How do spouses keep from falling apart?

CaliGal2012
CaliGal2012 Member Posts: 9
in Caregivers #1
Married only 2 yrs
Husband just had major colon surgery. They call it HIPEC. In hospital 1 month.
Thought they had got it all but just this week his CEA has gone up to 21. I'm told by nurse not to be concerned but how do I NOT be concerned. How do I live and breath each day knowing he is sick? They tell us there is no real cure best to hope for is remission.
I watch him sleep at night. I maybe get three hours sleep and have full time job.
How do people do this long term.

Comments

  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #2
    Living With This
    I lost my husband after a six year battle with colon cancer in Oct. 2009. We were told treatable, not curable and life shortening. The literature at the time said 22 month was the average survival. So we felt blessed with the six years. Doug decided that if he was just buying time that he would buy as much as possible. Somewhere on these boards is an old spot where we commented on stupid things people say to us. Maybe we should start a new one. On the top of the list would be don't worry or don't be concerned. Excuse me? Of course you are concerned! Who wouldn't be? You are facing your greatest fear of losing the most important person in your life. You had planned to grow old together and still may, but this is really scary. I did face my greatest fear, and it's hard. One thing I learned, though, was to cherish the now. You don't know what the future holds, but none of us do. They are finding new and innovative treatments. Sure, the odds are against you, but hope is there, too. How do we survive this long-term? Hope, faith, and a sense of humor helped us. We were blessed with a strong support system of family, friends, and church family. When Doug felt ok, we made memories together. We laughed together and cried together. We talked about his greatest fear which was leaving me to deal with life alone. I told him I was a strong, independent woman and would be ok. Now I'm trying to live up to that. I think I am doing well. That doesn't mean that I am through grieving. The pain is mellowing now somewhat. Just hug your husband and tell him you love him often. Some of my best memories are from those last 6 years. Hang in there. Hugs, Fay
  • CaliGal2012
    CaliGal2012 Member Posts: 9
    #3
    grandmafay said:

    Living With This
    I lost my husband after a six year battle with colon cancer in Oct. 2009. We were told treatable, not curable and life shortening. The literature at the time said 22 month was the average survival. So we felt blessed with the six years. Doug decided that if he was just buying time that he would buy as much as possible. Somewhere on these boards is an old spot where we commented on stupid things people say to us. Maybe we should start a new one. On the top of the list would be don't worry or don't be concerned. Excuse me? Of course you are concerned! Who wouldn't be? You are facing your greatest fear of losing the most important person in your life. You had planned to grow old together and still may, but this is really scary. I did face my greatest fear, and it's hard. One thing I learned, though, was to cherish the now. You don't know what the future holds, but none of us do. They are finding new and innovative treatments. Sure, the odds are against you, but hope is there, too. How do we survive this long-term? Hope, faith, and a sense of humor helped us. We were blessed with a strong support system of family, friends, and church family. When Doug felt ok, we made memories together. We laughed together and cried together. We talked about his greatest fear which was leaving me to deal with life alone. I told him I was a strong, independent woman and would be ok. Now I'm trying to live up to that. I think I am doing well. That doesn't mean that I am through grieving. The pain is mellowing now somewhat. Just hug your husband and tell him you love him often. Some of my best memories are from those last 6 years. Hang in there. Hugs, Fay

    Thanks so much Fay.
    Yes I
    Thanks so much Fay.
    Yes I agree we should start that "Things People Say"
    sometimes I'm in shock by how they respond. My husband doesn't talk much about it I'm sure it's because he's scared but I wish he would. I just booked a trip for us in September and he loves having something to look forward to in the future. I thank god for each and every day with him but yes the thought of being alone scars me to death right now.
    Thanks for the kind words
    Dawn
  • Suzi_cue1961
    Suzi_cue1961 Member Posts: 17
    #4
    One day at a time
    I am new to this forum. I honestly didnot know about this one. I have been on another forum but was not impressed. My husband has been diagnosed since Dec 2007. And I can promise you I have dealing issues everyday of my life. I know this is hard for me, it is even harder to imagine what he is going thru. We have been married for 26 years and we have 6 children together and 10 grandchildren. We do have a close family but as the mom of the house and the caregiver it's very hard to always talk to my children. Sometimes, I feel like they want me to be strong and believe in my faith to get us through. But sometimes they do understand that I am human and I can break. I do have a very good friend but just found out a while back she has ovarian cancer. So she has her own demons to deal with. So I try hard not to trouble her when I am having a really bad day. That is what makes this all so hard. My husband having Pancreatic Neuroendocrine (Islet cell) and my best friend having ovarian cancer. My husband is on disability and I do work so we can have insurance. I have two left at home so I am also having to be strong for them. My husband goes thru anger issues because it seems like every time he gets a report of it not growing then within a few months it has started up again. I do feel he has depression. I have spoken to him about this and to his physician. But until he wants the help their hands are tied. He pretty much stays in the bed most of the day. It depends on if I can motivate him to get up. He has gone thru chemo, trial drugs, sir spheres, Embolization, surgery. We r now about to start a new approved FDA drug called Sutent. Not sure what to expect. All I can do is pray that God guides us through. Because of my husbands condition he has to stay near a bathroom or he has in controllable gas. So he has chosen not to go with me to church. It is very hard to attend without him. Because I feel so alone. Even though I know I am not alone. People don't know what to say to you. Because they don't want to hurt you in anyway. All I can say is trust that God has a plan and ask him to continue to give you the courage ad strength you need to deal with this dreadful disease. People always say "you r such a strong person" all I can say is that I have to put one foot in front of the other because of my husband and my kids.
    Thanks for listening.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #5
    Suzi_cue1961 said:

    One day at a time
    I am new to this forum. I honestly didnot know about this one. I have been on another forum but was not impressed. My husband has been diagnosed since Dec 2007. And I can promise you I have dealing issues everyday of my life. I know this is hard for me, it is even harder to imagine what he is going thru. We have been married for 26 years and we have 6 children together and 10 grandchildren. We do have a close family but as the mom of the house and the caregiver it's very hard to always talk to my children. Sometimes, I feel like they want me to be strong and believe in my faith to get us through. But sometimes they do understand that I am human and I can break. I do have a very good friend but just found out a while back she has ovarian cancer. So she has her own demons to deal with. So I try hard not to trouble her when I am having a really bad day. That is what makes this all so hard. My husband having Pancreatic Neuroendocrine (Islet cell) and my best friend having ovarian cancer. My husband is on disability and I do work so we can have insurance. I have two left at home so I am also having to be strong for them. My husband goes thru anger issues because it seems like every time he gets a report of it not growing then within a few months it has started up again. I do feel he has depression. I have spoken to him about this and to his physician. But until he wants the help their hands are tied. He pretty much stays in the bed most of the day. It depends on if I can motivate him to get up. He has gone thru chemo, trial drugs, sir spheres, Embolization, surgery. We r now about to start a new approved FDA drug called Sutent. Not sure what to expect. All I can do is pray that God guides us through. Because of my husbands condition he has to stay near a bathroom or he has in controllable gas. So he has chosen not to go with me to church. It is very hard to attend without him. Because I feel so alone. Even though I know I am not alone. People don't know what to say to you. Because they don't want to hurt you in anyway. All I can say is trust that God has a plan and ask him to continue to give you the courage ad strength you need to deal with this dreadful disease. People always say "you r such a strong person" all I can say is that I have to put one foot in front of the other because of my husband and my kids.
    Thanks for listening.

    Strength
    I got very tired of people telling me how strong I was. Yes, we do find strength when we most need it. But, yes, we are human and it is ok to let go at times. The hardest thing for me was not going to church alone but going to a memorial service alone. My husband did go with me whenever he could. Both of you are going through a grieving process, grieving for the life you planned. Cancer changes everything. It makes us focus on the mortality of the most important person in our life. Somehow, we do hold it together most of the time. We do it for our spouse, our children, and our grandchildren. It sounds like you have a strong faith as I do. It helped us. Our church family was there for us. We felt their prayers. We were blessed that they weren't afraid to talk to us, and we kept them updated on what was happening. They traveled the journey with us. Hang in there. Nobody promised us that life would be fair or easy. Blessings, Fay
  • Suzi_cue1961
    Suzi_cue1961 Member Posts: 17
    #6
    grandmafay said:

    Strength
    I got very tired of people telling me how strong I was. Yes, we do find strength when we most need it. But, yes, we are human and it is ok to let go at times. The hardest thing for me was not going to church alone but going to a memorial service alone. My husband did go with me whenever he could. Both of you are going through a grieving process, grieving for the life you planned. Cancer changes everything. It makes us focus on the mortality of the most important person in our life. Somehow, we do hold it together most of the time. We do it for our spouse, our children, and our grandchildren. It sounds like you have a strong faith as I do. It helped us. Our church family was there for us. We felt their prayers. We were blessed that they weren't afraid to talk to us, and we kept them updated on what was happening. They traveled the journey with us. Hang in there. Nobody promised us that life would be fair or easy. Blessings, Fay

    Thanks
    Thank you Fay!!! You seem to be very strong urself. I appreciate the kind words.
    Prayers for you Suzi_cue
  • damageddude
    damageddude Member Posts: 2
    #7
    Supportive husband
    My wife and I are 44/41 respectively. She was diagnosed with breast cancer in May, had a lumpectomy in June (Stage I), and began chemotherapy in July (tumor was aggressive). Since then, even though her prognosis is very good, my life and our marriage seem to have fallen apart.

    Every horrible thing that she perceives I have done in the almost 20 years since we started dating has come out and she wants a divorce -- NOW! I have taken so many body blows that I have become punch drunk. I have been wondering if I will still be married this time next year.

    Some of her accusations totally blindsided me. I had no idea she had been so unhappy for so long. She told me she had been willing to float along but, since her diagnosis, that has changed. And a part of me, while devastated, can accept that -- she now sees that her life can end much sooner then expected and she doesn't want to waste time in an unhappy relationship. And another part of me could accept that is I had been aware that she was so upset for so long.

    The "funny thing" is that, because I am still standing by my wife, in part because we have two young children and in part because deep down I want to believe that we still love each other and that the stress of what has happened and is happening to her is causing all this, everybody sees me as the supportive husband. Ha!. If they only knew how much I am dying inside as I contemplate the end of our marriage. I have been feeling very sad and lonely. I began to understand how Newt Gingrich could ask his wife for a divorce while she was fighting cancer.

    You ask how couples get through this and I wish I had an answer. I've been put on an anti-depressant by my primary care doctor and, on the advice of others who have been down the same road (or had relatives who had similar experiences), have spoken with a therapist.

    I realize that part of my wife's anger is just her venting, although some is legitimate. She is mad and hurt. Many of the things angering her about me stem from a long time ago that we let fester for too long. I don't know if our marriage will ultimately survive this, I do love her and want her to live long and prosper, hopefully with me but if not, then that will be my loss. So no matter what happens, I at least hope to become a better man, husband (hopefully) and father when this is all over.
  • Tubbs
    Tubbs Member Posts: 51
    #8
    I've been dealing with my
    I've been dealing with my wife's brain cancer for 5 years. After laying dormant, it acted up again at the new year. I didn't think there would by anything more difficult then the original diagnosis. Now, I'm living in a cloud as I watch her struggle just to walk. About an hour ago, she fell in the bathroom, where she's been back and forth from tonight because all the meds are messing up her stomach.

    I am spent. It's hard. I have so many things I'm stressed over: phone calls I haven't returned, neglecting family functions because I'm afraid my wife will want to leave immediately upon arrival, worry about my wife falling down the short set of stairs if I'm not escorting her, worry that my wife will have incontinence issues during a short trip to the store (which happened today)...on and on it goes. I can't leave her alone. I would never get over the guilt if something happened to her.

    She's 41, but I feel like I'm married to an elderly woman who I was meant to grow old with. How do I do it? I don't know. It's hard. And then you wake up the next morning and get up and do it again.
  • leprechaun2
    leprechaun2 Member Posts: 79
    #9
    Tubbs said:

    I've been dealing with my
    I've been dealing with my wife's brain cancer for 5 years. After laying dormant, it acted up again at the new year. I didn't think there would by anything more difficult then the original diagnosis. Now, I'm living in a cloud as I watch her struggle just to walk. About an hour ago, she fell in the bathroom, where she's been back and forth from tonight because all the meds are messing up her stomach.

    I am spent. It's hard. I have so many things I'm stressed over: phone calls I haven't returned, neglecting family functions because I'm afraid my wife will want to leave immediately upon arrival, worry about my wife falling down the short set of stairs if I'm not escorting her, worry that my wife will have incontinence issues during a short trip to the store (which happened today)...on and on it goes. I can't leave her alone. I would never get over the guilt if something happened to her.

    She's 41, but I feel like I'm married to an elderly woman who I was meant to grow old with. How do I do it? I don't know. It's hard. And then you wake up the next morning and get up and do it again.

    Tubbs, I am so sorry that
    Tubbs, I am so sorry that the beast is back. My husband's new tumor grew while he was still taking his chemo for the first two. We were expecting good news and ended up starting whole brain radiation the next day.

    From all his treatments, he developed incontinence, gait changes( he would fall down about 8 times a say, even with the use of a walker.) and confusion. I thought that nothing could be done about any of these things as we had been warned they might occur after his treatments. But through sheer exhaustion, when I could no longer care for him at home, I told the doc I would not bring him home from a regular appt if he didn't have some kind of help for me. A spinal tap was done - and he was put in a rehab senter for pt. It was a miracle - the confusion was gone, he could walk without the walker and without falls! And he was dry thoroughout the night! Normal pressure hydrocephalous is the term for it - and a shunt was put in on July 5. THe difference is incredible!

    I don't know if your wife's changes are due to this or not but I hope it helps you to know you aren't alone in facing these challenges.


    A friend put generic updates about her husband's cancer battle on her answering machine when she didn't have time to get back to people. Is there a neighbor or friend or someone from the opposite side of the family who can keep her company when you visit family and she is not up to it?

    Our fight agains brain cancer has been going on since June of 08, when my husband was 53 and I was 47. I told him he was not allowed to make me a widow then. We are still fighting, but since his transplant he has been clear of cancer, now it is the side effects we fight.

    It is not the life I had planned for us either. Sometimes he seems like he is 95, other times 5, and at some wonderful moments, he is himself at 57. I latch onto those times when they are here, I gain comfort from holding him in the night and waking up next to him. I keep grasp of my sanity by having a companion for him once or twice a week so I can either be social with friends or get errands done. My own therapy is early in the morning before he wakes up. And this community on-line as well as ABTA has been a great source of advice and counsel for me. And prayer helps too.

    Keep in touch if you can and take care of yourself as well as her when it's possible.
  • Tubbs
    Tubbs Member Posts: 51
    #10
    leprechaun2 said:

    Tubbs, I am so sorry that
    Tubbs, I am so sorry that the beast is back. My husband's new tumor grew while he was still taking his chemo for the first two. We were expecting good news and ended up starting whole brain radiation the next day.

    From all his treatments, he developed incontinence, gait changes( he would fall down about 8 times a say, even with the use of a walker.) and confusion. I thought that nothing could be done about any of these things as we had been warned they might occur after his treatments. But through sheer exhaustion, when I could no longer care for him at home, I told the doc I would not bring him home from a regular appt if he didn't have some kind of help for me. A spinal tap was done - and he was put in a rehab senter for pt. It was a miracle - the confusion was gone, he could walk without the walker and without falls! And he was dry thoroughout the night! Normal pressure hydrocephalous is the term for it - and a shunt was put in on July 5. THe difference is incredible!

    I don't know if your wife's changes are due to this or not but I hope it helps you to know you aren't alone in facing these challenges.


    A friend put generic updates about her husband's cancer battle on her answering machine when she didn't have time to get back to people. Is there a neighbor or friend or someone from the opposite side of the family who can keep her company when you visit family and she is not up to it?

    Our fight agains brain cancer has been going on since June of 08, when my husband was 53 and I was 47. I told him he was not allowed to make me a widow then. We are still fighting, but since his transplant he has been clear of cancer, now it is the side effects we fight.

    It is not the life I had planned for us either. Sometimes he seems like he is 95, other times 5, and at some wonderful moments, he is himself at 57. I latch onto those times when they are here, I gain comfort from holding him in the night and waking up next to him. I keep grasp of my sanity by having a companion for him once or twice a week so I can either be social with friends or get errands done. My own therapy is early in the morning before he wakes up. And this community on-line as well as ABTA has been a great source of advice and counsel for me. And prayer helps too.

    Keep in touch if you can and take care of yourself as well as her when it's possible.

    Thanks, Leprechaun. What is
    Thanks, Leprechaun. What is ABTA? American Brain Tumor Assn? Do they have a forum? I will ask the docs about a stent, but I doubt it will help in my wife's situation. She has a tumor on her brain stem which is affecting her balance and walking. She's going in for radiation on it soon, and the radiation oncologist thinks she will see immediate improvement. My fingers are crossed. Each day she gets a little bit deeper in depression. I can see the look in her eyes that tells me she is wondering how long she will live. It's just all so sad and unfair, isn't it?
  • leprechaun2
    leprechaun2 Member Posts: 79
    #11
    Tubbs said:

    Thanks, Leprechaun. What is
    Thanks, Leprechaun. What is ABTA? American Brain Tumor Assn? Do they have a forum? I will ask the docs about a stent, but I doubt it will help in my wife's situation. She has a tumor on her brain stem which is affecting her balance and walking. She's going in for radiation on it soon, and the radiation oncologist thinks she will see immediate improvement. My fingers are crossed. Each day she gets a little bit deeper in depression. I can see the look in her eyes that tells me she is wondering how long she will live. It's just all so sad and unfair, isn't it?

    Tubbs,
    YOu are a gentleman
    Tubbs,
    YOu are a gentleman when you say it is so sad and unfair. It is truly horrible to go through for all of us, patient and caregivers alike.

    I hope her radiation goes well. Hub had 5 weeks of whole brain and at the end of the five weeks, he was sleeping 20 hrs a day. Yes, really 20! A med called provigil gave him 10 hrs of wakefulness and really helped us have time together. We did cognitive therapy too to help him focus and work on short term memory gaps.

    He lost taste for a whle but it did come back and at times he had problems with ringing in his ears but that stopped to after about 6 months.

    The American Brain Tumor Association has an email set up. Once you identify yourself to them, you will receive a daily email of questions/news/comments that caregivers have. I am able to respond to the writer individually or to all on the list. There is a matching one for those who have cancer. This has really helped me know I am not alone. I have also gotten many hints from those who travel this road with us. I hope it helps you.


    Hang in there, she is worth it and so are you!

Discussion Boards