Not sure how to care for my husband

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crose
crose Member Posts: 9
edited March 2014 in Caregivers #1
I posted this under Esophageal Cancer a few days ago, but hope that I get more ideas from the other caregivers out there...
My husband has had a long battle with EC...was diagnosed at stage IVa; the original chemo-
radiation knocked it back, but it came back with a vengeance and spread to his liver and then brain. We had hopes of enrolling in a clinical trial, but this was before there was brain involvement, and that disqualified him. He has had no treatment since the brain tumor was removed, but somehow amazingly remains "optimistic" that he is going to beat this thing.
I am at a loss as to how to help him. I see him getting weaker every day. He is not keeping food down, even after having a stent placed in his esophagus.

When do you decide that hospice is appropriate?
How do I help him?

This is breaking my heart.

Comments

  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #2
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    Decisions
    This is a very difficult time for you both, but only you have the answers. There is no right way to care for your husband. There is no right time to call in hospice. We each find our own ways and time. Personally, I felt that the decision to bring in hospice was my husband's. He is the one who fought to buy six years of time after his original surgery and stage 4 diagnosis. It was his life and his death. I felt that he had the right to choose the time for hospice. I did ask the dr. if he thought the time had come. When he said yes, I left it up to my husband to make the final decision. It is good to get hospice as soon as your husband is ready. They can help with so many things including pain control. Looking back, I can see where we could have used their services earlier, but Doug just wasn't ready.

    It's very hard for us to watch our loved ones' bodies deteriorate. We feel so helpless. I don't have any words that can help you, but I am here. I have been where you are. Just hold on and say I love you often. Take care, Fay
  • Barbara53
    Barbara53 Member Posts: 652
    #3
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    help for both of you
    I feel your grief, and am at a loss for words. I do think you should call a hospice agency and start getting help for both of you. You do not have to bear this alone, and having skilled caregivers to help you will make your husband feel better, too. He probably knows more than he is able to verbalize. Don't you think it will ease his mind to see you talking and smiling with a parade of visitors who help you take care of him? The coming months or weeks or whatever should be a special time for you and your family, not a nightmare.

    It should only take a phone call, and then an intake nurse will visit you and your husband. The agency will then contact your husband's doctors for needed paperwork, so there are next to no hassles.

    The best of luck with this day. Everything comes and goes one day at a time.
  • abfaul6
    abfaul6 Member Posts: 9
    #4
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    Hospice when?
    My husband is 4th stage lung cancer, diagnosed July 2008. He has been through 2 series of chemo and during the 3rd was hospitalized with double pneumonia. We had talked to the doctor about hospice during his chemo treatments, the doctor said "I will tell you when it is time". After the pneumonia he told us "now is the time". We had the hospice people come to the room before we went home we were given an outline of their services, and questions were answered. My husband was prepared and agreed. This was Dec. 2009. They will take you on when you have 6 months or less of time. I am so glad we did not wait. Many people think of them as only for the 'last of your days' time. That is not true, they are such a help in many ways. I am relieved to have a nurse at the end of the phone 24/7. The nurse also comes 1 time a week. She is so very caring and helpful. An aide comes to help with his shower 3 x week. The chaplain comes and so does a social worker. All assist in different areas. My husband has been very fearful of "drug addiction" because they use morphine for pain. The nurse has been able to help him deal with his fears, he has found that the morphine they have prescribed works well, and that they really do know how to make you comfortable and pain free.

    I hope you can follow some of the suggestions from different ones. Yes - it is time for both of you.

    Ann
  • SamsWife
    SamsWife Member Posts: 50
    #5
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    Hi Crose,
    I am so sorry for
    Hi Crose,

    I am so sorry for what you and your husband are going through right now - I hope I don't scare you but I just wanted to offer some of my husband's and my experiences with hospice. It was wonderful - I can't say enough good things about them - they are kind and wonderful and like someone else said . . . a nurse on the other end of the line 24/7 for whatever your concerns are. They will come whenever you need them. My husband was diagnosed with late stage colon cancer in July of 2007 - he just passed away on March 1. His onc. suggested we call hospice early this past December. We did and they started giving us services right away. When it was time for a hospital bed in our home, they brought it the very day I called. I was sleeping downstairs on the couch and he was upstairs in the bed right above me - this was the arrangement because he was often awake at night with the lights on using the computer and such because he sometimes had a hard time sleeping at night. It got to the point where it was dangerous for him to get out of bed without help and he had become very confused and was hallucinating quite a bit - he would get up out of bed thinking that he was doing something that wasn't really happening -he often tried to go to his computer to "work". The last night before the bed, I heard him up upstairs and it scared me to death - I thought he was going to try to go down the stairs by himself and before I could get upstairs, I heard a loud crash - I almost had a heart attack. He didn't fall - it was the cat knocking something off the dresser. Then and there I decided we needed a bed downstairs so he didn't have to go up and down the stairs any longer and I could be next to him and hear when he was trying to get up - such a comfort! My thoughts are that if you, even for a moment, think that help from hospice would be nice - definitely give them a call. Maybe you already have. If so, I hope you are finding some peace having their help. I ended up sending my husband to the in house hospice facility the last week of his life. At first, I felt really guilty about it because he had made it clear that he wanted to die at home. However, after he was there and the rest of the family saw what a wonderful place it was, we were all at peace with him being there - they were so wonderful and took such good care of him - that left us free to just be with him and share some close time with him.

    Again, I'm so so sorry for what you're going through - what a cruel disease - I hate cancer.

    Good luck and god bless! We had some times of real peace with my husband before he passed and I will forever be grateful for that.

    Tina
  • bingles
    bingles Member Posts: 120 Member
    #6
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    SamsWife said:

    Hi Crose,
    I am so sorry for
    Hi Crose,

    I am so sorry for what you and your husband are going through right now - I hope I don't scare you but I just wanted to offer some of my husband's and my experiences with hospice. It was wonderful - I can't say enough good things about them - they are kind and wonderful and like someone else said . . . a nurse on the other end of the line 24/7 for whatever your concerns are. They will come whenever you need them. My husband was diagnosed with late stage colon cancer in July of 2007 - he just passed away on March 1. His onc. suggested we call hospice early this past December. We did and they started giving us services right away. When it was time for a hospital bed in our home, they brought it the very day I called. I was sleeping downstairs on the couch and he was upstairs in the bed right above me - this was the arrangement because he was often awake at night with the lights on using the computer and such because he sometimes had a hard time sleeping at night. It got to the point where it was dangerous for him to get out of bed without help and he had become very confused and was hallucinating quite a bit - he would get up out of bed thinking that he was doing something that wasn't really happening -he often tried to go to his computer to "work". The last night before the bed, I heard him up upstairs and it scared me to death - I thought he was going to try to go down the stairs by himself and before I could get upstairs, I heard a loud crash - I almost had a heart attack. He didn't fall - it was the cat knocking something off the dresser. Then and there I decided we needed a bed downstairs so he didn't have to go up and down the stairs any longer and I could be next to him and hear when he was trying to get up - such a comfort! My thoughts are that if you, even for a moment, think that help from hospice would be nice - definitely give them a call. Maybe you already have. If so, I hope you are finding some peace having their help. I ended up sending my husband to the in house hospice facility the last week of his life. At first, I felt really guilty about it because he had made it clear that he wanted to die at home. However, after he was there and the rest of the family saw what a wonderful place it was, we were all at peace with him being there - they were so wonderful and took such good care of him - that left us free to just be with him and share some close time with him.

    Again, I'm so so sorry for what you're going through - what a cruel disease - I hate cancer.

    Good luck and god bless! We had some times of real peace with my husband before he passed and I will forever be grateful for that.

    Tina

    Hi Crose...
    First my prayers
    Hi Crose...
    First my prayers are with you....don't wait to get on Hospice....my DH was just DX about 3wks ago with lung CA with Bone Mets....the outlook is grim....oncology still had some plans to do some pallitive treatments radiation/chemo....my husband was frigtened out of his mind with the thoughts of those treatments knowing that they were not going to truly help in the long run and only debilitate him further and faster.
    He had not been eating for three days due to anxiety/nausea....and was fading fast.
    Made the jump yesterday...got hospice on board...they are fabulous people....long story short...all factors are now in place...and a sense of comfort has settled over our home....he showered today and acutally ate without vomiting....right now he is sleeping soundly and comfortable...with the O2 on...hospice provides it all with no out of pocket costs depending on your insurance.
    I wanted whatever time we have left to be filled with good thoughts and memories...and now its possible.
    Your in my thoughts.
    Pat

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