suffering with chronic pain, you know, because when you’re dealing with stage 2 cancer, when you deal with quadriplegia every day, and then you got to face chronic pain every day that is never-ending and unrelenting, you wanna give up! You want to throw in the towel. You want to say that’s it! I can’t do this anymore! That is where the word…hope becomes so important.
I know, I know your faith is so…it just so anchors you. But when this all happened to you, your faith wasn’t…you know, you weren’t Joni Eareckson Tada back then. You were just a 17 year old girl who was incredibly scared and so forth and people came along and spoke words of life to you in that. Do I have that right?
Absolutely! I would beg my girlfriends to bring in their mothers’ sleeping pills, please bring in your fathers’ razors. We can do this secretly. No one will ever have to know that you helped me end my life. Just remember, I’m a quadriplegic; I can’t handle these things. I need help to end my life. And yet these wonderful people — God bless them — refused to listen to my despairing requests! But they spoke words of hope into my life and they said to me, “Joni, you may not be able to do quadriplegia. You may not even be able to do chronic pain. But you can do all things through Jesus Christ who can strengthen you. Will you let turn to him, will you trust him in this and enable him to allow you to persevere and endure?”
Glad to be living!
And Peter, I’m just so glad I’m living! Oh my goodness, I just turned 69 years old! 51 years in this wheelchair. And I celebrate life! I know the future’s not going to be easy. I know as I age the encroachments of pain and disability will worsen. But I’ve got to trust my God with the future! Besides, we already have good laws on the books here in the United States which allow people like me to die with dignity, without a drug abuse of sorts…or anything that is anti-life! We already have good laws which enable people like me to plan our future and how we want to be treated, what we might like to have for treatment, and what we might not like to have for treatment. We can make choices. So, let’s not despair of the future! As Gracie said a moment ago, let’s have hope!
Well…those are beautiful words. I think that’s the message we’d all like to hear is available to anybody — 17 year old girls who had a spinal cord accident or car wreck like yours or Gracie’s or people who are 89 years old facing Parkinson’s or Alzheimer’s or whatever. It doesn’t matter. Those are the word of life…beautiful words…wonderful words…wonderful words of life. And I appreciate both of you.
Joni, I’m going to let Gracie have the last word. But I’ve got to tell you, Joni, I’ve got to get you back to Nashville because we had to cancel…you got sick and then the Billy Graham funeral and so forth. Then we had a dinner for you. And you gotta come back ‘cause they’re all waiting at the table and the food’s getting cold! I’m ready for you to come to Nashville and have this dinner with us and we’ll look forward to that time.
Gracie, last word on that. We’ve got about a minute…actually less than a minute, Gracie…30 seconds. Just what Joni said, just echo your heart.
Oh my goodness! I mean we can do all things through Christ who strengthens us and if it’s taking one minute at a time, five minutes at a time. You know one of the best things and it’s not real spiritual but that I was told, you know, by my beloved this is a blip on the radar screen of life, okay? So let’s not get caught up in this right now because there will be a respite. Now whether that means a little less pain so you can make it through the next 30 minutes or an hour or the day or whatever that is but there is hope!
Peter discussing Standing With Hope
(music – ”Because He Lives,” words and music by Bill and Gloria Gaither)
Welcome back to the show for caregivers, about caregivers, hosted by a caregiver. I am Peter Rosenberger bringing you three decades of experience to help you stay strong and healthy as you take care of someone who is not and we can do that because He does live!
Because HE Lives
That, that song, I wish I could play the whole song for you. I may have to do that one day. That is my wife, Gracie and Joni Eareckson Tada. You can get that on iTunes. You can go out on to our website standingwithhope.com and listen to that. It is spectacular! I’m going to put that interview with Joni and Gracie out on our podcast a little bit later on. Gracie, I’m going to let you have the last word here. You and Joni just gave a great interview and I’m going to put it out there.
John (show producer)
We should remind about that senate bill, too!
Oh, yeah! 693. Bill 693. I’ll put all this out there on the podcast. You’ll be able to find it. You know, Gracie, I love what you said there that you had those moments. And you know, I didn’t know you when you first got hurt, so I—
Yeah, a lot of people think that, but no…we did not. (laughs)
(laughs) Thank you for that clarification, darling. You know, I didn’t know you when you got hurt—I didn’t know that despair. I’ve seen you at other despairing moments—I’ve caused other despairing moments. But during that initial time of that wreck when you’re thinking you’re 17 years old and you wake up and your whole body is broken. At one time, a resident once told us that you had 200 breaks from this car wreck, just a devastating car wreck. And there’s no way you thought you could ever live like this. So I hurt when I hear those things of you being 17, 18 years old and you’re begging friends for a razor blade or sleeping pills to be able to just check out.
Look at the life you live!
Look at the life that you’ve lived! You’ve lived to see your grandchildren! And people are walking in Ghana because of you! People are walking in Nigeria because of you. People are getting hope from this show because you lived. And you’ve understood that life is so important. Last words…
One of the songs… Friends surrounded Joni. And you know, friends surrounded me from Belmont University here in Nashville. They came every day faithfully. Those friends are the ones that started saying, “Hey, nu-huh! No, nu-huh! You don’t get to think like that.” It didn’t matter how mad I got. I was angry at God. I was angry at everybody. But you know what? They were relentless. They were relentless in coming to see me. They were relentless in not letting me check out.
This song’s for you
One of Joni’s favorite songs is the Elton John song, “This Song’s for You” (I think that’s the title) [editor’s note: “This One’s for You”]. “I know it’s not much, but my gift is my song and this one’s for you. And you can tell everybody this song’s for you.” He would get up underneath her Stryker frame so she could see him with his guitar and play that to her. And, you know, it’s people, it’s when the community and your friends—
They do. And Gracie, we’re out of time, darling. So this one’s for you, darling. You know, let’s speak life to each other. That’s the whole point of this show today: speak life to each other. We’re going to put this out on the website, the podcast caregiverpodcast.com. All of this is going to be out there. Standingwithhope.com. This is what we’re about here. Thank you for being a part of this and we’ll see you next week.