A caregivers journey is tough at best!
LilChemoSmoker
Member Posts: 185
Hello to all! For those of you that see my 'new' arrival to the board, I am Eric's (chemosmoker) wife. I have lurked the halls here ever since my husband joined several months ago now. I am typically a "people watcher" and only speak up when I have something of value to add to the thread, and please know that I am well aware that I see through my own lenses in this life and my opinions and viewpoints are my own. I do not wish to 'influence' others that have made their choices, nor do I wish to 'change' someones mind. I choose to come forward at this point with words of encouragement and possibly some words of insight that may help someone who is struggling to see things clearly. I am aware that there is a "caregivers" thread on CSN and will post this there as well.
I am a primary caregiver and support for my husband. My job is to carry out his wishes for his life decisions, when he is incapable or so desires my aide. Whether I 'agree' or 'disagree' with his choices makes no difference in his care as this is his life and he so gracefully and joyfully chose ME to share his life and I chose HIM. This choice alone defined our journey ahead because with this choice was an awareness that it is with each other that we feel safe from all of life's threats. When we married our catch phrase was and still is "bring it on" as we decided to walk through life with a willingness to stand in the gap for one another when need be. I "got his back" and he has mine. Though my husband is terminal (we are all terminal in time) the empowerment of our togetherness has given me the strength and courage to 'know' that even after he has left this place, he has my back. It doesn't take much in the face of trauma to lose all sense of safety and comfort. In the face of trauma we all run on "auto-pilot". But if you have a strong foundation to stand on, even auto-pilot can be met with grace and dignity.
I have read several posts in this forum that have (by my perception)represented a people that are walking in the face of fear and exhibit feelings of abandonment or at the very least the fear of abandonment. I can not presume to know the inner-workings or dynamics of each situation, though I can as a human being have great sympathy and compassion for those that show up looking like a deer caught in headlights. I come forward at this time to speak about my approach. That is one of a caregiver that is committed to being the helpmate giving inspiration to my husband to walk through this storm of cancer with dignity, respect, and most of all empowerment of choice. There is not much in this life that we can truly control, and when given the news that you are terminal or your chances of survival are threatened, our core is rattled and we need to be empowered with control over our choices. This is no small sacrifice to make as a caregiver, though one of the toughest tasks to carry out. We are overwhelmed with fear of the unknown and grasp everything we can to retain our sense of control. This is not helpful to the ones we care for. I came across an article that I would like to share here that may lend some helpful information to anyone reading it.
I want to thank any of you who have chosen to read this post and understand that I am just one in this circle of hope and I too care about the outcome for each and every one of us. With each and every one of you participating in this forum, you have brought forward a sense of community and togetherness, which is very needed in times like these. May god bless each and everyone you with the power to sustain and walk through this storm and to reach the other side with a sense of empowerment.
Take care,
Michelle
__________________________________________________________________________________________
At Home With Terminal Illness
By Michael Appleton M.D.
Control
Behavior and control sometimes influences a person with a terminal illness. They may keep precise lists of their medications and activities, expect caregivers to be punctual and be generally demanding to all of those around them. It's the patient's need for control---or at least the illusion of control---that drives this behavior. People who were insecure and demanding and needed a rigid structure to their lives before their illness are often even more so when faced with dying.
For many people, dying is frightening. We lose much of the control we had in life. We can't do the things we want to do. We become frustrated and in time, may have to place our lives into the care of someone else.
And it is in these times, that both patient and caregivers attempt to exert influence over events that seems disorderly and unmanageable. Patients can appear fussy, unreasonable, and easily irritated when things are in disarray.
Try to understand the fear of losing control that underlies such behavior. Talk about these issues with the patient, or at least bring them up and make an effort to discuss them. It's helpful to allow and encourage as many activities as possible that will give the patient a sense of purpose and structure, and let them hold power over their fate.
When people are sick, particularly our loved ones, it's natural for us to want to do things for them to help make life easier. In doing so, we can contribute to their feelings of powerlessness and loss of control. Empowering people contributes to their sense of self-worth as human beings.
Remember: Enabling patients to retain control is empowering and healing.
Denial
Denial is our emotional buffer. It's an unconscious mechanism that cushions us against the painful events in our life. It's a way we can feel safe from threats to our survival. Some people are able to accept slowly the seriousness of their illness. Others can't seem to accept their dying, and will ignore facts as caregivers and physicians present them, or change the subject. Some patients may accept, to some degree, their impending death, but they can't clearly explain how they feel. Denial may also help some patients [and caregivers] get "over the hump" and through the worst part of what's happening.
Because denial allows us to maintain a feeling of safety, don't "break down" or challenge the patient's denial unless it interferes with the patients ability to function. Often a patient will accept the severity of his or her illness while family members remain in a state of denial. It's best to be truthful, but when a patient doesn't wish to acknowledge information, persisting isn't valuable---it is just a reflection of an unsatisfied need of the person pressing the issue.
Examine who needs to recognize what before continuing with an attempt to destroy a patient's denial for there are times when patients are so overwhelmed and gravely ill that delivering bad new is useless.
If we take away denial, we'd better have something better to replace it.
Family And Friends
Sometimes people who have not been involved in the care of a dying patient try to step in and take control. Usually they do this to get some sense of control, and to ease guilty feelings they may have over their previous lack of interest or participation. These people may inject themselves into the patients management, and generally become a thorn in everyone's side. They may recommend new therapies or new consultations, and push their own agenda for straightening things out. Most people who do this mean well and have good intentions.
Other "concerned bystanders" are simply ignorant, self-serving, or frightened. They will cause turmoil and interrupt the path to a smooth closure for the patient and family.
People such as this are difficult to deal with, and even harder to ignore. It's important to consider with care any suggested treatment changes. However the point here, is that the suggestions from others about treatment, must really answer the following questions:
1. Is this what the patient wants or would have wanted?
2. If we find another medical problem, will it be worth doing more tests and treatment?
3. Will this really make a difference?
4. Since we know the person is dying, will more tests and treatments improve the quality of life? Or will they take up more "living time" and just prolong dying?
Now while keeping the above information in mind, we must also recognize that the family is a basic unit. And within each family, there is a complex system with established interactions, behaviors and responses.
Dying at best, is a stressful situation for all. And relationships during this time of duress may become strained, which may precipitate disagreements.
Also, family members whose contact with those close to the patient has been superficial might arrive on the scene with lots of "advice" on how to handle things. They may feel guilty for not having participated in the family core, and attempt to "take over". In this instance, they need to be advised that the way the patient is being cared for is the best way, and that the current method will continue despite their suggestions.
(c) copyright 1997
I am a primary caregiver and support for my husband. My job is to carry out his wishes for his life decisions, when he is incapable or so desires my aide. Whether I 'agree' or 'disagree' with his choices makes no difference in his care as this is his life and he so gracefully and joyfully chose ME to share his life and I chose HIM. This choice alone defined our journey ahead because with this choice was an awareness that it is with each other that we feel safe from all of life's threats. When we married our catch phrase was and still is "bring it on" as we decided to walk through life with a willingness to stand in the gap for one another when need be. I "got his back" and he has mine. Though my husband is terminal (we are all terminal in time) the empowerment of our togetherness has given me the strength and courage to 'know' that even after he has left this place, he has my back. It doesn't take much in the face of trauma to lose all sense of safety and comfort. In the face of trauma we all run on "auto-pilot". But if you have a strong foundation to stand on, even auto-pilot can be met with grace and dignity.
I have read several posts in this forum that have (by my perception)represented a people that are walking in the face of fear and exhibit feelings of abandonment or at the very least the fear of abandonment. I can not presume to know the inner-workings or dynamics of each situation, though I can as a human being have great sympathy and compassion for those that show up looking like a deer caught in headlights. I come forward at this time to speak about my approach. That is one of a caregiver that is committed to being the helpmate giving inspiration to my husband to walk through this storm of cancer with dignity, respect, and most of all empowerment of choice. There is not much in this life that we can truly control, and when given the news that you are terminal or your chances of survival are threatened, our core is rattled and we need to be empowered with control over our choices. This is no small sacrifice to make as a caregiver, though one of the toughest tasks to carry out. We are overwhelmed with fear of the unknown and grasp everything we can to retain our sense of control. This is not helpful to the ones we care for. I came across an article that I would like to share here that may lend some helpful information to anyone reading it.
I want to thank any of you who have chosen to read this post and understand that I am just one in this circle of hope and I too care about the outcome for each and every one of us. With each and every one of you participating in this forum, you have brought forward a sense of community and togetherness, which is very needed in times like these. May god bless each and everyone you with the power to sustain and walk through this storm and to reach the other side with a sense of empowerment.
Take care,
Michelle
__________________________________________________________________________________________
At Home With Terminal Illness
By Michael Appleton M.D.
Control
Behavior and control sometimes influences a person with a terminal illness. They may keep precise lists of their medications and activities, expect caregivers to be punctual and be generally demanding to all of those around them. It's the patient's need for control---or at least the illusion of control---that drives this behavior. People who were insecure and demanding and needed a rigid structure to their lives before their illness are often even more so when faced with dying.
For many people, dying is frightening. We lose much of the control we had in life. We can't do the things we want to do. We become frustrated and in time, may have to place our lives into the care of someone else.
And it is in these times, that both patient and caregivers attempt to exert influence over events that seems disorderly and unmanageable. Patients can appear fussy, unreasonable, and easily irritated when things are in disarray.
Try to understand the fear of losing control that underlies such behavior. Talk about these issues with the patient, or at least bring them up and make an effort to discuss them. It's helpful to allow and encourage as many activities as possible that will give the patient a sense of purpose and structure, and let them hold power over their fate.
When people are sick, particularly our loved ones, it's natural for us to want to do things for them to help make life easier. In doing so, we can contribute to their feelings of powerlessness and loss of control. Empowering people contributes to their sense of self-worth as human beings.
Remember: Enabling patients to retain control is empowering and healing.
Denial
Denial is our emotional buffer. It's an unconscious mechanism that cushions us against the painful events in our life. It's a way we can feel safe from threats to our survival. Some people are able to accept slowly the seriousness of their illness. Others can't seem to accept their dying, and will ignore facts as caregivers and physicians present them, or change the subject. Some patients may accept, to some degree, their impending death, but they can't clearly explain how they feel. Denial may also help some patients [and caregivers] get "over the hump" and through the worst part of what's happening.
Because denial allows us to maintain a feeling of safety, don't "break down" or challenge the patient's denial unless it interferes with the patients ability to function. Often a patient will accept the severity of his or her illness while family members remain in a state of denial. It's best to be truthful, but when a patient doesn't wish to acknowledge information, persisting isn't valuable---it is just a reflection of an unsatisfied need of the person pressing the issue.
Examine who needs to recognize what before continuing with an attempt to destroy a patient's denial for there are times when patients are so overwhelmed and gravely ill that delivering bad new is useless.
If we take away denial, we'd better have something better to replace it.
Family And Friends
Sometimes people who have not been involved in the care of a dying patient try to step in and take control. Usually they do this to get some sense of control, and to ease guilty feelings they may have over their previous lack of interest or participation. These people may inject themselves into the patients management, and generally become a thorn in everyone's side. They may recommend new therapies or new consultations, and push their own agenda for straightening things out. Most people who do this mean well and have good intentions.
Other "concerned bystanders" are simply ignorant, self-serving, or frightened. They will cause turmoil and interrupt the path to a smooth closure for the patient and family.
People such as this are difficult to deal with, and even harder to ignore. It's important to consider with care any suggested treatment changes. However the point here, is that the suggestions from others about treatment, must really answer the following questions:
1. Is this what the patient wants or would have wanted?
2. If we find another medical problem, will it be worth doing more tests and treatment?
3. Will this really make a difference?
4. Since we know the person is dying, will more tests and treatments improve the quality of life? Or will they take up more "living time" and just prolong dying?
Now while keeping the above information in mind, we must also recognize that the family is a basic unit. And within each family, there is a complex system with established interactions, behaviors and responses.
Dying at best, is a stressful situation for all. And relationships during this time of duress may become strained, which may precipitate disagreements.
Also, family members whose contact with those close to the patient has been superficial might arrive on the scene with lots of "advice" on how to handle things. They may feel guilty for not having participated in the family core, and attempt to "take over". In this instance, they need to be advised that the way the patient is being cared for is the best way, and that the current method will continue despite their suggestions.
(c) copyright 1997
0
Comments
-
Bless the caregivers
Welcome to the board! I loved reading your post because you have put into words what I tell my wife, my caregiver all the time. When I went into surgery, she had very specific instructions on what my wishes were in different situations. Many would have been rough for her to carry out but she said she would. Thankfully we didn't need to. She has been with me through thick and thin. She's seen me at my absolute worst. Sometimes she would break down and cry from seeing me like I was. It was hard to see her in that state. Shoot, when I would get down and grouchy, she still smiled and stuck right there with me.
The role of a caregiver is likened to saint in my mind. It's a tough job and I only hope I could do as good a job as mine has done. As I said, Bless the caregivers. You guys have to be strong even when we aren't. Thank each and every one of you!0 -
It's about time!
Welcome Michelle, it's about time you joined us!
Wow you really dove into your role as caregiver.. and it shows. You and Eric have a very deep bond, and it's times of crisis like this will test those bonds to the limit.
I look forward to your input here, but no squabbling with Eric!
best,
Lee0 -
Thanks Lee!LeeinLondon said:It's about time!
Welcome Michelle, it's about time you joined us!
Wow you really dove into your role as caregiver.. and it shows. You and Eric have a very deep bond, and it's times of crisis like this will test those bonds to the limit.
I look forward to your input here, but no squabbling with Eric!
best,
Lee
Lee,
Thanks for the welcoming words. No worries on squabbling here. There is much more important things in these times! Like for instance there was much need for a haircut and a shave today, so I propped him up in the chair and went to town! Boy, he sure does look handsome after all that grooming. Not that he doesn't look handsome otherwise, but hmmm sure does make him feel good!
"Times like this" is right! This is where the boys are separated from the men and girls from the women if you ask me. I went out and bought me a pair of 'big girl panties' right away!
Hope the two of you are having a wonderful Turkey Day and much hugs going out your way.
Regards,
Michelle
P.S. Should you decide you would like to purchase a pair of 'big boy pants' as well, I can set you up...LOL0 -
Hi Michelle,
I didn't know
Hi Michelle,
I didn't know you were a lurker up to now. I loved your response to my response on how to respect my mom's wishes. I really do feel that way too. I must not inject my desires on her! At work I would lead, steer, guide, and control. Now I will lead, steer, and guide, but leave out the control. She has all the control. I'm there to help - the wind beneath her wings so to speak (Oh dear - that was the song my son picked for the mother of the groom dance.) I cried.
I enjoyed reading your words and the article. I ought to cut out that article and keep it with me for when those folks pop into our lives and tell us what to do. Mom and I have walked the road from day one and we walk it to day end.
Thank you ever so much!
Ginny0 -
Thank you and Thank you!JimboC said:Bless the caregivers
Welcome to the board! I loved reading your post because you have put into words what I tell my wife, my caregiver all the time. When I went into surgery, she had very specific instructions on what my wishes were in different situations. Many would have been rough for her to carry out but she said she would. Thankfully we didn't need to. She has been with me through thick and thin. She's seen me at my absolute worst. Sometimes she would break down and cry from seeing me like I was. It was hard to see her in that state. Shoot, when I would get down and grouchy, she still smiled and stuck right there with me.
The role of a caregiver is likened to saint in my mind. It's a tough job and I only hope I could do as good a job as mine has done. As I said, Bless the caregivers. You guys have to be strong even when we aren't. Thank each and every one of you!
Jimbo,
Thank you for your warm welcome to the board. You are so very lucky to have your wife by your side through this awful dis-ease! I am happy to hear that she shares her tears with you, as this is reality and if we 'stuff' it will spill out elsewhere and then a cycle of displaced feelings is the result. Embrace her tears as she does yours (which from the sounds of your post here, you already do). And for you hope to as good a job as she has done for you, no doubt this experience has taught you the value of a nurturing spirit and you will pay it forward when the time comes! KUDOS!
Mucho hugs!
Michelle0 -
Laminate it and plaster it to the fridge!Ginny_B said:Hi Michelle,
I didn't know
Hi Michelle,
I didn't know you were a lurker up to now. I loved your response to my response on how to respect my mom's wishes. I really do feel that way too. I must not inject my desires on her! At work I would lead, steer, guide, and control. Now I will lead, steer, and guide, but leave out the control. She has all the control. I'm there to help - the wind beneath her wings so to speak (Oh dear - that was the song my son picked for the mother of the groom dance.) I cried.
I enjoyed reading your words and the article. I ought to cut out that article and keep it with me for when those folks pop into our lives and tell us what to do. Mom and I have walked the road from day one and we walk it to day end.
Thank you ever so much!
Ginny
Ginny,
Yes, lurker I was, until now. My cover is blown and I have emerged from the background...LOL
Thank you for your kind words and I am happy to hear that the article will be a help for you with your family. The article represents a lot of clarity for me and really does explain a lot about the struggles we attend to daily. I say Laminate it and plaster it on the fridge or anywhere you may need quick access! May your journey with your mother be a memorable and intimate one!
Many prayers to you and your mother!
Michelle0 -
Welcome Michelle,LilChemoSmoker said:Laminate it and plaster it to the fridge!
Ginny,
Yes, lurker I was, until now. My cover is blown and I have emerged from the background...LOL
Thank you for your kind words and I am happy to hear that the article will be a help for you with your family. The article represents a lot of clarity for me and really does explain a lot about the struggles we attend to daily. I say Laminate it and plaster it on the fridge or anywhere you may need quick access! May your journey with your mother be a memorable and intimate one!
Many prayers to you and your mother!
Michelle
Well I'm relatively new here too. My husband was diagnosed July 11, 2011 with Stage IV EC and suffered a stroke just 9 days later. We have been married for almost 42 years and I am his caregiver. I have so much admiration for you and Eric and the strength you two show on this site. This is such an ugly beast of a cancer but you have faced it head on with your heads held high. Good for you!! My husband had 28 radiation treatments and just 3 chemo sessions and that was enough. We know this cancer will take his life but we're doing all we can to enjoy what time we have left. Heck, today after leaving the hospital for fluids, we went to an Octoberfest. Two weekends ago, he went bow hunting for deer and although he needed much help, he really enjoyed himself. This week, we are flying to AZ for 3 wks. Life is stressful but it's good. We're trying to love hard and deep and that's all we can do. Thank you for posting. I have a tendancy to lean towards denial but that's an okay place for me.
Take care. I hope to hear from you on here soon!
Rita0 -
You got that right!ritawaite13 said:Welcome Michelle,
Well I'm relatively new here too. My husband was diagnosed July 11, 2011 with Stage IV EC and suffered a stroke just 9 days later. We have been married for almost 42 years and I am his caregiver. I have so much admiration for you and Eric and the strength you two show on this site. This is such an ugly beast of a cancer but you have faced it head on with your heads held high. Good for you!! My husband had 28 radiation treatments and just 3 chemo sessions and that was enough. We know this cancer will take his life but we're doing all we can to enjoy what time we have left. Heck, today after leaving the hospital for fluids, we went to an Octoberfest. Two weekends ago, he went bow hunting for deer and although he needed much help, he really enjoyed himself. This week, we are flying to AZ for 3 wks. Life is stressful but it's good. We're trying to love hard and deep and that's all we can do. Thank you for posting. I have a tendancy to lean towards denial but that's an okay place for me.
Take care. I hope to hear from you on here soon!
Rita
Rita,
As I sit here and write this I am in such sorrow for those that have fought the good fight. You are so right in saying this is an 'ugly beast' of a cancer. I know that they are working hard to find a cure for this cancer and I sure hope that they can figure this one out. Someone out there will pioneer a cure in the future, it is just so heartbreaking to not have that for our fighters today.
Almost 42 years...WOW! That is definitely a strong foundation to move within. Kudos for his bravery and stamina to endure such tasks in the face of such an illness. Kudos to his recovery from such a scary event as a stroke as well! Definitely embrace the 'now' and help him to 'live' his best life (which I am sure you are already doing). A flight to Arizona and a three week stay there sounds like a nice warm place to be.
Denial is a strong protector and as it should be. I am sure in your heart of hearts you 'know' reality and are secretly preparing for the times ahead (as I hear in your statements of loving hard and deep). There is nothing wrong with using the denial as your soft place to fall.
Anyway, Thank you very much for your warm welcome! Your 42 year long marriage is a testament in and of itself to the strength and endurance!
Many thanks!
Michelle0 -
I am new to this group. My
I am new to this group. My husband diagnosed Sept 2016 And back in chemo. I read your posting and it brought tears. It is a rough cancer. This past month has been a rough one for me-he is tough. But here lately he is withdrawn. I need to as one of the others said out on my big girl panties. Its hard on us as the caregivers- frequently we feel alone. This so helps feeling you are not alone. Thank you.
0
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