Are you ready?
After a long hiatus of writing, I am back. It's interesting how my brain works and how my life works and when you add 55 years to the mix, it is almost scary. I haven't taken the time to sit and think for a few years now as change has been the name of the game! From aging and chronic illness, to graduations, to peace corp volunteers, to job changes, to unemployment, to more graduations, to immigration filings, to marriages, to even more graduations, to empty nesters, to married adults in my basement, to jobs at home depot and finally to a road trip to Michigan to send my last off to adulthood at a new job! Just writing that list is exhausting and that doesn't even match the amount of emotion that has gone on with all of it.
I was lying in my bed sick for two days last week when I felt the familiar tap on the shoulder that I have every now and then my friend "the holy spirit". I ignore the taps and sometimes they go away. If they continue I have no choice but to listen.
All of a sudden, I am hearing those voices in my head that I used to hear when I blogged before. I used to call it "ideas" rattling and they would rattle around until I put them down on paper. Well, those pesky voices are back and just on a whim, I sat and began to read my old blog entries and knew it was time to begin again.
Bear with me because I am really rusty but I need to get these thoughts down...
I'm a Nurse Manager at the company that I have worked at ever since I went back to home health and hospice nursing in 2008. I have the most compassionate, hard working and big hearted nurses that are trying to balance life, kids, husbands, and demands their job while caring for and loving our hospice patients out of here. Oh, and I forgot, they are patient advocates to the "nth" degree. They are not going to "convince" anyone to choose hospice over another choice even if hospice is one choice or no choice at the time. Sometimes they won't even talk about end of life/hospice care with a patient that has no other options for treatment because, "they're just not ready"...
When they come back to the office and say that, I find myself launching into a diatribe many times....
Not to be disrespectful to anyone, but as I have navigated the hospice landscape (doesn't that sound like a manager?) for many years and feel so passionate about folks knowing all the choices, the concept of "just not ready" for hospice... makes me speak up. As a nurse in this field, it is not my job to convince anyone of anything but my duty to educate on all options for care that is available to folks at such a precious time. Here's why I think like this after my last couple of years...
I wasn't ready for my youngest son to leave the nest and go to Michigan from Colorado to work when there are perfectly fine jobs here and he could be close to the family. Even if I wasn't ready, it happened. Do I wish he was still close? I absolutely do... but the plan was for him to leave us and spread his wings.
I wasn't ready when my daughter left for the Peace Corps and then came home in love with a gentleman she met in Peru who needed to go through immigration and doesn't speak English. "Slow down, give it some time" I said. Time was not on their side with immigration. So while, not life and death, even if I wasn't ready, they are married and making quite a life for themselves.
And the final example of the biggest "I'm not ready" was when my husband was phased out of his job after 30 years and had difficulty getting another so he went back to college and got his degree. Then I was even more "less ready" when he finished and interviewed and after many interviews, he is "too qualified" and which means "too old" (and he'll tell you he is good and old) and we learned that our option is to keep moving forward living the life placed in front of you with as much joy and time spent with our loves.
So back to "I'm not ready" for those folks going through treatment and feeling like the have to keep going or they will die. No one is ready to die, right? If you've been told you have a terminal disease, it may be difficult to wake up but you do and you navigate your symptoms and feelings and treatment. I would guess you worry and feel pretty powerless at times. You know your treatment plan and you take it a day at a time and come through. It is not easy but you would not choose anything else. You had all the options and you made your choice. To you I pray for easy treatment and total healing!
I guess this next paragraph is to talk about choices for those that are not ready but are not offered all the options...
Hospice care is another option and not only when there are no others. Hospice care is not the choice of giving in. It is more of the choice of honoring the precious time that is given to you. It is honoring the time and making it "good" time or at least the best time you have with your loves when "you" decide that you can't take another minute of treatment or your doctor offers no other options.
Look at it this way: You can have 10 days of time sitting in a chemo chair talking to the pretty nurses with your wife sitting by you. Then she can drive you home and you can sit in you chair at home or get in bed and sleep until you wake up to throw up. Maybe you tolerate the chemo and you don't throw up but you fatigue and sleep many days straight after the treatment. Before you know it, your food is tasting metallic and your wife is waking you up to eat and you just want to stay in bed and sleep. Finally it wears off some and you plan your good days around MD appointments, blood draws, and tests to see if treatment is working. So you and your wife get on the roller coaster and go see Dr. So-n-so and he tells you that it is not working but there is a trial and you have can't eat this and that, and you'll have stop taking the pain meds that you are needing to stay "somewhat comfortable" and in a few weeks we will know if you qualify after more blood tests and scans. He thinks you will but can't be sure... and if so, he thinks it will buy you some time. So you go home and your really thinking your are so tired of all this but you and your wife decide to participate. You have your plan and I honor that but you still have another option that wasn't offered.
What if they offer hospice as a choice? Say you choose hospice because you can't stand the chemo or to go the the hospital one more time and while you aren't having treatment, you want to spend time at home and you want to see if there is a better way. So the "hospice people" call and schedule and your nurse shows up and begins to ask you questions about your journey, you pain, your sleep, your appetite and how your wife is holding up. She asks you what and who you love and then poses the question, "how do we figure out how to get you to spend your time the way you want to?". You answer and she talks about medications that are different for pain and how if they don't work, after a few days, we change them and we don't stop until we have found the right one so pain is not the first thing you feel every morning. Then, you ask how this is going to work and she asks you how you want it to work, and what your priories are. She says she will report on all the things she sees...the good, the bad, and the ugly. All of a sudden, while you know the end is not going to change, maybe the journey to the end will be better than it has been. You will be able to ask all the questions and get an answer and if there is none, you will know that. The nurse puts you at ease knowing you can call day or night for help and so can your family. All of a sudden you sense you have a small bit of your control back and maybe you will will be able to find the right drug to keep you comfortable so you can go fishing, hang with your kids, or do some of the things you haven't been able to because of your pain. You start feel some hope after a long dry season of battles and little hope.
It's about good time...and everyone has a different definition and different ways to spend our time. It's about knowing when enough feels like enough but you feel like there is no where to turn, there is a soft place to land. It about knowing the goals have changed from cure to symptom control, good time, comfort and your loves. And that too is a choice to be thought about when you and only you decide. But you have to have the information.
That's why after all these years of loving and caring for people at the end of life, my passion has not waned...
May you never have to make a choice you aren't ready for,
May you have an abundance of time with your loves,
And may that time always be good and peaceful!
We'll tawk tomorrow,
I love you all!
Love,
Terry
I was lying in my bed sick for two days last week when I felt the familiar tap on the shoulder that I have every now and then my friend "the holy spirit". I ignore the taps and sometimes they go away. If they continue I have no choice but to listen.
All of a sudden, I am hearing those voices in my head that I used to hear when I blogged before. I used to call it "ideas" rattling and they would rattle around until I put them down on paper. Well, those pesky voices are back and just on a whim, I sat and began to read my old blog entries and knew it was time to begin again.
Bear with me because I am really rusty but I need to get these thoughts down...
I'm a Nurse Manager at the company that I have worked at ever since I went back to home health and hospice nursing in 2008. I have the most compassionate, hard working and big hearted nurses that are trying to balance life, kids, husbands, and demands their job while caring for and loving our hospice patients out of here. Oh, and I forgot, they are patient advocates to the "nth" degree. They are not going to "convince" anyone to choose hospice over another choice even if hospice is one choice or no choice at the time. Sometimes they won't even talk about end of life/hospice care with a patient that has no other options for treatment because, "they're just not ready"...
When they come back to the office and say that, I find myself launching into a diatribe many times....
Not to be disrespectful to anyone, but as I have navigated the hospice landscape (doesn't that sound like a manager?) for many years and feel so passionate about folks knowing all the choices, the concept of "just not ready" for hospice... makes me speak up. As a nurse in this field, it is not my job to convince anyone of anything but my duty to educate on all options for care that is available to folks at such a precious time. Here's why I think like this after my last couple of years...
I wasn't ready for my youngest son to leave the nest and go to Michigan from Colorado to work when there are perfectly fine jobs here and he could be close to the family. Even if I wasn't ready, it happened. Do I wish he was still close? I absolutely do... but the plan was for him to leave us and spread his wings.
I wasn't ready when my daughter left for the Peace Corps and then came home in love with a gentleman she met in Peru who needed to go through immigration and doesn't speak English. "Slow down, give it some time" I said. Time was not on their side with immigration. So while, not life and death, even if I wasn't ready, they are married and making quite a life for themselves.
And the final example of the biggest "I'm not ready" was when my husband was phased out of his job after 30 years and had difficulty getting another so he went back to college and got his degree. Then I was even more "less ready" when he finished and interviewed and after many interviews, he is "too qualified" and which means "too old" (and he'll tell you he is good and old) and we learned that our option is to keep moving forward living the life placed in front of you with as much joy and time spent with our loves.
So back to "I'm not ready" for those folks going through treatment and feeling like the have to keep going or they will die. No one is ready to die, right? If you've been told you have a terminal disease, it may be difficult to wake up but you do and you navigate your symptoms and feelings and treatment. I would guess you worry and feel pretty powerless at times. You know your treatment plan and you take it a day at a time and come through. It is not easy but you would not choose anything else. You had all the options and you made your choice. To you I pray for easy treatment and total healing!
I guess this next paragraph is to talk about choices for those that are not ready but are not offered all the options...
Hospice care is another option and not only when there are no others. Hospice care is not the choice of giving in. It is more of the choice of honoring the precious time that is given to you. It is honoring the time and making it "good" time or at least the best time you have with your loves when "you" decide that you can't take another minute of treatment or your doctor offers no other options.
Look at it this way: You can have 10 days of time sitting in a chemo chair talking to the pretty nurses with your wife sitting by you. Then she can drive you home and you can sit in you chair at home or get in bed and sleep until you wake up to throw up. Maybe you tolerate the chemo and you don't throw up but you fatigue and sleep many days straight after the treatment. Before you know it, your food is tasting metallic and your wife is waking you up to eat and you just want to stay in bed and sleep. Finally it wears off some and you plan your good days around MD appointments, blood draws, and tests to see if treatment is working. So you and your wife get on the roller coaster and go see Dr. So-n-so and he tells you that it is not working but there is a trial and you have can't eat this and that, and you'll have stop taking the pain meds that you are needing to stay "somewhat comfortable" and in a few weeks we will know if you qualify after more blood tests and scans. He thinks you will but can't be sure... and if so, he thinks it will buy you some time. So you go home and your really thinking your are so tired of all this but you and your wife decide to participate. You have your plan and I honor that but you still have another option that wasn't offered.
What if they offer hospice as a choice? Say you choose hospice because you can't stand the chemo or to go the the hospital one more time and while you aren't having treatment, you want to spend time at home and you want to see if there is a better way. So the "hospice people" call and schedule and your nurse shows up and begins to ask you questions about your journey, you pain, your sleep, your appetite and how your wife is holding up. She asks you what and who you love and then poses the question, "how do we figure out how to get you to spend your time the way you want to?". You answer and she talks about medications that are different for pain and how if they don't work, after a few days, we change them and we don't stop until we have found the right one so pain is not the first thing you feel every morning. Then, you ask how this is going to work and she asks you how you want it to work, and what your priories are. She says she will report on all the things she sees...the good, the bad, and the ugly. All of a sudden, while you know the end is not going to change, maybe the journey to the end will be better than it has been. You will be able to ask all the questions and get an answer and if there is none, you will know that. The nurse puts you at ease knowing you can call day or night for help and so can your family. All of a sudden you sense you have a small bit of your control back and maybe you will will be able to find the right drug to keep you comfortable so you can go fishing, hang with your kids, or do some of the things you haven't been able to because of your pain. You start feel some hope after a long dry season of battles and little hope.
It's about good time...and everyone has a different definition and different ways to spend our time. It's about knowing when enough feels like enough but you feel like there is no where to turn, there is a soft place to land. It about knowing the goals have changed from cure to symptom control, good time, comfort and your loves. And that too is a choice to be thought about when you and only you decide. But you have to have the information.
That's why after all these years of loving and caring for people at the end of life, my passion has not waned...
May you never have to make a choice you aren't ready for,
May you have an abundance of time with your loves,
And may that time always be good and peaceful!
We'll tawk tomorrow,
I love you all!
Love,
Terry
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