Caregiver-Spouse with cancer is mad at me

allackey

In October I posted the same subject; but now that my wife is at the end of her chemo I now need some caregiver support and advise.

After her last chemo, she has portrayed me as "not being there" for her, being basically selfish, and delegating duties to others. She said she just wanted me to be there for her. I did go on a missions trip and it was something that she supported and told me to do at the beginning. I was absolutely blindsided by her feeling and statement. In my eyes I have been there, and have considered it my honor to care for her. I have taken care of us and our children and have done it with care to be humble to be sure that nothing is "about me". The bottom line is that she is truly so far from the truth, that I want to find out if this is typical to go through.

I wonder if deep down she is coping with the fact that I don't "have cancer too" and in that respect am not with her?

Wow! Has anyone been blindsided by their partner with cancer? I feel like I've been hit with a 2x4 board!

slickwilly

allackey
I had cancer about 7 years ago. And I will admit that I was not rational alot of the time. But I also realize there are two side to every story. There is no way you can understand what your wife is going through. And she proubly does not know of all the things you are doing to keep the family going. I could sit here and try to guess what the root of the problem is but it would do no good. There comes a time for an open conversation between you two to get at the bottom of her anger. And if it requires an outside therapist then I am sure her Oncologist can arrange that. Without getting at the main problem here this could go on for years. Her fear and hate will only build upon itself. Cancer can easily ruin a marriage and pull a family apart. And I don't care how good anyone thinks their marriage is or has been. If an open conversation is not in the cards then seek help. Best wishes Slickwilly

appleyellowgreen

Guilt trips
I'm in your situation. My husband is going into his second chemo treatment. He has already had three surgeries since 2005. Small cell lung cancer. Nothing is ever enough.

Once you really get that - once you really get that it HAS to be all about her - it gets easier. It's not you. I have no idea what your entire situation is. I don't know if you go to work and have someone come in to stay with your wife. I don't know how old your children are. I don't know what your wife's side effects are/were. There are so many different elements to being a caregiver, a patient doesn't see the whole picture. Because the patient only sees his/her own needs.

I know my husband will yell to me from the bedroom when I'm in the living room. It always sounds urgent. Sometimes, all he wants me to do is turn off a light that's bothering him. There are a lot of nonsensical things that take really irritate patients. Light. Sound. Taste. Touch. They're super sensitive. But because I don't want to miss the one time he really needs something, I run. It really aggravates me, but I smile.

I save my arguments for motivating moments. My husband has a tendency to be lazy about his recovery. Cancer is something that is happening to him and he is pissed off. Understandably. And I am pissed off that he lies around all day instead of trying to get stronger. After the initial effects of a chemo session wear off, I think he should take the initiative to build himself up.

I'm always told I don't understand. I'm always told how much mental pain he is in. I'm always told I can't feel what he's feeling. I agree. But it works exactly the same way from our side. He doesn't understand what I'm going through. He doesn't know the horrible thoughts I have every night when I go to sleep or how I dread what the next day will bring. But I put on a happy face.

I can do this because I have let go of the guilt. No, I'll never do enough. I'll just do all that I can. I have no children and I work from home, so I am with him all the time. He usually apologizes for his anger and selfishness at the end of the day - it does make a difference, but I don't need the apology any more. I know I'm doing all I can. He can't send me on a guilt trip any more.

I think you need to examine your behavior and see if you are falling short anywhere. I have a feeling you're not. But I agree with Willy that you need to have a good talk with your wife, and you need to go into that talk prepared. The hospital where my husband is receiving his chemo has psycho-oncologists who will sit down with you and work things out. Having a third, neutral party present to monitor the conversation is a big help. Any family therapist or couples therapist can moderate. But if the facility where your wife gets treatment has anyone - social worker or psychiatrist/psychologist- on staff, see what they can do.

It's tough. You give so much and your not looking for applause, but getting blindsided hurts like hell. I know. It took time to find a new normal in my house. It keeps changing. But I'm a pretzel these days - have to twist and bend to the occasion and need of the moment.

You're not alone.

Apple Yellow

AnnaLeigh

AppleYellow went to the heart of the matter
I am terribly sorry to hear that this emotional twist has been added to the already heaping pile of things for you to sort out. Apple Yellow Green went right to the heart of the matter. The cancer patient has absolutely no clue what we caregivers are going through (just as we can only imagine what they are feeling even though we live with them, right at their side, day-in and day-out). My husband could not understand why I would need extra help around the house because he could not possibly know what was going on behind the scenes while he was sleeping off the fatigue of chemo. To him, it was just all of the stuff I normally did anyway before the cancer diagnosis.

Women have a tendency to watch a capable man take care of duties, chores, tasks and problems and assume they do it with ease because men can be so efficient, logical, non-emotional, black-and-white and have pin-point accuracy with which to identify problems. When a man repairs the car or house out of love for his family and wanting to provide for them, all a woman can see is "he was doing his duty". It is possible for a man to actually do the laundry as an act of love, not just as a need to stop running around the house naked.

For many months I did not share my feelings of grief, anxiety and being overwhelmed with my husband because I thought it would be adding to his misery. But when I did, I found out that he shared many of the same feelings and it opened his eyes to how deeply I cared for him. My depth of despair about the situation was only equal to the depth of my love for him. Perhaps by being so outwardly strong and courageous, your wife has mistaken this for a lack of depth of compassion.

Cancer patients become very selfish when their entire focus turns inward in an effort to shut out the rest of the world, deny feelings they can't deal with or in an effort to examine why their bodies have betrayed them and tunnel vision is the result. That does not make it fair to treat us caregivers with so little respect and it does not mean they get a free ticket to be as ornery as they want to.

Anger is one aspect of the cancer patient's process and it can come and go. It can also be a transference on to you for all of the other things she is angry about. You are just a convenient and safe person/outlet because she knows deep inside that you love her. i.e., when children act out only with their parents because they know they will still be loved.

A specialist/therapist in this area is definitely in order. As good as we caregivers are - this one is too big for us to handle alone.

You deserve respect and love for your devotion,

AnnaLeigh

grandmafay

Tough Time
I'm sorry you are having a tough time. I was blessed with having a husband who told me regularly that he thought my job as caregiver was harder than his as care receiver. Yet there were still times when he became a little demanding and unreasonable from my point of view. Communication was the best approach for us. I'd ask what it was he expected of me. Then we would talk it out. Often times, we would find that there was a misunderstanding on one or both of our parts. Because women and men often talk different languages, you might want to as your wife what her meaning and understanding is of "just being there for me." For me it means being totally present when you are with me, listening with your whole mind, and being willing to have hard conversations. For someone else it may be physical presence and a whole lot of other things. Also, keep in mind that cancer and cancer treatment can affect your whole being and thinking. Even those of us who are caregivers have a new normal. Take care of yourself, too. Fay

Gracie44

My husband was diagnosed
My husband was diagnosed with stage 3 small cell lung cancer in December. He is having extensive chemo and radiation. He always seems to be yelling at me for something. I am scared,too, and he gets mad at me if I get depressed. At first I was really angry because I have begged him for years to stop smoking. I have never smoked. My first husband died of cancer, so this is really hard for me. I feel like I am living with a totally different person the last few months. I can't do anything to please him and most days he just wants me to leave. We also have had some financial difficulties but we are working them out. I just keep telling myself that he really doesn't mean what he says, but some days I just end up crying because of his mean words. He says we are growing apart and instead we should be growing closer. I love him so much and I will always stand by him. I guess the only thing to do is have lots of patience and know you are doing the best you can under a very stressful situation.

junklady

Gracie44 said:

My husband was diagnosed
My husband was diagnosed with stage 3 small cell lung cancer in December. He is having extensive chemo and radiation. He always seems to be yelling at me for something. I am scared,too, and he gets mad at me if I get depressed. At first I was really angry because I have begged him for years to stop smoking. I have never smoked. My first husband died of cancer, so this is really hard for me. I feel like I am living with a totally different person the last few months. I can't do anything to please him and most days he just wants me to leave. We also have had some financial difficulties but we are working them out. I just keep telling myself that he really doesn't mean what he says, but some days I just end up crying because of his mean words. He says we are growing apart and instead we should be growing closer. I love him so much and I will always stand by him. I guess the only thing to do is have lots of patience and know you are doing the best you can under a very stressful situation.

Frustrated
My man is end stage laryngeal cancer and I am very frustrated and angry. He won't talk about anything. When I ask him what's going on, he says nothing. How can I face what is coming if he won't tell me? I need to know everything so I can keep on top of things. I see small changes and I think he does too. Is it because he does not want me to worry about him? Well, that's all I do. Every little thing is on my mind day and night. If I feel like crying , I have to go outside so he won't see me, He says don't cry, well I just can't turn it off like a faucet. I don't want him to suffer and be in pain. I'm sure there are a lot of concerns going on in his mind, knowing that he is dying. I just can't imagine how he feels everyday. Breaks my heart. I have no close friends, so this is how I get it out. Sorry. Sure am glad this site is here to vent and see how other people feel and deal with life. All we can do is live everyday to the best. I'm glad he is still with me and I tell him I love him ever so much everyday. I feel I'm doing the best I can under stressful circumstances and will continue to do so. I'm strong, I'll make it, whatever it takes.

crose

I understand
I feel blindsided as well. My husband has stage IV esophageal cancer and I never know what I'm going to "walk into" when I come home from work. It's hard to deal with the fact that he has this horrible disease, and that we can't enjoy whatever time he has left because of his mood swings. If it weren't for supportive friends, I would feel totally deserted. It is a very lonely feeling.
I really can't understand people who try to put a positive spin on cancer, saying it's the "best thing that ever happened to them". To me, it's the worst thing that can happen, especially from the caretaker point of view.
The only thing you can do is remember to take care of yourself, too. Go on walks, take in a movie, draw or paint, or do some other hobby, even if it's just a few minutes a day. If you don't take care of yourself, you will have nothing left to give.

FlDino

My wife snipped at me a
My wife snipped at me a couple of times near the end. It hurt, but then I got to knowing that she didn't really mean it. She did that as a defense mechanism when things happened to her she couldn't control. She knew she was going to die and as strong as she was, she still had moments of weakness, for lack of a better word.

Shake the hurt off and know they are doing it because they maybe are frustrated at something happening to them that they cannot change.

icezam19

roller coaster ride
I am 59 years old. My husband has had cancer for 13 years. Recently, the doctor told me that our current chemo is only palliative. My husband lost 30 pounds and was on lots of pain pills which made him sleep and he did not interact with me very often. I adjusted to this and found ways to cope as he was pretty cranky and very withdrawn. Now, out of nowhere...for the last 5 days, he is taking a turn for the better and acting more normal.

Remember, I have been his caretaker for 13 years.............up and down, good and bad.
This time, I am frustrated by his "return to my world" because he is taking up right where he left off. Problem is............I had to adapt to his recent downtime and re-structured many things. Now he is "un-doing" things and doesn't realize that this is a strain on me. I am so embarassed to write about this as I know I should be rejoicing. Frankly, my head is spinning and the constant up and down pace is maddening. I just want a little peace and maybe just a teeny tiny focus on me for one second.

I spent all of the last 13 years focusing on my husband and I thought there would be time for me when he was gone and I was grieving. So I postponed "me time." After all, the dear man is dying. How dare I make it "about me." Again I am so embarassed to post this. I DO LOVE HIM but I am getting weary.

Barbara53

icezam19 said:

roller coaster ride
I am 59 years old. My husband has had cancer for 13 years. Recently, the doctor told me that our current chemo is only palliative. My husband lost 30 pounds and was on lots of pain pills which made him sleep and he did not interact with me very often. I adjusted to this and found ways to cope as he was pretty cranky and very withdrawn. Now, out of nowhere...for the last 5 days, he is taking a turn for the better and acting more normal.

Remember, I have been his caretaker for 13 years.............up and down, good and bad.
This time, I am frustrated by his "return to my world" because he is taking up right where he left off. Problem is............I had to adapt to his recent downtime and re-structured many things. Now he is "un-doing" things and doesn't realize that this is a strain on me. I am so embarassed to write about this as I know I should be rejoicing. Frankly, my head is spinning and the constant up and down pace is maddening. I just want a little peace and maybe just a teeny tiny focus on me for one second.

I spent all of the last 13 years focusing on my husband and I thought there would be time for me when he was gone and I was grieving. So I postponed "me time." After all, the dear man is dying. How dare I make it "about me." Again I am so embarassed to post this. I DO LOVE HIM but I am getting weary.

don't feel embarrassed
Thirteen years! How many halos are there hovering over your head?

After all that time, I don't need to remind you that just like the bad times, the good times are usually temporary, too. Stay your course and you will be fine, eventually.

I'm glad you brought this up, because I feel ashamed that I kind of resent my mother's good energy days when I should feel happy. Then when she goes down again I become so attentive and the resentments melt away. Don't know where this cycle comes from, but it's real. Don't feel embarrassed about it.

There's a thread here where a long time patient (Hondo?) had an aha moment about everything his wife gave up to take care of him through years of treatment. In general, I think men have little idea of what caregiving is all about unless they have to do it.

Hondo

Barbara53 said:

don't feel embarrassed
Thirteen years! How many halos are there hovering over your head?

After all that time, I don't need to remind you that just like the bad times, the good times are usually temporary, too. Stay your course and you will be fine, eventually.

I'm glad you brought this up, because I feel ashamed that I kind of resent my mother's good energy days when I should feel happy. Then when she goes down again I become so attentive and the resentments melt away. Don't know where this cycle comes from, but it's real. Don't feel embarrassed about it.

There's a thread here where a long time patient (Hondo?) had an aha moment about everything his wife gave up to take care of him through years of treatment. In general, I think men have little idea of what caregiving is all about unless they have to do it.

Caregivers
I tip my hat to all of you who are caregivers. As Barbara said I thought that I was going through hell with my first cancer treatment and maybe I was, but the problem I did not see was that I was putting my wife caregiver in hell and leaving her there. I was a very nice guy but going through treatment changed me so much that all of my children moved out of the house and none of our friends would come over to visit.

I did not understand all of what was going on in my life, and that it was I who was running everyone away from me. That is one reason why I love my wife so much more today then ever because she stayed, she never gave up on me when I needed her most she was there. When my cancer came back the second and third time it was different because I understood the affects of my cancer on her and we decided that we would go through this together, it made a big deferens in our life and we are so much closer together today for it.

Caregivers don’t give up on us; you might be all we have in life. God bless each of you who have set your life apart to take care of us who can not care for ourselves.


Thank you Barbara Thanks you icezam and all other Caregivers

AnnaLeigh

Hondo said:

Caregivers
I tip my hat to all of you who are caregivers. As Barbara said I thought that I was going through hell with my first cancer treatment and maybe I was, but the problem I did not see was that I was putting my wife caregiver in hell and leaving her there. I was a very nice guy but going through treatment changed me so much that all of my children moved out of the house and none of our friends would come over to visit.

I did not understand all of what was going on in my life, and that it was I who was running everyone away from me. That is one reason why I love my wife so much more today then ever because she stayed, she never gave up on me when I needed her most she was there. When my cancer came back the second and third time it was different because I understood the affects of my cancer on her and we decided that we would go through this together, it made a big deferens in our life and we are so much closer together today for it.

Caregivers don’t give up on us; you might be all we have in life. God bless each of you who have set your life apart to take care of us who can not care for ourselves.


Thank you Barbara Thanks you icezam and all other Caregivers

Thank You Hondo
Thank you for understanding that caregivers experience such a drastic change in their lives also. Right along with the loved one they are caring for. In my experience, the majority of the frustration comes from have to WATCH the awful times my husband must endure and not being able to CHANGE anything on a permanent basis. I can only ease the symptoms and hope the treatments and his body will do the rest.

None of us were prepared for this experience and none of us received our instruction manuals with all of the answers after diagnosis.

We all do the best we know how to do - cancer patients as well as caregivers.

See my post called - The Perfect Storm !!!!!!!!.

Best wishes to all who sail with us and among us.

AnnaLeigh

grandmafay

icezam19 said:

roller coaster ride
I am 59 years old. My husband has had cancer for 13 years. Recently, the doctor told me that our current chemo is only palliative. My husband lost 30 pounds and was on lots of pain pills which made him sleep and he did not interact with me very often. I adjusted to this and found ways to cope as he was pretty cranky and very withdrawn. Now, out of nowhere...for the last 5 days, he is taking a turn for the better and acting more normal.

Remember, I have been his caretaker for 13 years.............up and down, good and bad.
This time, I am frustrated by his "return to my world" because he is taking up right where he left off. Problem is............I had to adapt to his recent downtime and re-structured many things. Now he is "un-doing" things and doesn't realize that this is a strain on me. I am so embarassed to write about this as I know I should be rejoicing. Frankly, my head is spinning and the constant up and down pace is maddening. I just want a little peace and maybe just a teeny tiny focus on me for one second.

I spent all of the last 13 years focusing on my husband and I thought there would be time for me when he was gone and I was grieving. So I postponed "me time." After all, the dear man is dying. How dare I make it "about me." Again I am so embarassed to post this. I DO LOVE HIM but I am getting weary.

Caregiving
I was my husband's caregiver for 6 years. I can't imagine doing it for 13 years. I was exhausted when my husband passed away. Please, don't feel guilty about any of the feelings you are having. I think they are pretty normal whatever that is. When I shared some of those thoughts and feelings with my husband, I told him how guilty I felt. He really set me straight. He always said I was in a tougher job as caregiver than he was patient. I even felt guilty about trying to be sure that I knew where everything was that I would need when he was gone. As much as I didn't want to think about that time, I did. I think that is just human nature. Take care. Also have you called hospice? That's a hard move to make, too, but they really do help. Most even allow you to receive palliative care now, and prefer that you contact them early. Fay

endiman

I know this posting is late but it's been over a year since I lost my wife to cancer and haven't been able to face some of these issues. It was a long three year battle. I went through the same thing you did. Seven months after we discovered my wife's cancer and got her stabilized on treatment, I felt I needed to go to India where we support an orphanage of 500 kids. Although my wife was supportive, it was different when I got back. I've since come to learn that fighting cancer is the only thing that really matters in a cancer victim's life and any other activities that doesn't directly support that effort is considered not really caring or letting the cancer victim down. I wanted to take my wife on short vacations or anything to get away and have a glimpse of prior normalcy as the stress of being her caretaker, earning a living, worrying about insurance and bills really took it's toll on my both physically and mentally. She wasn't willing to do anything until she won her battle with cancer. Sad to say we never got our chance.

Hang in there. She needs whatever you can give her and I know what you're going through.

luz del lago

endiman said:

I know this posting is late but it's been over a year since I lost my wife to cancer and haven't been able to face some of these issues. It was a long three year battle. I went through the same thing you did. Seven months after we discovered my wife's cancer and got her stabilized on treatment, I felt I needed to go to India where we support an orphanage of 500 kids. Although my wife was supportive, it was different when I got back. I've since come to learn that fighting cancer is the only thing that really matters in a cancer victim's life and any other activities that doesn't directly support that effort is considered not really caring or letting the cancer victim down. I wanted to take my wife on short vacations or anything to get away and have a glimpse of prior normalcy as the stress of being her caretaker, earning a living, worrying about insurance and bills really took it's toll on my both physically and mentally. She wasn't willing to do anything until she won her battle with cancer. Sad to say we never got our chance.

Hang in there. She needs whatever you can give her and I know what you're going through.

So I'm not alone
My husband was diagnosed with sc lung cancer this last April. It hit me hard. I guess the shock period is over and the fighting to defeat this has begun. He has had 4 rounds of chemo and has shown a 50% reduction in the cancer cells in his lung, liver and lymph nodes. For this I am extremely grateful to God and my husband for having such a positive attitude! I am also grateful that he tolerated the chemo so well. We were told about the fatigue, nausea and "chemo" brain side effects.
I remember the day that we were told, all I wanted to do was take his hand and run out of the doctors office and start making the most of the time they said he had left! But before we left the hospital, we were handed a stack of appointments, for scans, for MRIs, for labs, for chemo... I've adjusted to that and realized that in order to get any of that time, all of these things had to happen.
At this time we are waiting for his next scan to see how well the chemo worked this last time, and his doctor told him that this may be the last round for now, and if the scan shows good results, he may be looking at whole brain radiation. Another scary thing!
When this all began, I told him that I would be with him every step of the way. We have been married for 29 years. I've spent every minute of everyday with him, loving him, encouraging him, telling him that his bald head is sexy! I do everything inside and outside of the house. I've sat for 8 hrs next to him through his 3 day cycles of chemo, because he asked me to. So you may ask, what's the problem? It's not easy giving all of yourself and very rarely getting affection, caring, concern from the person that you would give your life up for. When I see him having conversations with the other ladies in the chemo lab, he doesn't have "chemo" brain, but he can't remember something I may have asked of him. He doesn't have "chemo" brain when it comes to baseball stats and who won the Nascar race. I fell a week ago, and hurt my side and ribs where I could hardly sit, stand or lay down, but could not go to be seen since his chemo cycle was beginning. We discussed perhaps going one day after his treatment, but when his treatment was over, all he could think about was where we were going for lunch. I know, I know, my therapist says that I have to take care of myself. It just would be nice to see or feel some caring from him once in a while.
Anyway, just wanted to thank you all for discussing your feelings. You would not believe how long it took me to find a blog or discussion board that addressed this topic! Every site was about and for the cancer patient, or detailed what we as caregivers, must do. I am looking into attending a local support group. I don't want to have this guilty feeling, and I want to be there for my husband.
My prayers go out to all of you.

grandmafay

luz del lago said:

So I'm not alone
My husband was diagnosed with sc lung cancer this last April. It hit me hard. I guess the shock period is over and the fighting to defeat this has begun. He has had 4 rounds of chemo and has shown a 50% reduction in the cancer cells in his lung, liver and lymph nodes. For this I am extremely grateful to God and my husband for having such a positive attitude! I am also grateful that he tolerated the chemo so well. We were told about the fatigue, nausea and "chemo" brain side effects.
I remember the day that we were told, all I wanted to do was take his hand and run out of the doctors office and start making the most of the time they said he had left! But before we left the hospital, we were handed a stack of appointments, for scans, for MRIs, for labs, for chemo... I've adjusted to that and realized that in order to get any of that time, all of these things had to happen.
At this time we are waiting for his next scan to see how well the chemo worked this last time, and his doctor told him that this may be the last round for now, and if the scan shows good results, he may be looking at whole brain radiation. Another scary thing!
When this all began, I told him that I would be with him every step of the way. We have been married for 29 years. I've spent every minute of everyday with him, loving him, encouraging him, telling him that his bald head is sexy! I do everything inside and outside of the house. I've sat for 8 hrs next to him through his 3 day cycles of chemo, because he asked me to. So you may ask, what's the problem? It's not easy giving all of yourself and very rarely getting affection, caring, concern from the person that you would give your life up for. When I see him having conversations with the other ladies in the chemo lab, he doesn't have "chemo" brain, but he can't remember something I may have asked of him. He doesn't have "chemo" brain when it comes to baseball stats and who won the Nascar race. I fell a week ago, and hurt my side and ribs where I could hardly sit, stand or lay down, but could not go to be seen since his chemo cycle was beginning. We discussed perhaps going one day after his treatment, but when his treatment was over, all he could think about was where we were going for lunch. I know, I know, my therapist says that I have to take care of myself. It just would be nice to see or feel some caring from him once in a while.
Anyway, just wanted to thank you all for discussing your feelings. You would not believe how long it took me to find a blog or discussion board that addressed this topic! Every site was about and for the cancer patient, or detailed what we as caregivers, must do. I am looking into attending a local support group. I don't want to have this guilty feeling, and I want to be there for my husband.
My prayers go out to all of you.

Not Alone
No, you are not alone! Many here have been or are going through many of the things you mention. All I can tell you is what you already know. This is hard. My husband often said that it was harder on me than on him. I don't know that theat is true, but it is tough. Hang in there. It sounds like your fight is just beginning. Take care, Fay

lilli1020

luz del lago said:

So I'm not alone
My husband was diagnosed with sc lung cancer this last April. It hit me hard. I guess the shock period is over and the fighting to defeat this has begun. He has had 4 rounds of chemo and has shown a 50% reduction in the cancer cells in his lung, liver and lymph nodes. For this I am extremely grateful to God and my husband for having such a positive attitude! I am also grateful that he tolerated the chemo so well. We were told about the fatigue, nausea and "chemo" brain side effects.
I remember the day that we were told, all I wanted to do was take his hand and run out of the doctors office and start making the most of the time they said he had left! But before we left the hospital, we were handed a stack of appointments, for scans, for MRIs, for labs, for chemo... I've adjusted to that and realized that in order to get any of that time, all of these things had to happen.
At this time we are waiting for his next scan to see how well the chemo worked this last time, and his doctor told him that this may be the last round for now, and if the scan shows good results, he may be looking at whole brain radiation. Another scary thing!
When this all began, I told him that I would be with him every step of the way. We have been married for 29 years. I've spent every minute of everyday with him, loving him, encouraging him, telling him that his bald head is sexy! I do everything inside and outside of the house. I've sat for 8 hrs next to him through his 3 day cycles of chemo, because he asked me to. So you may ask, what's the problem? It's not easy giving all of yourself and very rarely getting affection, caring, concern from the person that you would give your life up for. When I see him having conversations with the other ladies in the chemo lab, he doesn't have "chemo" brain, but he can't remember something I may have asked of him. He doesn't have "chemo" brain when it comes to baseball stats and who won the Nascar race. I fell a week ago, and hurt my side and ribs where I could hardly sit, stand or lay down, but could not go to be seen since his chemo cycle was beginning. We discussed perhaps going one day after his treatment, but when his treatment was over, all he could think about was where we were going for lunch. I know, I know, my therapist says that I have to take care of myself. It just would be nice to see or feel some caring from him once in a while.
Anyway, just wanted to thank you all for discussing your feelings. You would not believe how long it took me to find a blog or discussion board that addressed this topic! Every site was about and for the cancer patient, or detailed what we as caregivers, must do. I am looking into attending a local support group. I don't want to have this guilty feeling, and I want to be there for my husband.
My prayers go out to all of you.

I hear you loud and clear
I hear you loud and clear hon....Do I ever get a thank you??? NO. Does he talk to me about whats going on inside of his head, or ask me about my thoughts? NO. Does he take his frustrations out on me? YES. Did something taste good to him that I slaved over because he wanted it? NO.

But I dont have terminal cancer, pain, no appetite, depression, fear of dying, no energy, no muscle mass and I don't have to depend on someone for everything these days.

Yeah, I get selfish and the :OOOO poooor meeee" sometimes, but when I tell him I love him and hold his hand, he does too. He is the one who may never see his beautiful daughter get married, never see his grandchildren, may not even see another beautiful fall or ski down a snowy slope again. He feels inferior that he can hardly walk to the bathroom, much less pay a bill with his medicated mind, or talk to the creditors or take the car for an oil change or take the garbage out to the road...bla bla bla....I am rambling.
When I begin to feel slighted, I put myself in his shoes, and then I dont feel as bad as I did. Then I pray for stength, healing, peace of mind, and my family...and my sanity.
Its the only thing that gets me through....God is always listening!

Bless all of you and take care of you!!!
Gayle

zinniemay

lilli1020 said:

I hear you loud and clear
I hear you loud and clear hon....Do I ever get a thank you??? NO. Does he talk to me about whats going on inside of his head, or ask me about my thoughts? NO. Does he take his frustrations out on me? YES. Did something taste good to him that I slaved over because he wanted it? NO.

But I dont have terminal cancer, pain, no appetite, depression, fear of dying, no energy, no muscle mass and I don't have to depend on someone for everything these days.

Yeah, I get selfish and the :OOOO poooor meeee" sometimes, but when I tell him I love him and hold his hand, he does too. He is the one who may never see his beautiful daughter get married, never see his grandchildren, may not even see another beautiful fall or ski down a snowy slope again. He feels inferior that he can hardly walk to the bathroom, much less pay a bill with his medicated mind, or talk to the creditors or take the car for an oil change or take the garbage out to the road...bla bla bla....I am rambling.
When I begin to feel slighted, I put myself in his shoes, and then I dont feel as bad as I did. Then I pray for stength, healing, peace of mind, and my family...and my sanity.
Its the only thing that gets me through....God is always listening!

Bless all of you and take care of you!!!
Gayle

Gayle
I could not have said it better, even when he yells or does not like something I know he has other things on his mind. I know when is insults something , it is himself. I know he wonders what I will do when he is gone, He wonders what if everyday and I would bet every minute. So I know his yells are not at me . I just look at him and remeber the man I love it still there. That if ever he needed someone to love him , he surely need me now. I am not saying it does not hurt or sting a little . But I will be here to get over it. Right now I want to do everything I can for him it that means getting up one more time to see if he needs anything so be it. I took him for better or worse and I would like to keep him.
I do what I think is right so IF the day comes I will not have to question did I do the right thing? Or I should have. That is what love is isn't it?

bsn

Its a lot to figure out...I
Its a lot to figure out...I think they have to be angry somewhat at us for not being the sick one, for not understanding 100./. what they are going through. Some wise people have said "its never enough" and I think that sums it up. My husband is on his 52nd month of a 12 month survival prognosis (grade 3/4 bifrontal brain tumor)...no matter what I do (take on more home burden, find clinical trials, maintain an update website...) its never enough because, the cancer is still there. Please take care of yourself, no one else is going to..wish I'd figured that out sooner!

bsn

icezam19 said:

roller coaster ride
I am 59 years old. My husband has had cancer for 13 years. Recently, the doctor told me that our current chemo is only palliative. My husband lost 30 pounds and was on lots of pain pills which made him sleep and he did not interact with me very often. I adjusted to this and found ways to cope as he was pretty cranky and very withdrawn. Now, out of nowhere...for the last 5 days, he is taking a turn for the better and acting more normal.

Remember, I have been his caretaker for 13 years.............up and down, good and bad.
This time, I am frustrated by his "return to my world" because he is taking up right where he left off. Problem is............I had to adapt to his recent downtime and re-structured many things. Now he is "un-doing" things and doesn't realize that this is a strain on me. I am so embarassed to write about this as I know I should be rejoicing. Frankly, my head is spinning and the constant up and down pace is maddening. I just want a little peace and maybe just a teeny tiny focus on me for one second.

I spent all of the last 13 years focusing on my husband and I thought there would be time for me when he was gone and I was grieving. So I postponed "me time." After all, the dear man is dying. How dare I make it "about me." Again I am so embarassed to post this. I DO LOVE HIM but I am getting weary.

my wish for you
I wish I could take away your sadness and pain and guilt, just for a day. I too wish sometimes something, sometime could be about me. I'm tired of feeling guilty, bitter and tired and I've only been at this for four years 3 months! Do something for yourself, really!