Help in dying husband.

ShariVan
ShariVan Member Posts: 5
in Esophageal Cancer #1
Hello,

I am new here. I am my husbands caregiver and he has esophageal cancer. He has been given about a month. We have been through every treatment possible and we are at the end. No more treatments. We would have been married 30 years in September, we married early and he is only 55. We have one son that is 19. This has been the hardest thing in my life. I just can't believe that I will be alone soon.
I am having such problems of finding what to say to him, what can I say? He is keeping to himself and is angry. I can't do or say anything right and it hurts. He does not want to see us sad, that is a big no no with him. He did say to me today that I do not want to know what he is thinking because he is unhappy. I feel so helpless and lost. I do not want him to go angry and not talking to us. I think he is protecting us but I do not want that. I really need him to talk to us. We need him to.
Does anyone have any words of wisdom on this matter? I want so badly to comfort him,but he seems to want us to stay away from him. It hurts.

I am so upset.

Comments

  • chrissiebass
    chrissiebass Member Posts: 56
    #2
    ShariVan
    I wish I had words
    ShariVan

    I wish I had words of wisdom for you at this hard time. I can only say that my heart is aching for you and your son right now. I am sure someone else will post some wisdom, as I am still relatively new to this. You and your son are in my thoughts and prayers.
  • ShariVan
    ShariVan Member Posts: 5
    #3
    chrissiebass said:

    ShariVan
    I wish I had words
    ShariVan

    I wish I had words of wisdom for you at this hard time. I can only say that my heart is aching for you and your son right now. I am sure someone else will post some wisdom, as I am still relatively new to this. You and your son are in my thoughts and prayers.

    Thank you
    Thank you for your prayers. We need them. I wish you the best. Shari
  • BMGky
    BMGky Member Posts: 621
    #4
    My heart breaks for your
    My heart breaks for your situation. Do you have hospice services and/or a minister or close associate with whom you can share your grief and thoughts. When my Mother was terminally ill with another disorder, hospice counseled me and gave me support and it was most helpful. I cannot imagine your sadness, anger, your "at a loss" situation. Your husband's anger is understandable as well. There are so many on this site that have dealt with your type of circumstances. You should be hearing from them soon. I am offering prayers for your family's comfort and guidance. A warm hug surrounding you all. Mary
  • tanker sgv
    tanker sgv Member Posts: 124
    #5
    I dont mean to be crass, but
    I dont mean to be crass, but this is HIS journey not yours. When you or your son need him to talk is not his problem. I really don't want to seem rude. What u need to see is he is talking "you don't want to know what I'm thinking right now cause I'm unhappy" the way I have choosen to view that exact statement when I've been told is, he's wants to talk but the words haven't come together in his heart and mind yet. His thoughts are scrambled. I PROMISE he will talk and when he speaks your heart will fill with warmth and your eyes will fill with tears. Only then will it all make scence, and the wait will be well worth it. As for 1month left don't count down the days, count the moments of serenity in each day. Remember when he is in a bad mood don't talk to him! The only thing you will miss out on is getting stressed out or being yelled at, & who needs those memories. I recall when my mom was pissy or angry I would bring her food, meds, say I love you and walk the hell out. The emotion of why she was mad wouldn't last as long when I didn't try to fix her problems. I hope I helped and this will be the hardest thing I hope you ever have to face. You are your families hero! Even thou I don't know you, I feel obligated to say THANK YOU for what you are doing, The greatest honor anyone can achieve in life is helping someone else accept their own death. Your courge is an example of the hearts ability to love what the brain cannot comprehend. Ask or vent ANYTHING, ANYTIME ......
  • fredswilma
    fredswilma Member Posts: 185
    #6
    Sharivan
    I have started this
    Sharivan
    I have started this note to you several times, my heart feels for you, I too am a carer for a stage iv husband so really I do understand, there are few words that will make it better, but for what its worth I am closer to my husband now than ever before because I believe this is our cancer not just his, even though we deal with it differently and our outcomes are different, this horrible disease has affected our entire family. When you know time is short you have to say all the things that sometimes you forget to say in normal life, sometimes the pain is so great that words won't comfort, just being there and holding him can be the biggest comfort. I am so sorry for what you are going through, if there is one thing this site will teach you is you are not alone, I hope your husband opens up to you and you can both celebrate the life you have had together, my thoughts are with you and your family, stay strong.
    Ann
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    Welcome
    Hello Shari to you and your husband and son. You are not alone here. I was a caregiver for my dad. He passed in March 2010 from EC which went to his liver. When it does come to the end....the best thing to do is to be there for each other. Do not waste your time and energy on anger. Communication is key. Tell each other how you feel. Tell each other how much you love one another. Hold hands. Kiss good night. Talk about the good times. Live each of these last days to the fullest. Give your husband your blessing to give up and move on. Go with your gut feelings. No more yelling, no more arguing, no more drs, no more treatments. Time to move onto the next chapter. Let him go. Go to the Kingdom of God. Where there is no pain and no suffering. You will see him again. God made us a promise, and he never breaks his promises. May God grant all of you the strength you will need to get through these next days, weeks, months, years. Keep in touch, we are always here for you. Hugs
    Tina in Va
  • mrsbotch
    mrsbotch Member Posts: 349
    #9
    your husband
    Hi Shari
    I lost my wonderful husband Vince on feb 23, 2011. It has been almost 3 months and it is so hard as we loved each other so much.
    When we knew it was the end we had hospice to help with the pain. All his children came and for 3 days I never left his side except to eat and shower. I could not bear to be without him.
    You husband is so young, mine was 63 a non-smoker, non-drinker and an exercise nut. He did not deserve this horrific cancer, as no one does, but he got it anyway. I can imagine how your husband feels . It is all so senseless, this cancer that some get and some do not. All I can say is to try and cherish every day with him and tell him how much you love him. No matter what he says or does that hurts you its the cancer doing it. Please be good to him and love him with all your heart as you don't want any regrets.

    I am so lost now but hope someday to be able to go on.


    Much love and caring to you Shari. I KNOW how you feel.


    Barb
  • MissF
    MissF Member Posts: 13
    #10
    Sharivan,
    I have no words of
    Sharivan,
    I have no words of wisdom for you that will ease your pain and anxiety. I somewhat know what your feeling as I watch my Mom doing what you are doing. At this point my Dad is considered stage 3 and trying to bounce back from treatment. He has many other underlying health issues in addition to EC.

    Hang in there. I bet your husband is trying to regroup and accept. Maybe he just needs a moment to collect all the floods of emotion and worry he is experiencing. Try to enjoy each day and not watch the calendar. I once had a Dr. tell me and Mom 8 years ago that my Dad was not going to live,then when he amazed the medical team by bouncing back they said "Oh he'll never make it home he will live his life in a nursing home" He came home. My point is Dr's are not God....only He knows when it'll be time.

    I am fairly new here but have very quickly realized that there are many strong, caring and knowledgable people here....visit often.

    Hugs,

    Missi
  • Callaloo
    Callaloo Member Posts: 135
    #11
    TankerSGV makes some good points
    I remember when my father was dying from brain cancer, my dear mother, in a fit of grief, anger and frustration, complained that dad "doesn't even care what I've been going through!"

    I can't help you from the perspective of a caregiver, as I'm the flipside of this coin -- I'm the one who's dying of this disease. I was given a pretty dire prognosis where we thought I only had a short time left. And as much as I love my husband of 35 years, so much of what I was and am experiencing is a very private and solitary thing, that I can't share with him, especially at the darkest moments. There were times when he needed to talk and I didn't want to. I needed him to just back off. I never told him that, but I wanted to, even though he has been my soul mate for my entire adult life.

    I've since gotten a temporary reprieve, and now have the "breathing room" to talk. But I know that when the time comes, it will be my journey, and mine alone. I learned last year that during my worst times, his worries/concerns/fears and mine were not the same. I might have been able to help him feel better, but he could not do the same for me.

    I know that all the caregivers need and deserve tremendous emotional, spiritual and hands-on support, but seek it from someone other than the patient. He doesn't need the added burden.

    Sorry if this doesn't help you, ShariVan. It's tough for everyone.
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator
  • dgsmith
    dgsmith Member Posts: 15
    #13
    So Sorry
    I too am my husbands caregiver, my husband had surgery for esophageal cancer last year, we thought we had turned a corner, but unfortunately it was not to be. My husband was given weeks to months (whatever that means) but we are not prepared to turn in the towel just yet, did some research and decided on the coley's treatment in mexico. It is an alternative treatment with good success rates. I don't know your situation, so I don't know if it would help, but I suggest you research it yourself to see if it might be an option. We are currently receiving the treatment as I write to you.
    God Bless
    Gail
  • dgsmith
    dgsmith Member Posts: 15
    #14
    So Sorry
    I too am my husbands caregiver, my husband had surgery for esophageal cancer last year, we thought we had turned a corner, but unfortunately it was not to be. My husband was given weeks to months (whatever that means) but we are not prepared to turn in the towel just yet, did some research and decided on the coley's treatment in mexico. It is an alternative treatment with good success rates. I don't know your situation, so I don't know if it would help, but I suggest you research it yourself to see if it might be an option. We are currently receiving the treatment as I write to you.
    God Bless
    Gail
  • lindadanis
    lindadanis Member Posts: 235
    #15
    dgsmith said:

    So Sorry
    I too am my husbands caregiver, my husband had surgery for esophageal cancer last year, we thought we had turned a corner, but unfortunately it was not to be. My husband was given weeks to months (whatever that means) but we are not prepared to turn in the towel just yet, did some research and decided on the coley's treatment in mexico. It is an alternative treatment with good success rates. I don't know your situation, so I don't know if it would help, but I suggest you research it yourself to see if it might be an option. We are currently receiving the treatment as I write to you.
    God Bless
    Gail

    So Sad and so Sorry
    You do not know me because I have not written much on this site for a while. I lost my husband, age 56, last September 15, 2010 to stage four. As many of you know my story, I will write a little to you. I was reading your post and I could of written it myself a year ago.
    My husband immediately became bitter, mad, angry and kept himself in his bedroom from the time he was diagnosed which was October 7, 2009 until he passed last September. He came out for doctor's appt's only and then went back upstairs with the door closed. I have one child, age 23, who withdrew from college, to help care for him. He was somewhat nice to her, angry towards me from the beginning to the end. I do not know why some people react this way when they are diagnosed with cancer. We had been married 25 years last year, I did get him out of his room to renew our wedding vows last August, then he retreated again. I remarried this man because I loved him dearly. I had to sit back and realize that this was not the man I was married to all those years, that this horrible cancer had changed him and eventually I found out he had mets to his brain, which he probably had all along, which could of explain why he was acting like this the entire time. I got angry, posted alot on this website, made plenty of friends, and kept praying. I prayed all the time that he would let go of his anger and talk to us which he never did. I has been seven months since his death and I miss him terribly. I also lost my mother nine days after he died so I went through quite a bit. All I can tell you is that it is not your fault-keep talking-keep praying, that is all you can do. Some people are not ready to die, I know that Eddie wasn't ready, he was very, very mad at God. He just couldn't come to terms with his cancer and felt cheated out of the rest of his life. I am in therapy now and have been since he was diagnosed. I am still dealing with all the grief and guilt that I feel. When someone dies like this, it leaves us alone and feeling horrible for quite a while. I am doing better than before, but it is definately one day at a time for me and my daughter.

    I don't know what else to tell you other than I feel so bad for you and your son. it is a horrible place to be, to watch and sit by our loved ones as they suffer. No one can understand this unless they are in your shoes, I understand exactly how you are feeling.
    I will pray for your family and for your husband that you all find some peace in this terrible situation.
    Linda
  • Unknown
    Unknown
    #16
    lindadanis said:

    So Sad and so Sorry
    You do not know me because I have not written much on this site for a while. I lost my husband, age 56, last September 15, 2010 to stage four. As many of you know my story, I will write a little to you. I was reading your post and I could of written it myself a year ago.
    My husband immediately became bitter, mad, angry and kept himself in his bedroom from the time he was diagnosed which was October 7, 2009 until he passed last September. He came out for doctor's appt's only and then went back upstairs with the door closed. I have one child, age 23, who withdrew from college, to help care for him. He was somewhat nice to her, angry towards me from the beginning to the end. I do not know why some people react this way when they are diagnosed with cancer. We had been married 25 years last year, I did get him out of his room to renew our wedding vows last August, then he retreated again. I remarried this man because I loved him dearly. I had to sit back and realize that this was not the man I was married to all those years, that this horrible cancer had changed him and eventually I found out he had mets to his brain, which he probably had all along, which could of explain why he was acting like this the entire time. I got angry, posted alot on this website, made plenty of friends, and kept praying. I prayed all the time that he would let go of his anger and talk to us which he never did. I has been seven months since his death and I miss him terribly. I also lost my mother nine days after he died so I went through quite a bit. All I can tell you is that it is not your fault-keep talking-keep praying, that is all you can do. Some people are not ready to die, I know that Eddie wasn't ready, he was very, very mad at God. He just couldn't come to terms with his cancer and felt cheated out of the rest of his life. I am in therapy now and have been since he was diagnosed. I am still dealing with all the grief and guilt that I feel. When someone dies like this, it leaves us alone and feeling horrible for quite a while. I am doing better than before, but it is definately one day at a time for me and my daughter.

    I don't know what else to tell you other than I feel so bad for you and your son. it is a horrible place to be, to watch and sit by our loved ones as they suffer. No one can understand this unless they are in your shoes, I understand exactly how you are feeling.
    I will pray for your family and for your husband that you all find some peace in this terrible situation.
    Linda

    This comment has been removed by the Moderator
  • sal314
    sal314 Member Posts: 599 Member
    #17
    So, So Sorry
    that you are going through this. I lost my father in Feb. to EC. I and my mother know how frustrating it is to love someone and have them unable to talk about what's going on. My father refused to talk about ANYTHING. It was extremely stressful on my mother, who was his caregiver. When he was first diagnosed, he said just wanted to fight it and "go on with life as normal." Well, he pretty much did that. When my mom would try to bring up subjects, like finances or asking how he was feeling, he got so angry and just didn't answer. For whatever reason, he just couldn't go there...or wouldn't go there with anyone.

    I wish I had some great advice to give. I guess I would just say to you...say what's on your heart to him while he's still here. The last thing you want is to feel regret for not saying what you knew in your heart you wanted to say to him. Once things start sliding downhill, there's no going back.

    From what I've read about the topic, it's very common for people to pull away and be angry. Especially to the ones that are closest to them. I also believe that as the disease progresses, people's personalities change. So, if your husband starts acting out of his normal character, try to remember it's the illness and not him and give him grace.

    I don't know that there is any simple answer as to how to get people to open up when it's something they just don't want to do. Maybe talking to a counselor would help? I know many cancer centers now days have free counseling services for the patient and their families. My father was given all the information available to him, but said he didn't want to do any of it. Ugh.

    Anyway, just being able to talk about it on this site will be helpful to you. I found so much support, prayer and genuine care on this site. It helped me so very much.

    Will keep you and your family in my prayers.

    Blessings,
    Sally
  • ShariVan
    ShariVan Member Posts: 5
    #18
    tanker sgv said:

    I dont mean to be crass, but
    I dont mean to be crass, but this is HIS journey not yours. When you or your son need him to talk is not his problem. I really don't want to seem rude. What u need to see is he is talking "you don't want to know what I'm thinking right now cause I'm unhappy" the way I have choosen to view that exact statement when I've been told is, he's wants to talk but the words haven't come together in his heart and mind yet. His thoughts are scrambled. I PROMISE he will talk and when he speaks your heart will fill with warmth and your eyes will fill with tears. Only then will it all make scence, and the wait will be well worth it. As for 1month left don't count down the days, count the moments of serenity in each day. Remember when he is in a bad mood don't talk to him! The only thing you will miss out on is getting stressed out or being yelled at, & who needs those memories. I recall when my mom was pissy or angry I would bring her food, meds, say I love you and walk the hell out. The emotion of why she was mad wouldn't last as long when I didn't try to fix her problems. I hope I helped and this will be the hardest thing I hope you ever have to face. You are your families hero! Even thou I don't know you, I feel obligated to say THANK YOU for what you are doing, The greatest honor anyone can achieve in life is helping someone else accept their own death. Your courge is an example of the hearts ability to love what the brain cannot comprehend. Ask or vent ANYTHING, ANYTIME ......

    It is okay. I know you mean well. It is not the issue of it being his journey, I respect that. It is the matter of what to do. My son and I feel at a loss on his being withdrawn from us. I think it hurts so much because my son is hurting. When your child says " I do not want my father to leave me this way" really hurts.
    We are not allowed to show sadness or pain around him. Even though I want to hug him and tell him how much he means to us and we love him. He will actually tell you to "get your sad **** out of here." Of course I would like to speak with him, I love him, I am going to miss him. I think it most difficult not being able to be close to him. I think being close to him makes him so sad that he will be leaving us and it causes him pain so he keeps us away.
    It really is not about me, it is about how to help him be at peace. I do not want him to leave this way. Does that make sense?
  • ShariVan
    ShariVan Member Posts: 5
    #19
    unknown said:

    This comment has been removed by the Moderator

    Thank you so much for the kind words and support.
    My husband was diagnosed last August stage IV. He has gone through just about every chemo I can think of. He has had no radiation as it will not benefit him. Nothing has worked and he has it all over now. He does have a stent that was out in 2 weeks ago to help him eat as he will not have a feeding tube. He is 6'1 and weighs 145 lbs now. He was a beautiful man and the love of my life. This is just so damn hard to watch someone you love just wither away.
    My husband is aware of his time here on Earth and has declined any more treatment which I agree with. It is about the quality of time he has left. We have tried everything and he accepts that it is time to stop trying. My husband is a spiritual man but not religious and does not talk about God, my son has fears because he does not know where is father stands on God and if he will see him in Heaven one day. That just kills me.
    I live in Sacramento CA, I have had Hospice over here and he declined them. He is a stubborn man. He feels he does not need them, I do but it is not my choice. I took care of his father till the end and only had Hospice 1 week before his death. This time is so much harder for me.
    I have no family here and my husband has a sister whom he does not speak with, I understand him not wanting to see her. That is a long story but there are very evil people in this world and she belongs to the club. My close friends live far away so I am alone dealing with this. I think that is the hardest part for me.

    My life has always been filled with music, my husband is an amazing musician, he plays the piano, guitar and so on and I have enjoyed watching him perform. My son never played anything but woke up one day just being able to play the piano (weird). My son is just incredible and my husband is so proud of him and of course there is a bond there that runs so deep. It was like God new what was going to happen and passed on my husbands skills to our son so he would live on. I am very blessed that I wake up to beautiful music being played on the piano to when I go to bed. Not many people get to have that joy. My husband can't play anymore but the music lives on.

    Anyway, that is all I can type right now. Hard to type and cry.
    Shari
  • jojoshort
    jojoshort Member Posts: 230 Member
    #20
    Hi ShariVan
    I, too, am caregiver for a stage 4 hubby. I am searching best ways to help him, and I see lots of good info in the replies here.
    Like you, we are young and married 32 years, with 22 and 21 yr old young adult children.
    I have been going to see a counselor to help me be my best for my family. May I suggest you, too, seek a counselor who can help mentor you through this very tough journey.
    Some thoughts I have had to sustain me and maybe you can find some use for them:
    There is beauty in each and every day, and when you find a bit of beauty, dwell on it and make it yours.
    There are some very strong women who have also lost their husbands. We will learn from them and try to do our best, while realizing that we are only human.
    Your husband has turned inward, going over his life and mulling his accomplishments and his disappointments. He is concerned with how his life matters to the world. That is a very human thing to do. I'm sorry he is not ready to open up to you yet. I hope he will.
    Please feel free to contact me, as I think we have a lot to offer each other.
    This is a scary journey. We don't have to do it alone.
  • oriontj
    oriontj Member Posts: 375
    #21
    I know what you're feeling
    My husband was diagnosed in July 09 and has yet to talk about it to any of us. He keeps it all inside and will not let anyone in. It's hurtful to those around him. But that is him....

    I will pray for you that it will change, but as William said, it may not. The disease is bad enough without the added burden of a husband who won't talk about it.

    jan

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