We've all experienced the need to change at some point in our lives and understand that it can bring about a host of emotions and some fear of the unknown. While at times, this can be something exciting, when on an end of life journey, this can seem difficult, overwhelming and just plain impossible. In this episode, Mitch discusses how to take control of your Hospice journey and have the courage to make it better if something is not suited to you. As the famous Singer/Songwriter Sheryl Crow tells us, and Mitch affirms in this episode, sometimes "A Change Would Do You Good."
"It's even okay to change our minds about our hospice agency to something that's more suitable to you. It's okay to change our minds about hospice in general. Nowhere is it written that once you're on hospice, you have to stay there."
Transcript:
Have you ever had your mind made up and proceed with your plan, and then after a while, you come to the conclusion that this just isn't working out? Certainly not like I thought it would, and I need to make a change. If we're honest, this happens to everyone, and it certainly happens to those who are facing an end of life situation.
Hello, I'm Mitch Ware, and I'm your host today for another seven minutes scoop from Living With Hospice. As we live life, things change. As life changes, our perspectives change or needs change. And that still holds true during an end of life journey, it's okay for us to come to the realization that we might have made a mistake, we might have made a bad choice, we might have made a bad judgment, and we need to change directions.
In an end of life situation, there are so many things going on doctors and nurses and treatments and do we do a clinical trials or we don't? And we've got to travel? And how are we going to get there? And where are we going to stay? And of course, there's always the poking and prodding and wires and needles and all of that stuff. We get overwhelmed. And our thought process to discern what's best for us gets shut down. We just do what we're told and we hope for the best. We endure the situation.
Let me tell you, it's okay to stand up for yourself. Or if you're a caregiver, stand up for your loved one, make a change? Nowhere is it written that you have to settle for the status quo. NOWHERE! You have full control of who you see, doctor wise, and what treatments you want and how you want to be treated. It really is okay to change our minds about who's going to be our doctor. It's okay to change our minds about our nurses, and change nurses or nurses aides.
I had a patient who only wanted her whole family present when she passed, and then changed her mind and only wanted her hubby. And it's okay to change your mind. I had another patient who changed her mind about dying at home. She wanted to die in a facility after she tried being home and saw that it was just too much of a burden on her family. You know, many people on an in home hospice burnout. The caregivers, the family, their friends, and so it's not uncommon for that to happen.
It's even okay to change our minds about our hospice agency to something that's more suitable to you. It's okay to change our minds about hospice in general. Nowhere is it written that once you're on hospice, you have to stay there. Patients and in some cases, their caregivers, are in the driver's seat. Not the doctors. Not the nurses. Not the administrators. Not the chaplains. Patients and their families are in charge. You have the last say. Many doctors and agencies don't want him to know that, but it is true.
After all, remember signing all the paperwork? Look into fine print, they need your permission to do the things that they're going to do. Once someone hears a terminal diagnosis, it's like their mind just fixes on that word "terminal". Everything else after that is lost in the fog. We don't hear what's being told to us and we sure don't remember what we heard. Truth be told most of us are in that sense of panic at that moment and the doctors tell us what we need to move forward. They offer suggestions and different types of care. Most will suggest to hospice care if that's a terminal prognosis, they usually do so in the form of "I'm sorry, there's nothing else we can do for your loved one medically, I suggest hospice."
So listen, listen to this, we get into line, we do what we're told and because we're in a panic mode, and what I call the 11th hour fog, it's a mental fog we're in when we hear this terminal prognosis, we're not very receptive to anything else being told to us or shown to us. And we may make decisions based on what the doctor says, or the nurse says, or our best friend says, without really thinking it through, and it happens all the time, then we find ourselves in a situation that's really not what we envisioned or wanted. And that's okay. Because it's okay to change things.
It's okay to find the things that are a better fit for us. And that includes doctors, it includes hospice agencies Sometimes people are so concerned about other's feelings that they don't want to ruffle any feathers or make any bad feelings. Someone suggested this, or they suggested that or you followed the recommendation here or there. And then he discovered oops, that was a bad idea. Well, don't be afraid to make a change!
I had a patient with a big family. They attended a big traditional church and were deeply involved there. And when she was transitioned over hospice care from curative care, her family began talking about a big formal traditional church funeral. They share their ideas with her and the normally quiet and somewhat reserved woman conjured up the courage to say no. "No, that's your idea of a great funeral. Here's mine." Her vision for the funeral was that she wanted it to be a Hawaiian theme. She wanted people to wear fun Hawaiian shirts and attire, and she wanted the women to have big orchids in their hair. And everyone would receive a Hawaiian lei when they arrived at the church. She embraced the aloha spirit, which in Hawaii is a really big thing. It's each person must think and emote good feelings towards others. It's all about joy, not sorrow. It's about Thanksgiving and gratefulness.
But you know, we would rather suffer, sometimes, some of us, than create conflict, or in our own minds a problem. So we just settle for what we're told is going to happen. We need to have the courage to make a change.
As we wrap this episode up, remember, you are in the driver's seat, your needs and that of your family come first. If you don't like something, then make a change. Do something that is more suitable. Find a better fit for you. You'll be glad you did.
Thank you for giving this episode a listen. Please share our podcast with your friends. They can find us anywhere they get their podcasts. If you have a particular question or comment that you would like to make and maybe have addressed here in a future episode, please send it to us. You can find us at www.livewithhospice.com. We really appreciate and enjoy hearing from our listeners. Until next time, this is Mitch Ware with another living with hospice. Seven Minute Scoop