In this three part series, Mitch discusses the experience and emotions associated with being told that a disease is no longer treatable from different perspectives. In part one of this series, we look at how this news impacts the patient and the fear associated with such a prognosis. Mitch provides suggestions and love on how to address this fear, as well as to how to help other loved ones during this time.
"We don't want to be living in fear. We don't want those around us to be living in fear. We want every one and to be open and transparent with their feelings. We are all going through the grieving process and are all entitled to those feelings..."
What separates us from the rest of the animal kingdom is our acute ability to reason to think on a high level, to imagine, to ponder. And to worry.
As many of you know, there are certain things that you never get over. Things that change you, and change your world, forever. Losing a job, losing a house, having a fire, losing a loved one, a flood that takes out a whole neighborhood, or tornado or hurricane. All of these things can be life altering.
We live in fear of loss. Loss is often painful. It certainly was for me. We lost a part of our house in a tornado. We lost our parents to disease. We lost our oldest son to cancer when he was only 28 years old. That was 15 years ago, but his entire 39 month journey and of course, his transition are still very vivid in our memory. When preparing for this episode, I relived the events of his journey and revisited those emotions and feelings of loss. The good news is that I've learned how to better manage my feelings, and I'm going to share that with you.
In this episode. Welcome to another episode of Living with Hospice. I'm your host, Mitch Ware and today we're going to talk about hearing those horrible words. "The disease is now untreatable." A terminal prognosis hits us like a ton of bricks. It's like a kick in the gut. Life stops. Our thinking races, panic and anxiety sets in. This news not only impacts the patient, but the patient's family, and their circle of friends and even co- workers. Everyone in that community has a life changing experience when someone gets a terminal prognosis.
This topic is so huge that we're going to cover it in three separate episodes from three separate perspectives. The first will be accepting the prognosis from a patient's point of view or patient's perspective. The second episode will be accepting the prognosis from a primary caregivers perspective. And finally, the third and final episode, we'll be accepting the prognosis from the rest of the family and friends perspective. You know, there are people in your circle who want to do something, but they don't know what to do. They don't know how to feel. They're going through an angst or anxiety just like you are. So each episode is going to be tailored to one of those specific topics.
First, let's look at it from the patient's perspective. Now, most of us have thought about our own mortality at some time or another. Some of us think we will live forever. Especially young people. I know I did, I thought I was bulletproof. Until people around me, when I was in college, all died of cancer. It was at that point where I didn't think I was going to live to be beyond 30 years old. And I lived in fear. Most of us really don't know and don't really want to know or even think about our mortality.
When people get a terminal prognosis they feel panic. Most of us feel overwhelmed with sadness. Some people go right to anger, angry at the world, angry at God, angry at everything, and a big case of the "why me's?" Yet, I have seen lots of people that have adopted a sense of surrender and acceptance, and believe it or not, some feel a sense of relief. It's like they knew this was coming. They knew something was wrong, and they're okay, they're ready for this next chapter in their life.
These are all in part, some of the five steps of what is called the grief cycle. These feelings and these sorts of reactions are very normal, very common, and it comes on immediately upon hearing the prognosis. Whether you're the patient or caregiver, or a friend, maybe just an acquaintance, we all start that grieving process as soon as we hear the prognosis. We all handle it a little bit differently.
If you're like many, you just want to go hide. So we hide in our jobs. We hide in our hobbies. We hide in our thoughts of anything but this. We hide in a day to day routine. Sometimes we just go hide in our bed under the covers, hoping that this is just a bad dream will all go away. Some people get really angry, as I mentioned, and they want to fight others. A lot of people go into the "why me's", bargaining that they've lived a good life. They've never hurt anybody - not intentionally. They even go to church, they tithe on Sunday. They are a good person. There are people that put on their armor, pick up their sword, and are ready to fight the disease with all they have.
Which of these are you? The best defense is a good offense, take a few moments to think about this. Once you get the initial news and you have time to process some of it, all of us settle into a perspective of what's happening, or at least our own perception of what's happening to us in our lives. Then we decide if we want to prepare for the inevitable including looking after our loved ones, or just slipping to an ignoring the whole thing and in living as if it weren't true. That's called denial and it's a step of the grieving process. I know people like this, you probably do too. People who are just so terrified about dying, that they won't talk about it and they won't allow anyone else to talk about it. They won't allow anyone to help them prepare for it and they go about their life as if well, everything's fine. Everyone around them, pretend everything's fine. Everyone puts on a nice happy face. And sadly, that usually ends up in one hot mess. For the patient, it means less comfort. It means living in fear with that thought in the back of your mind that you're dying, but you haven't been able to deal with it, because you don't want to talk about it snd you don't want the people around you to talk about it. So, it sits back there and it festers and grows and grows and grows kind of like a volcano that's building up all of this energy, and all of this power, it's about ready to just explode. That's what happens when we suppress these types of significant feelings. You have a crappy quality of life. Pardon my French.
I had family that did that. I was young when I experienced this. I was so conflicted. Because on one hand, those of us that that have a faith and we have security in an afterlife, why are we walking on eggshells? Why are we not talking about this? And sadly, I was young and I accidentally found out what was going on. I asked everybody why are we not talking about this? Our family member was very ill. But my uncle was understanding. He told me, "Yeah, it's okay, Mitch, he knew he wasn't long for this world. But his family around him, felt that he shouldn't know the specifics." They didn't want to talk about it because it was too hurtful for them. Well, that's a selfish perspective but that's what happens.
So from the patient's perspective, they're trying to fit in, or at least my uncle was trying to fit into this lifestyle, this way of living in denial to keep everybody else happy. And you know what? He was miserable. As a person who's just heard that they're going to pass away sooner than they wanted, how do you cope with family and friends and all that dysfunctionality? Here's the bottom line. You say, let's talk about this. And they say, I don't want to talk about it. It's too hurtful. I can't imagine life without you. And you say - well, get over yourself and let's talk about it.
Many of us are not going to be able to speak in our last hours. It's important to have conversations early on. It's important to kick the doors open if you have to, to communicate and talk about these things to encourage the grieving process. Not to overemphasize things either, but to stay within reality to keep a perspective that this is part of life and this is going to happen whether I want it to or not.
So how do you come to a sense of acceptance? If this is you, they just told you that you are dying. All you can think of is pain, suffering and misery. You may experience that people start to cry when they see you and hear the news. Talk about a buzzkill! Or people don't come around. Maybe you're still able to go to church or to go out to eat and when people you know see you, they walk the other way. Good Lord, talk about hurtful.
At that point, you can do one of a couple things: you can ignore it, you can retreat, or you can go on the offense, and seek them out and say, "Hey, I know this is painful for you to hear. I can see in your face that you know, I want you to know that I'm okay. And I value our friendship. And if you ever want to talk, let's talk." People don't expect that to happen, but you know what? 9 out of 10 times those people will come back to you and they will want to talk. You've not only helped their life journey get better, but you've helped yourself, because you are now engaging with these friends again. One way to gain acceptance of this on a personal level is to get organized, make sure that all of your friends and family know what's going on, and they know it's okay to talk about it. After the talk about it initially, then they're at ease and they're gonna start talking about other things - baseball, the Detroit Tigers or the Lions, of course, we're Michigan, that's what came to mind. Or the Dodgers and the Yankees or, or whatever it's going on what book have you read lately. All these other topics will come out because the elephant in the room has been exposed and dealt with.
What I recommend you do then is begin to think about the next few months journey, what are you going to be able to do and what you want to do. Make a list, then recommend that through whatever process fits your particular situation, select a partner a buddy to journey with, as well as a primary caregiver. If they're one in the same, that's okay too. This can be your spouse, it could be your best friend, it could be any you know, whoever you want, get a buddy that can go on this journey with you. Once you have this part in place, you're gonna have this sense of comfort, you're going to know that you're loved and you're cared for, and things are almost under control. I get it. Some people don't have either of these in their journey, and that sadly, regrettable, but more often than not, because they don't know they need it. If that's you, contact your hospice agency or find a volunteer to partner with you. They are there. Believe me, there's 1000s across America, that are willing to do that. Volunteers, people your age people, younger people, older -whatever you want - people that will come out and be your friendly visitor and become a friend of yours. There are also volunteers that are willing to come in and help out with caregiving. And there are also volunteers that will come out and do all sorts of things like, read to you or, or make music for you, or bring therapy dogs, etc. Check with your hospice agency and set up this routine for visitation for engaging with others.
We, as a society, especially Western society, have a fear of death that stems from the unknown. We, as citizens of the 2000s, have preconceived notions given to us from TV, movies, radio, internet, video games, all these things, that passing away is really like something from a Western or, or some kind of horror movie or whatever. And of course, nothing could be further from the truth. We have an episode- I think it's number 19 -about what is dying like. We won't take time now to explain it, but it's not anything like you see in the movies or TV. It's a very positive thing, believe it or not, and can be a blessing for even those who are standing around observing friends and family. So check that out.
To recap - we want to be organized. We don't want to be living in fear. We don't want those around us to be living in fear. We want every one and to be open and transparent with their feelings. We are all going through the grieving process and are all entitled to those feelings, all five steps or depending on which model, you look at seven steps. It's all of these different things, finally getting up to acceptance. The only way that happens is if we have open communication that's written, that's verbal, it's nonverbal body language, it's okay to engage our friends and relatives in ways that perhaps we never have before or haven't since we were kids. And do this early on in this journey. Don't wait. Because you don't know what's going to happen. And you might not be able to communicate least not verbally. So get these conversations out. Make sure everybody knows what's going on. Allow your caregivers to get organized to meet your needs. Do not be too prideful, to the point where you're afraid to call hospice and get help with organizing, getting all of your affairs in order, not just your will and that sort of thing. Build routines with your caregivers and your friends to make sure that you have the best possible rest of your life that you can. Dig out the bucket list, find a partner, go do things, jump out of an airplane, go scuba diving, whatever you're able to do, go do it. One of the biggest regrets of my life, is my father refused to take my mom to "Holy Land" because he didn't think they could afford it. Don't be like him. Go ahead and do these things. Now. Forgive and allow people to forgive you. Be gracious, accept their forgiveness. You'll be amazed at the improvement and your quality of life.
More simply put, as a person with a terminal prognosis, seize the moment, open up, open your mind, open your heart, kick the door down on closed communication. Be transparent. Share your feelings with those around you, and give them permission to share theirs with you, even if you have to pull it out of them. Do so. And what you're going to discover is that you have a wonderful quality of life for the rest of your life and those around you will be blessed because they're no longer functioning in fear. Down the road years from now, when they think back on this journey, they're going to remember all the positive breakthroughs that you had at this part of your journey of life, your feelings, give your friends permission to do so as well. Get organized. Find someone that you can share your innermost feelings with, hopefully someone who is close to you and is around you a lot. Encourage them to share their feelings with you become buddies on this journey. Formulate a bucket list. If you don't already have one thing go do those things. Go out, be with people. Be in nature take time, as they say to see the small things to smell the roses. They're there. Look at all the miracles around you. The little things that happen every single day around you. Allow that quality of life to come in to your life. Join places like Gildas Club where there are others on a very similar journey as yours that you can network with you can cry with, you can laugh with. Don't wait to engage your loved ones and friends. Do this at the beginning of your journey. That way you assure yourself of having as positive of an experience and have the best rest of your life that you can.
t's a choice for you to make. You can choose to do nothing or you can choose to take charge of your life. Live the best possible life you can bring others into it. Have transparency, live life. If you've enjoyed this episode, we'd like to hear about it. Drop us a note whether you have a comment, maybe a question, or you just want to share with us your situation you can reach us at www.livewithhospice.com. We love to get your communication. We read every single one and who knows you may hear an answer to a question or your comment in a further episode. Next episode is going to be part two in this series, hearing the terminal prognosis from a caregivers perspective. We look forward to visiting with you then. It's been a pleasure. My name is Mitch Ware and this is living with hospice. Have a blessed day.