Feeling alone and scared

RAE RAE
RAE RAE Member Posts: 11
edited March 2014 in Caregivers #1
My husband of 37 yrs was diagnoised with a recurrance of metatasic liver cancer on Aug. 31st 2010 my birthday. He had colon cancer in 2003/2004 and thought he had a full recovery. As of today he is so weak and barely eating or drinking. He is barely able to be mobile and hasn't showered in a week. He can no longer help himself off the toilet and I can hardly do it for him. A week ago we had a pallitiave nurse out and she will be back once a week. We had a hospital bed delivered for the downstairs and I sleep on a chaise next to him at night. Our 2 children help as much as they can but they both work fulltime. I am so scared and alone at night and during the day after everyone leaves and I am alone. I cry all the time and my kids told me yesterday they are so worried about me. There is nothing I can do as I have to focus on him right now. He pretty much only sleeps all day and night. His stomach is so swollen and hard as a rock. He is under the impression that if he can get stronger he will be able to start chemo again. To make matters worse we own our own business and have few employees. There is no will or trust and right now my son is trying to handle keeping it going for us. I really don't know for sure what stage he is in. Sometimes he seems able to talk if we have company, but mostly he just sleeps. I am petrified and don't know what to do. Please if anyone has any advise let me know. He elected to not do hospice at this time and I have to honor that.

Comments

  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #2
    Prayers
    My prayers are with you, Rae Rae. Your situation sounds ghastly. My husband has primary liver cancer and has been steadily getting sicker, but still is somewhat mobile. Once a week pallitive care seems pretty sparse, especially if you're having to help him with bathing and toileting. Can't your local hospice send some one to your house more often? At the very least, check in here often and vent, let us know how you're doing. I hope you can find a way or an agency that will enable you to get more help.
    God Bless,
    Penny
  • Barbara53
    Barbara53 Member Posts: 652
    #3
    the honest truth
    I'm so sorry to hear you are in this sad and scary situation. You and your husband have suffered so much, but how much is one person to bear? I understand honoring your husband's wishes on hospice, but have you shared with him how scared an overwhelmed you feel? After 37 years together, you probably know how to approach these delicate truths. The truth is that you need professional help keeping him comfortable, and your husband deserves the best help he can get. Now that he's nearing the end of his fight, it's time to get ready for something better. Please reconsider getting hospice help today. They work weekends.
  • Luv2lunch
    Luv2lunch Member Posts: 270
    #4
    Rae Rae,
    I'm so sorry for
    Rae Rae,
    I'm so sorry for what you are going through. I wish I had a magic wand and could make all of this stupid cancer go away.
    Have you tried calling his doctors to find out what they advise? I would maybe start there. Make them aware of the situation and ask what you should do.
    You also need to try and take care of yourself. You won't do your hubby any good getting sick. I know it is easier said than done.
    Mom and I will have both of you in our prayers. Please call someone though.
    Linda
  • RAE RAE
    RAE RAE Member Posts: 11
    #5
    Many Thank's
    Thank's to all of you for your kind words and advise. We managed to make it through another long night. He is still sleeping and I try to find help on this website on how to cope. I do believe my son is going to call regarding Hospice today. I simply can't do this alone anymore. My heart is breaking as my husband is only 58 and we have a grandson due in Feb. The first thing he said when he found out his cancer returned was how he wanted to grow old with me and that he had the perfect life. Such a giving person who would do anything to help other's and I can't do anything to help him. We have tried to get him to open up with us but he just won't. I guess at this point I have decidede to let him deal with thing's however he is able to. Please know I have you all im my prayer's as well and am so grateful I found all of you, I am sure it was not by accident.

    Robin
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #6
    RAE RAE said:

    Many Thank's
    Thank's to all of you for your kind words and advise. We managed to make it through another long night. He is still sleeping and I try to find help on this website on how to cope. I do believe my son is going to call regarding Hospice today. I simply can't do this alone anymore. My heart is breaking as my husband is only 58 and we have a grandson due in Feb. The first thing he said when he found out his cancer returned was how he wanted to grow old with me and that he had the perfect life. Such a giving person who would do anything to help other's and I can't do anything to help him. We have tried to get him to open up with us but he just won't. I guess at this point I have decidede to let him deal with thing's however he is able to. Please know I have you all im my prayer's as well and am so grateful I found all of you, I am sure it was not by accident.

    Robin

    hospice
    Robin,

    I'm sorry you are where you are in this fight.

    Please call the doctor and ask that hospice be provided. Hospice is not just for short term care: you need support and this is a good place to get it.

    Please let hospice help you get things under control and let you focus on your husband.

    Hugs.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #7
    RAE RAE said:

    Many Thank's
    Thank's to all of you for your kind words and advise. We managed to make it through another long night. He is still sleeping and I try to find help on this website on how to cope. I do believe my son is going to call regarding Hospice today. I simply can't do this alone anymore. My heart is breaking as my husband is only 58 and we have a grandson due in Feb. The first thing he said when he found out his cancer returned was how he wanted to grow old with me and that he had the perfect life. Such a giving person who would do anything to help other's and I can't do anything to help him. We have tried to get him to open up with us but he just won't. I guess at this point I have decidede to let him deal with thing's however he is able to. Please know I have you all im my prayer's as well and am so grateful I found all of you, I am sure it was not by accident.

    Robin

    Sorry
    I am sorry that you and your family are going through this. I lost my husband of 42 years in October of last year. I understand that you are scared. I was, too. My greatest fear was losing him. Yes, we were supposed to grow old together. That didn't happen. Now I am living my greatest fear. Doug fought his cancer for six years. The last few months were the hardest. He, too, wanted to put off hospice, and we only had them for a month. I'm sorry we didn't call them sooner. Just the 24/7 phone number was a great comfort. If I had questions, I could talk to the on call nurse at any time. You might also want to check on home health nurses. Some are not connected to hospice but can give you help and relief. It sounds like your children are there for you. Let them help. Maybe one of them could stay the night so you can get a good night's sleep. Prod your doctor for information. Is chemo a possibility in the future? If not, ask the doctor to give your husband an honest prognosis. If nothing more can be done, he needs to know that. Then hospice will make more sense to him. The number one rule of caregiving is to take care of yourself. I know that it is the hardest thing to do, but you really do need to do it. See your dr. to get meds to help you through this if you need them. If you get sick, you aren't going to be any good at caregiving. My thoughts and prayers are with you. I can tell you that we do survive losing the other half of us. It isn't easy, and even after a year, I miss Doug every day. I cherish the time we had, and I appreciate my family more because they have been there for me. This isn't fair, and it is ok to be scared and angry. My guess is that your husband is experiencing some of the same feelings. Hold each other tightly and say i love you often. Take care, Fay
  • RAE RAE
    RAE RAE Member Posts: 11
    #8
    grandmafay said:

    Sorry
    I am sorry that you and your family are going through this. I lost my husband of 42 years in October of last year. I understand that you are scared. I was, too. My greatest fear was losing him. Yes, we were supposed to grow old together. That didn't happen. Now I am living my greatest fear. Doug fought his cancer for six years. The last few months were the hardest. He, too, wanted to put off hospice, and we only had them for a month. I'm sorry we didn't call them sooner. Just the 24/7 phone number was a great comfort. If I had questions, I could talk to the on call nurse at any time. You might also want to check on home health nurses. Some are not connected to hospice but can give you help and relief. It sounds like your children are there for you. Let them help. Maybe one of them could stay the night so you can get a good night's sleep. Prod your doctor for information. Is chemo a possibility in the future? If not, ask the doctor to give your husband an honest prognosis. If nothing more can be done, he needs to know that. Then hospice will make more sense to him. The number one rule of caregiving is to take care of yourself. I know that it is the hardest thing to do, but you really do need to do it. See your dr. to get meds to help you through this if you need them. If you get sick, you aren't going to be any good at caregiving. My thoughts and prayers are with you. I can tell you that we do survive losing the other half of us. It isn't easy, and even after a year, I miss Doug every day. I cherish the time we had, and I appreciate my family more because they have been there for me. This isn't fair, and it is ok to be scared and angry. My guess is that your husband is experiencing some of the same feelings. Hold each other tightly and say i love you often. Take care, Fay

    Thank-you for your kind
    Thank-you for your kind words. We are scheduled to have Hospice out on Thurs. They can't be here before that. After talking to them today they feel he has days or maybe a week. His doctor has no options left for him treatment wise. I do not have a doctor as we are new to the area. I am hopeful to have someone stay with me at night but don't know yet. My son's wife is pregnant and needs him at home. I have family a few hrs. away that may come up later in the week. It is hard to know what to do. I haven't any plans for his death or how to handle it. I tell him I love him but can't really hold him anymore. I know how tired he is and just wish he could open up to us. My worst fear is that he is scared and perhaps we could make him more at peace with things. I don't know if he is in denial or he is just trying to spare us any more pain. It makes its hard to comfort him. I have no idea how I will survive this as I also have to try and keep our business in tact which is 2-1/2 hrs away. There is no will or power of attorney or living trust, so don't know how everything will transistion legally. I live in constant fear for me and my family, and worry constantly that I will be next. I am afraid to go to the doctor for fear of the same thing happening to me. This is such a dark lonely time and I don't know how to make it better.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #9
    RAE RAE said:

    Thank-you for your kind
    Thank-you for your kind words. We are scheduled to have Hospice out on Thurs. They can't be here before that. After talking to them today they feel he has days or maybe a week. His doctor has no options left for him treatment wise. I do not have a doctor as we are new to the area. I am hopeful to have someone stay with me at night but don't know yet. My son's wife is pregnant and needs him at home. I have family a few hrs. away that may come up later in the week. It is hard to know what to do. I haven't any plans for his death or how to handle it. I tell him I love him but can't really hold him anymore. I know how tired he is and just wish he could open up to us. My worst fear is that he is scared and perhaps we could make him more at peace with things. I don't know if he is in denial or he is just trying to spare us any more pain. It makes its hard to comfort him. I have no idea how I will survive this as I also have to try and keep our business in tact which is 2-1/2 hrs away. There is no will or power of attorney or living trust, so don't know how everything will transistion legally. I live in constant fear for me and my family, and worry constantly that I will be next. I am afraid to go to the doctor for fear of the same thing happening to me. This is such a dark lonely time and I don't know how to make it better.

    you need to make some calls
    Robin, wherever you live if there is a hospice they can put you in touch with a church that will be there for you. If nothing else, a minister can help you make the final plans for your husband and it may be that your husband would appreciate having the opportunity to talk with a minister, even if he has never been a religious person. People need comfort and need to know what they may look forward to. Find a number and call a local church.

    If you have neighbors you can trust, let them know what is going on. Please do not try to go through this with just your family. It can be done, but it is unnecessarily difficult.

    Please try to remember that in the midst of all this darkness your husband is making a transition to a much sweeter place. Try to hold onto this. You have always wanted good things for him and you are making this transition as easy as possible.

    You are never alone, either one of you. You are both in God's hands and He wants only good things for you, even if we can't always believe that.

    You have everyone here, also, Robin.

    Hugs.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #10
    RAE RAE said:

    Thank-you for your kind
    Thank-you for your kind words. We are scheduled to have Hospice out on Thurs. They can't be here before that. After talking to them today they feel he has days or maybe a week. His doctor has no options left for him treatment wise. I do not have a doctor as we are new to the area. I am hopeful to have someone stay with me at night but don't know yet. My son's wife is pregnant and needs him at home. I have family a few hrs. away that may come up later in the week. It is hard to know what to do. I haven't any plans for his death or how to handle it. I tell him I love him but can't really hold him anymore. I know how tired he is and just wish he could open up to us. My worst fear is that he is scared and perhaps we could make him more at peace with things. I don't know if he is in denial or he is just trying to spare us any more pain. It makes its hard to comfort him. I have no idea how I will survive this as I also have to try and keep our business in tact which is 2-1/2 hrs away. There is no will or power of attorney or living trust, so don't know how everything will transistion legally. I live in constant fear for me and my family, and worry constantly that I will be next. I am afraid to go to the doctor for fear of the same thing happening to me. This is such a dark lonely time and I don't know how to make it better.

    Hard Time
    This is a very hard time. Our sons, family, and pastor really helped me through it. We watch them slide away a little at a time and we can't do anything but pray. I was fortunate that Doug had a very strong faith. His greatest concern was me. Do reach out to friends, family, and neighbors. Hospice can help you with some of the things you are worried about. They made the calls to the doctor and coroner when Doug passed. Doug had already told the pastor what kind of a service he wanted and we did have time to be sure that all of our affairs were in order with wills, trusts, etc. You might want to consider having an attorney come to the house to do a simple will. Then you would have one less thing to worry about. I can only imagine all of the things and worries that are going through your mind right now. Try to take some comfort in remembering that we are never really prepared. We may think we are, but we are not. Just don't be afraid to ask for help. Most people are willing to help out. I have two sons both of whom live about an hour and a half away. They worked out a schedule with their employers so that one would be with me all the time. Toward the end they both stayed close by. Tell your family or friends that you need their support. I'm sure some will answer the call. This is hard and there is really no way to make it any easier. I guess we just have to endure some things. Prayer helped me. That and those who truly cared for both Doug and I. You have already started the grieving process. This is not what you planned or wanted. Sadly, you are not alone with your grief. Many here are feeling it along with you. Fay

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