Newbie-Can you understand me?
I love my husband, but I get angry and frustrated with the emotional rollercoaster. I get angry at him for covering up his symptoms--for not telling me when he feels bad, or pretending in front of the doctor and I always look like I am making things up. I just don't know what to do anymore. I don't have an outlet. I am his only support system--all of the friends and relatives that he had when he was up and well are nowhere to be found. My entire life is going to work and come home and wait on him hand and foot. I don't mind, but I am a little tired now. I am angry and still grieving over my mother, but really no time to grieve. We have an 11 year old that seems to be angry with me and we are in counseling.
Can anyone relate to me?
Comments
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I feel your frustration and abandonment!
Hi Jackie!
Welcome to the right place. We are a very diverse group of individuals here and there will be others to chime in here soon. I just posted this to another newbie Stephanie whom is also struggling. Please know that you can gain support and love through this board as we all are walking this journey with you!
I post here in the hopes that sharing my experience will help someone else and that I may gain from others. I am not a professional and I am not qualified to give professional guidance. So please know that what I write is my own opinion based on my experience and perceptions.
My name is Michelle and I am wife to Eric (chemosmoker) on the Esophageal board. My husband was dx in June of this year with terminal Esophageal cancer. You said your husband has breast cancer and he 'pretends' or minimizes his symptoms and pain? Please see in the article below the section on denial. It sounds like he is there. It will help you have some insight, I think.
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 19970 -
There are many here who
There are many here who understand what you are going through. It's tough being a caregiver. We suffer along with the cancer patient, but never really know what they are going through. My partner is currenly undergoing treatment for lymphoma, and we've had our ups & downs. Just remember, you need to find time to take care of yourself (I know that's easier said than done most of the time, right?). There are many other caregivers here that give great advise. Best wishes to you and your husband.
Rachelle0 -
Thank you for your responseLilChemoSmoker said:I feel your frustration and abandonment!
Hi Jackie!
Welcome to the right place. We are a very diverse group of individuals here and there will be others to chime in here soon. I just posted this to another newbie Stephanie whom is also struggling. Please know that you can gain support and love through this board as we all are walking this journey with you!
I post here in the hopes that sharing my experience will help someone else and that I may gain from others. I am not a professional and I am not qualified to give professional guidance. So please know that what I write is my own opinion based on my experience and perceptions.
My name is Michelle and I am wife to Eric (chemosmoker) on the Esophageal board. My husband was dx in June of this year with terminal Esophageal cancer. You said your husband has breast cancer and he 'pretends' or minimizes his symptoms and pain? Please see in the article below the section on denial. It sounds like he is there. It will help you have some insight, I think.
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
Thank you for your response and helpful insight. I have held bottled up so many feelings. I talk to God so much... I just want to scream and cry because I feel like I am lost. I watch my husband everyday decline...Go from this vibrant man, who used to be the life of the party, to a man with the body of an eighty year old. I really don't know what to say or think. We don't discuss end of life plans. At one time we did, but now it's future places to go and things to do. He makes plans for the future..while I can't say anything, but yes. He gives me nothing to carry out.
Yes, he spends his days fussing and giving out advice. There are days he is mean as a road lizard...LOL! Trying to hold it together.... Thanks for the advice about the relatives. I have been through those things already...trying to tell me how to do things...MESSY MESSY! Anyway, I feel better already, just knowing I have someone to talk to . Thanks0 -
newRAB73 said:There are many here who
There are many here who understand what you are going through. It's tough being a caregiver. We suffer along with the cancer patient, but never really know what they are going through. My partner is currenly undergoing treatment for lymphoma, and we've had our ups & downs. Just remember, you need to find time to take care of yourself (I know that's easier said than done most of the time, right?). There are many other caregivers here that give great advise. Best wishes to you and your husband.
Rachelle
Thank you that I have several sets of ears! I look forward to sharing.0 -
newRAB73 said:There are many here who
There are many here who understand what you are going through. It's tough being a caregiver. We suffer along with the cancer patient, but never really know what they are going through. My partner is currenly undergoing treatment for lymphoma, and we've had our ups & downs. Just remember, you need to find time to take care of yourself (I know that's easier said than done most of the time, right?). There are many other caregivers here that give great advise. Best wishes to you and your husband.
Rachelle
Thank you that I have several sets of ears! I look forward to sharing.0 -
Good to read your post!RAB73 said:There are many here who
There are many here who understand what you are going through. It's tough being a caregiver. We suffer along with the cancer patient, but never really know what they are going through. My partner is currenly undergoing treatment for lymphoma, and we've had our ups & downs. Just remember, you need to find time to take care of yourself (I know that's easier said than done most of the time, right?). There are many other caregivers here that give great advise. Best wishes to you and your husband.
Rachelle
Nuff said!
Love to you!
-Michelle0 -
We are here for you!JackieA said:new
Thank you that I have several sets of ears! I look forward to sharing.
Jackie,
Sometimes that is all we need is someone to validate and be a sounding board! I too look forward to you sharing with all of us!
Love to you!
-Michelle0 -
Wow, these posts have shownLilChemoSmoker said:Good to read your post!
Nuff said!
Love to you!
-Michelle
Wow, these posts have shown me that I'm not the only one going through all of these emotions. I often feel as if my whole life is simply spinning out of control and that I'm also slowing losing my mind. I'm glad that I started to read this board, it really helps to know that I'm not alone. All my best, Cynthia0 -
Patients Point of View
Oh I can relate. You are angry and that is normal.
I am the brain cancer patient and my husband is my caregiver. All of our family (both sides) with the exception of our son and his 2 little girls, live out of state. However, we have managed to help him find a balance of work (he works a corporate job), work in our stained glass studio and he is then my full-time caregiver.
We had the cancer under manageable control until January of this year when I was hospitalized. I was re-admitted in February, again for another week, where the doctors finally started listening to us about what we thought was going on. We were right. I am just now starting to get back on my feet. I am tired a lot, have gained 25 pounds, have totally lost my hearing and my vision requires a new prescription lens every 4-6 weeks.
But what my husband of 19 years knows with absolute certainty is how very much I love him, how much I appreciate every single thing he does for me (and he does a lot) and I also try to make sure that when he gets an invite from friends or co-workers to go and do something, that he does it. His time is important to and I want him to maintain his sense of self and his sanity.
As for your husband not being forthcoming with facts? It's probably because he knows how tired you are of dealing with this and he doesn't want to add fuel to the fire and he is afraid that if he says or does the wrong thing, that you will snap. Many of the patients feel that way. I try to hide symptoms from my husband too, but he is very quick to notice when something is going on and he calls me on the carpet for it. I'm actually glad he does, because sometimes it feels like I could be imagining what is really going on and he always assure me that he has seen symptoms or signs as well.
My husband and I have an agreement. It's okay to get angry. It's okay to vent. Scream therapy anyone? Sign me up!!! But our agreement is that we are not to get angry at each other. I didn't ask for this and I'm not being punished by God because I did something wrong. It's not my fault. So we have agreed that the only entity to get angry at is the CANCER. That's right. Get angry at the cancer but not your beloved husband.
If you have the opportunity, I would humbly suggest you talk to someone (psychologist) who specializes in chronic or long-term illness. They can help you understand what is going on, not just with you, but with your husband as well. They are specially trained to help you deal with all the emotions and teh what ifs and if onlys. They are also good for getting the resources you need or helping you to find them.
Please don't give up on your husband or yourself. We couldn't do it without our wonderful caregivers, family and friends. We do understand the sacrifices you are making and we don't take them for granted. But trust me, when you get angry at us it hurts even worse because we start blaming ourselves for causing you pain. So come on here and vent away. You will find many who feel as you do and can offer you friendship, hope, love and time.
I pray God gives you the Peace, Mercy, Strength and Love you are seeking and the fortitude to continue on this journey.
Thank you from your husband and all of us other patients.
Teresa0 -
Hello, Jackie, and welcome.....
SAY IT OUT LOUD is my advice. I just recently found this site and it has helped me so very much because I'm able to come here, say what's on my mind and know that no one is going to judge me, make fun of me or discourage me. Lot's of love and understanding goes on around here.
My DH is a colo/rectal cancer patient. DX 12/10, chemo/rad then pacemaker replacement 5/11, surgery for resection/rectal removal 6/11 and is currently on chemo again. I, too, work a full time job (I bring home the bacon and he fries it up in the pan when he's up to it). Sometimes on the weekend, I think "God, I can't wait to get back to work -and- I hate my job." In other words, what's left for me! (I don't really hate my job, just going through a lot of stress there right now).
We don't discuss dying and the only plans he talks about are "when this is all over, I'm going to put new siding on the house." I'm thinking there are so many more important things in life, but, I don't say a word. His anger is rapidly escalating and I just basically ignore, ignore, ignore. So hard sometimes, but if I didn't I'd go crazy (and blow his brains out LOL)
So, I come here and say it out loud to someone, anyone, that cares to listen. It has saved what little bit of sanity I have left. Hope we can do the same for you.
(((((hugs)))))
Deb0 -
Helloddpekks said:Hello, Jackie, and welcome.....
SAY IT OUT LOUD is my advice. I just recently found this site and it has helped me so very much because I'm able to come here, say what's on my mind and know that no one is going to judge me, make fun of me or discourage me. Lot's of love and understanding goes on around here.
My DH is a colo/rectal cancer patient. DX 12/10, chemo/rad then pacemaker replacement 5/11, surgery for resection/rectal removal 6/11 and is currently on chemo again. I, too, work a full time job (I bring home the bacon and he fries it up in the pan when he's up to it). Sometimes on the weekend, I think "God, I can't wait to get back to work -and- I hate my job." In other words, what's left for me! (I don't really hate my job, just going through a lot of stress there right now).
We don't discuss dying and the only plans he talks about are "when this is all over, I'm going to put new siding on the house." I'm thinking there are so many more important things in life, but, I don't say a word. His anger is rapidly escalating and I just basically ignore, ignore, ignore. So hard sometimes, but if I didn't I'd go crazy (and blow his brains out LOL)
So, I come here and say it out loud to someone, anyone, that cares to listen. It has saved what little bit of sanity I have left. Hope we can do the same for you.
(((((hugs)))))
Deb
Deb,
I know what you mean about work. My job has been very stressfull lately, on top of family stress (my family and my partners). My partner is also working almost full time through chemo (he takes the day off after chemo and works full days when he feels up to it) at a job that he hates. His anger has escalated and is very hard to ignore. How do you do it?
Hugs,
Rachelle0 -
Teresapalmyrafan said:Patients Point of View
Oh I can relate. You are angry and that is normal.
I am the brain cancer patient and my husband is my caregiver. All of our family (both sides) with the exception of our son and his 2 little girls, live out of state. However, we have managed to help him find a balance of work (he works a corporate job), work in our stained glass studio and he is then my full-time caregiver.
We had the cancer under manageable control until January of this year when I was hospitalized. I was re-admitted in February, again for another week, where the doctors finally started listening to us about what we thought was going on. We were right. I am just now starting to get back on my feet. I am tired a lot, have gained 25 pounds, have totally lost my hearing and my vision requires a new prescription lens every 4-6 weeks.
But what my husband of 19 years knows with absolute certainty is how very much I love him, how much I appreciate every single thing he does for me (and he does a lot) and I also try to make sure that when he gets an invite from friends or co-workers to go and do something, that he does it. His time is important to and I want him to maintain his sense of self and his sanity.
As for your husband not being forthcoming with facts? It's probably because he knows how tired you are of dealing with this and he doesn't want to add fuel to the fire and he is afraid that if he says or does the wrong thing, that you will snap. Many of the patients feel that way. I try to hide symptoms from my husband too, but he is very quick to notice when something is going on and he calls me on the carpet for it. I'm actually glad he does, because sometimes it feels like I could be imagining what is really going on and he always assure me that he has seen symptoms or signs as well.
My husband and I have an agreement. It's okay to get angry. It's okay to vent. Scream therapy anyone? Sign me up!!! But our agreement is that we are not to get angry at each other. I didn't ask for this and I'm not being punished by God because I did something wrong. It's not my fault. So we have agreed that the only entity to get angry at is the CANCER. That's right. Get angry at the cancer but not your beloved husband.
If you have the opportunity, I would humbly suggest you talk to someone (psychologist) who specializes in chronic or long-term illness. They can help you understand what is going on, not just with you, but with your husband as well. They are specially trained to help you deal with all the emotions and teh what ifs and if onlys. They are also good for getting the resources you need or helping you to find them.
Please don't give up on your husband or yourself. We couldn't do it without our wonderful caregivers, family and friends. We do understand the sacrifices you are making and we don't take them for granted. But trust me, when you get angry at us it hurts even worse because we start blaming ourselves for causing you pain. So come on here and vent away. You will find many who feel as you do and can offer you friendship, hope, love and time.
I pray God gives you the Peace, Mercy, Strength and Love you are seeking and the fortitude to continue on this journey.
Thank you from your husband and all of us other patients.
Teresa
Thank you for your insight. I really thought that patients did not understand caregivers. And I see you do. It is so good to know that someone understands. I thought I was about to lose my mind. My younger son and I attend counseling sessions through my job. My husband does not want to go to counseling. This weekend we had a tremendous blow out about his niece living with us. She was suppose to be an asset to this situation' turns out she is definitely a liability.
I am looking forward to talking with everyone.
Thanks0 -
THe angerRAB73 said:Hello
Deb,
I know what you mean about work. My job has been very stressfull lately, on top of family stress (my family and my partners). My partner is also working almost full time through chemo (he takes the day off after chemo and works full days when he feels up to it) at a job that he hates. His anger has escalated and is very hard to ignore. How do you do it?
Hugs,
Rachelle
You know, I am the only one that works in my house. Our niece, his actually, moved in with us back in February. We thought she would help out...turns out it is a situation that has literally made me sick. I thought she would really help out but it is a mess. She only helps when others are watching. It is really just me. I thank God I have a boss that is so understanding. I make all of my husband's appointments for the past 2 plus years. We have to go to the dr. at least 6 times a month.
It is so stressful at my house! IF my husband could work, I know he would. But unfortunately he can't. He is on disability. Our house income dropped over 30,000. I pay all the bills and I come home sometimes to a dirty house. I know my husband is unable but we have an extra body around the house...another story.
The anger that my husband has is affecting me tremendously. Yesterday he was so angry that he threw his walker--not aiming at anyone, but he blew up and starting cussing at our situation. I remained calm. He was just upset because of the situation with the niece.
He is sooo grouchy towards everybody... I can only imagine why. I know that I am not where he is. Maybe this board will help me understand him more.0 -
It's Time for theJackieA said:THe anger
You know, I am the only one that works in my house. Our niece, his actually, moved in with us back in February. We thought she would help out...turns out it is a situation that has literally made me sick. I thought she would really help out but it is a mess. She only helps when others are watching. It is really just me. I thank God I have a boss that is so understanding. I make all of my husband's appointments for the past 2 plus years. We have to go to the dr. at least 6 times a month.
It is so stressful at my house! IF my husband could work, I know he would. But unfortunately he can't. He is on disability. Our house income dropped over 30,000. I pay all the bills and I come home sometimes to a dirty house. I know my husband is unable but we have an extra body around the house...another story.
The anger that my husband has is affecting me tremendously. Yesterday he was so angry that he threw his walker--not aiming at anyone, but he blew up and starting cussing at our situation. I remained calm. He was just upset because of the situation with the niece.
He is sooo grouchy towards everybody... I can only imagine why. I know that I am not where he is. Maybe this board will help me understand him more.
Boot, Scoot and Boogie......also known as it's time to boot all the bozos and idiots out of your life.
First place to start, if you are able, is with the niece. You and your husband are both able to agree that she is taking up air space (both literally and figuratively). Next, Put anyone that is able, ready and willing to work, to work. Ask your child to help out (if not already doing so) with age appropriate chores. My daughter was only 8 when I was diagnosed and she had it pretty easy, even she agrees with that now. But we had her setting the table, cleaning her room, etc. Anything that would help me out. Our son, the same thing. He was 10 and he helped his dad with lawn maintenance and taking out the trash so his dad didn't have to come home to do everything.
Can't boot your niece to the curb? Give her a choice. She either "joyfully and willingly" helps out around the house without asking or she gets the boot, scoot and boogie treatment (especially if she is of age).
Friends or neighbors offered to help? Take 'em up on it. Meals to freeze, housecleaning services, etc. Have a lawn that needs cut? Hire the local boys once a week. Trust me, $20 a week goes a long way towards peace and much needed time.
I am so sorry that you have to go through this. Your husband doesn't mean to get cranky, but sometimes we just literally can't help it. He is frustrated because he wants his "normal" life back and guess what? It ain't happening right now!!!! He wants control over something, anything, in his life. We feel that we have lost control over everything so we try and fight for control over anything! Because then we feel like we aren't locked in a trap from which there is no escape.
You are a trooper for dealing with all of this. But it is time to take charge of your own life and you need to start now. Make rules, set limits and boundaries, where you need to, with who you need to. Got medical insurance that will help? Call in a companion/nurse, etc. to come sit with your husband while you go out with your child and take a walk or go for a picnic. But take some time for you and your child and/or just yourself to get away and reclaim what's left of your sanity. You need to do this.
Hang in there sweetheart! You're worth it and so is your family. But take care of you FIRST, otherwise you won't be able to help take care of anyone else.
Peace,
Teresa0 -
Love it Teresa!palmyrafan said:It's Time for the
Boot, Scoot and Boogie......also known as it's time to boot all the bozos and idiots out of your life.
First place to start, if you are able, is with the niece. You and your husband are both able to agree that she is taking up air space (both literally and figuratively). Next, Put anyone that is able, ready and willing to work, to work. Ask your child to help out (if not already doing so) with age appropriate chores. My daughter was only 8 when I was diagnosed and she had it pretty easy, even she agrees with that now. But we had her setting the table, cleaning her room, etc. Anything that would help me out. Our son, the same thing. He was 10 and he helped his dad with lawn maintenance and taking out the trash so his dad didn't have to come home to do everything.
Can't boot your niece to the curb? Give her a choice. She either "joyfully and willingly" helps out around the house without asking or she gets the boot, scoot and boogie treatment (especially if she is of age).
Friends or neighbors offered to help? Take 'em up on it. Meals to freeze, housecleaning services, etc. Have a lawn that needs cut? Hire the local boys once a week. Trust me, $20 a week goes a long way towards peace and much needed time.
I am so sorry that you have to go through this. Your husband doesn't mean to get cranky, but sometimes we just literally can't help it. He is frustrated because he wants his "normal" life back and guess what? It ain't happening right now!!!! He wants control over something, anything, in his life. We feel that we have lost control over everything so we try and fight for control over anything! Because then we feel like we aren't locked in a trap from which there is no escape.
You are a trooper for dealing with all of this. But it is time to take charge of your own life and you need to start now. Make rules, set limits and boundaries, where you need to, with who you need to. Got medical insurance that will help? Call in a companion/nurse, etc. to come sit with your husband while you go out with your child and take a walk or go for a picnic. But take some time for you and your child and/or just yourself to get away and reclaim what's left of your sanity. You need to do this.
Hang in there sweetheart! You're worth it and so is your family. But take care of you FIRST, otherwise you won't be able to help take care of anyone else.
Peace,
Teresa
Great post! See ya'll in a couple days. We are off to Cumberland Mountain State Park and will see ya in a couple of days!
Love to you ALL!
-Michelle0 -
yes it is!palmyrafan said:It's Time for the
Boot, Scoot and Boogie......also known as it's time to boot all the bozos and idiots out of your life.
First place to start, if you are able, is with the niece. You and your husband are both able to agree that she is taking up air space (both literally and figuratively). Next, Put anyone that is able, ready and willing to work, to work. Ask your child to help out (if not already doing so) with age appropriate chores. My daughter was only 8 when I was diagnosed and she had it pretty easy, even she agrees with that now. But we had her setting the table, cleaning her room, etc. Anything that would help me out. Our son, the same thing. He was 10 and he helped his dad with lawn maintenance and taking out the trash so his dad didn't have to come home to do everything.
Can't boot your niece to the curb? Give her a choice. She either "joyfully and willingly" helps out around the house without asking or she gets the boot, scoot and boogie treatment (especially if she is of age).
Friends or neighbors offered to help? Take 'em up on it. Meals to freeze, housecleaning services, etc. Have a lawn that needs cut? Hire the local boys once a week. Trust me, $20 a week goes a long way towards peace and much needed time.
I am so sorry that you have to go through this. Your husband doesn't mean to get cranky, but sometimes we just literally can't help it. He is frustrated because he wants his "normal" life back and guess what? It ain't happening right now!!!! He wants control over something, anything, in his life. We feel that we have lost control over everything so we try and fight for control over anything! Because then we feel like we aren't locked in a trap from which there is no escape.
You are a trooper for dealing with all of this. But it is time to take charge of your own life and you need to start now. Make rules, set limits and boundaries, where you need to, with who you need to. Got medical insurance that will help? Call in a companion/nurse, etc. to come sit with your husband while you go out with your child and take a walk or go for a picnic. But take some time for you and your child and/or just yourself to get away and reclaim what's left of your sanity. You need to do this.
Hang in there sweetheart! You're worth it and so is your family. But take care of you FIRST, otherwise you won't be able to help take care of anyone else.
Peace,
Teresa
Teresa, you are so right. I have had it up to my nose with this. My son has chores and he helps out tremendously. Well...I really don't want to keep beating that drum. There are so many other pertinent things to talk about. It is truly time for a boot and scoot as you call it.
So may people on this site are going through so much that I already feel like I am complaining too much. I want to keep my main focus on keeping our spirits up.
Does anyone have a story about he rollercoaster ride? the one where you are waiting for the next move...0 -
yes it is!palmyrafan said:It's Time for the
Boot, Scoot and Boogie......also known as it's time to boot all the bozos and idiots out of your life.
First place to start, if you are able, is with the niece. You and your husband are both able to agree that she is taking up air space (both literally and figuratively). Next, Put anyone that is able, ready and willing to work, to work. Ask your child to help out (if not already doing so) with age appropriate chores. My daughter was only 8 when I was diagnosed and she had it pretty easy, even she agrees with that now. But we had her setting the table, cleaning her room, etc. Anything that would help me out. Our son, the same thing. He was 10 and he helped his dad with lawn maintenance and taking out the trash so his dad didn't have to come home to do everything.
Can't boot your niece to the curb? Give her a choice. She either "joyfully and willingly" helps out around the house without asking or she gets the boot, scoot and boogie treatment (especially if she is of age).
Friends or neighbors offered to help? Take 'em up on it. Meals to freeze, housecleaning services, etc. Have a lawn that needs cut? Hire the local boys once a week. Trust me, $20 a week goes a long way towards peace and much needed time.
I am so sorry that you have to go through this. Your husband doesn't mean to get cranky, but sometimes we just literally can't help it. He is frustrated because he wants his "normal" life back and guess what? It ain't happening right now!!!! He wants control over something, anything, in his life. We feel that we have lost control over everything so we try and fight for control over anything! Because then we feel like we aren't locked in a trap from which there is no escape.
You are a trooper for dealing with all of this. But it is time to take charge of your own life and you need to start now. Make rules, set limits and boundaries, where you need to, with who you need to. Got medical insurance that will help? Call in a companion/nurse, etc. to come sit with your husband while you go out with your child and take a walk or go for a picnic. But take some time for you and your child and/or just yourself to get away and reclaim what's left of your sanity. You need to do this.
Hang in there sweetheart! You're worth it and so is your family. But take care of you FIRST, otherwise you won't be able to help take care of anyone else.
Peace,
Teresa
Teresa, you are so right. I have had it up to my nose with this. My son has chores and he helps out tremendously. Well...I really don't want to keep beating that drum. There are so many other pertinent things to talk about. It is truly time for a boot and scoot as you call it.
So may people on this site are going through so much that I already feel like I am complaining too much. I want to keep my main focus on keeping our spirits up.
Does anyone have a story about he rollercoaster ride? the one where you are waiting for the next move...0 -
Waiting for the other shoe to drop!JackieA said:yes it is!
Teresa, you are so right. I have had it up to my nose with this. My son has chores and he helps out tremendously. Well...I really don't want to keep beating that drum. There are so many other pertinent things to talk about. It is truly time for a boot and scoot as you call it.
So may people on this site are going through so much that I already feel like I am complaining too much. I want to keep my main focus on keeping our spirits up.
Does anyone have a story about he rollercoaster ride? the one where you are waiting for the next move...
Jackie,
Yeah, we all have the stories of the roller coaster ride and the inevitable other shoe dropping. It is a constant theme in the face of cancer. Just today I returned from a two day stay at Cumberland Mountain park with my husband and in-laws only to read on the EC board of several members having found mets to bones and liver, along with strokes and bad scans. This is a daily event in the Esophageal Cancer world as the only cure is surgery and so many are not diagnosed until in last stage and not operable. Way too many patients that walk into the hall as palliative care only from the start. Cancer on any level is messy and unpleasant. Most of all it is emotionally and physically draining on the patients, their families and their caregivers. I pray everyday for the ability to find balance in my day and to not lose sight of the moments that will soon become my memories.
Love to you all!
-Michelle0 -
HiJackieA said:yes it is!
Teresa, you are so right. I have had it up to my nose with this. My son has chores and he helps out tremendously. Well...I really don't want to keep beating that drum. There are so many other pertinent things to talk about. It is truly time for a boot and scoot as you call it.
So may people on this site are going through so much that I already feel like I am complaining too much. I want to keep my main focus on keeping our spirits up.
Does anyone have a story about he rollercoaster ride? the one where you are waiting for the next move...
My mom has primary peritoneal cancer. She was diagnosed in April. It was fine when i took a couple months off work. I had time to be a nurse and a mother to my daughter. However, my issue is my father. My mother has him sooo spoiled that his life has not changed one bit. I make him sandwiches for when he gets done work, i do his laundry. Oh, and also, I take full care of his wife. He has this illusion that is he goes up and sits in bed with her for like 20 mintues than he is doing his part. This makes a huge problem between me and my mom. She will never take my side. If anything were to happen to her, i am not going to be his wife. I am 33 yrs. old with my own child. I work full time and am single. I think it's time for him to take over a bit. I wish everyone could see his childish behavior. He flipped last weekend and refused to eat take-out from where my mom wanted him too because he hates it there. He went upstairs like a kid and my poor sick mom had to go sleep in my daughter's room. He waited all nite till we went to bed and than came down to sneak food. I just don't get it. She couldn't leave the house. she is sick. He has no idea. He's not even her caregiver.
I know people need time away from the situation, but he never is in the situation. When my mom had her debulking surgery in July, I cried when i saw her. She looked terrible. Him and my sister tols me to stop crying. She was gonna be fine and i'm overreacting.
I know that if she someday isn't here, I put in my full effort. She needs me and i am there. Even if its just to talk, or clean her dentures, or anything. I just know she needs me.
I am back at work again since July and have been having behavioral problems with my child. She suffers the most because when i have had enough with everything, I take it out on her. I am really having problems . Lately all I do is cry. At work, in bed at nite. It's innapropriate.0 -
Hi Best FriendBest Friend said:Hi
My mom has primary peritoneal cancer. She was diagnosed in April. It was fine when i took a couple months off work. I had time to be a nurse and a mother to my daughter. However, my issue is my father. My mother has him sooo spoiled that his life has not changed one bit. I make him sandwiches for when he gets done work, i do his laundry. Oh, and also, I take full care of his wife. He has this illusion that is he goes up and sits in bed with her for like 20 mintues than he is doing his part. This makes a huge problem between me and my mom. She will never take my side. If anything were to happen to her, i am not going to be his wife. I am 33 yrs. old with my own child. I work full time and am single. I think it's time for him to take over a bit. I wish everyone could see his childish behavior. He flipped last weekend and refused to eat take-out from where my mom wanted him too because he hates it there. He went upstairs like a kid and my poor sick mom had to go sleep in my daughter's room. He waited all nite till we went to bed and than came down to sneak food. I just don't get it. She couldn't leave the house. she is sick. He has no idea. He's not even her caregiver.
I know people need time away from the situation, but he never is in the situation. When my mom had her debulking surgery in July, I cried when i saw her. She looked terrible. Him and my sister tols me to stop crying. She was gonna be fine and i'm overreacting.
I know that if she someday isn't here, I put in my full effort. She needs me and i am there. Even if its just to talk, or clean her dentures, or anything. I just know she needs me.
I am back at work again since July and have been having behavioral problems with my child. She suffers the most because when i have had enough with everything, I take it out on her. I am really having problems . Lately all I do is cry. At work, in bed at nite. It's innapropriate.
I totally understand what you are saying! Before my mom passed in January, I was having the similar feelings. It seemed like everyone else had lost their minds. Honestly, what is happening to your dad sounds like denial. I learned that each individual connected to the person that is ill will deal with things differently. Your mom and dad have probably been together some time now, and all he knows is her taking care of him. Well, he is actually having a difficult time dealing with it. It is called life, normalcy, interrupted! He doesn't know how to deal with the situation. He is hurting. I believe you are the strong one--- and the one who is not in denial and able to face what's going on. Go ahead and cry now. Sounds like you are dealing with anticipatory grief as well with all the crying. You are angry and sad at the same time. It is normal. We find out a lot about other people and ourselves in trials like these.
Wow! we had a very difficult time with my younger sister. She was in so much overacting-total drama queen. The other one minimized everything, and one (myself) was willing to face it, but had hope still. The other thought she was strong, but couldn't handle it at all. My brother, hung in there and took care of her until the end. So fresh in my mind.
Continue to be there for your mom. They will be the ones with the regrets. Set the limitations for your dad, because you can become overwhelmed trying to do everything. Be very clear about your expectations...take care of yourself, and yes, cry. It really does help in the long run.
Hang in there0
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