Am I right, am I wrong?

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david54
david54 Member Posts: 164 Member
edited March 2014 in Caregivers #1
My wife had her second paracentesis in two weeks for almost 8 liters of fluid. Bear in mind she is only about 5ft 2 inches and now with the fluid loss she weighs about 70 pounds. She has been miserable. She was up all night because her distended abdomen was causing her so much discomfort, hard to walk, no caloric intake. I got a standing order for paracentesis so all we have to do is schedule it at the hospital without going thru the doctor’s nurse which takes time.

I talked with her oncologist today and he wants to come to our house tomorrow and talk with her. He wants to stop the chemo and thinks she may be near the end stages of her disease – last weeks CT scan will help clarify that. I am not sure how she feels about this. She sleeps all day, its hard to engage much with her. She mentioned to me that she still wants to go to the infusion center tomorrow to get her lab work drawn, no way can I get her into our car, have her writhe in pain, while she practically sticks her feet into my face while I am trying to get her to a clinic for lab work. I just can’t or won’t subject her and myself to this anymore.

Part of me feels that I am going behind her back, that I am being duplicitous. Am I rushing things here? To be honest, part of me wants this over. I have suffered as well as she has, differently of course, the past 3 years. Yet part of me wants to have my wife back and when we do talk, I want to do all I can.

Thanks for letting me share my thoughts at this particular moment.

David

Comments

  • zinniemay
    zinniemay Member Posts: 522
    #2
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    Sorry
    David,
    I am so sorry , I just don't know what to say I have not reached that point with my husband, nor do I want to. I wish there was something I could say that would help you and your wife. If she is still wanting to go then she must still have some hope? Is this something that if you decide not to do anymore that you can live with ? I just wish to the high heaven that there was a easy answer.
    I wish you peace in your heart.
  • hope0310
    hope0310 Member Posts: 320
    #3
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    zinniemay said:

    Sorry
    David,
    I am so sorry , I just don't know what to say I have not reached that point with my husband, nor do I want to. I wish there was something I could say that would help you and your wife. If she is still wanting to go then she must still have some hope? Is this something that if you decide not to do anymore that you can live with ? I just wish to the high heaven that there was a easy answer.
    I wish you peace in your heart.

    We cannot deny our feelings....
    I am so sorry things have gotten to this point.

    I have read many of your posts, and you have been a loving caregiver for your wife.
    I would not press your wife to stop treatments, that should be her decision, or at least the recommendation of her doc.

    Sometimes, stopping treatment and adapting to pallative care is the thing to do. Live your lives, laugh, love and make memories....

    We all have our inner voices and thoughts, thank you for sharing yours, as some are not brave enough to bare their souls....

    My best to you and your wife.
  • Unknown
    Unknown
    #4
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    This comment has been removed by the Moderator
  • Barbara53
    Barbara53 Member Posts: 652
    #5
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    stand back
    Hi David,
    Early on in my mother's illness, my veterinarian brother advised to "let the doctors handle the difficult moments." After all, he pointed out, they are the ones who wake up in the morning wondering what to do about this patient or that one. It's their job, and most of them are very good at it. I've also been amazed at the wonderful phrases oncologists keep in their black bags for these difficult moments. They really do know what to do, and in this case, how to tell a patient that it's time to get ready to go. That's probably why the oncologist wants to come to your house. Tell your wife he/she is coming, not your decision, the doctor's. Buy some nice cookies, and stand back.

    When we caregivers act on our patient's behalf to limit suffering because rational decision-making is beyond their abilities, we are doing the right thing. Good luck with this day.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #6
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    Hi, David
    I have read many of your posts and know that you have done your best in a very difficult time. My husband reached the point you are at now a month before he passed away. Our oncologist tried everything. I finally asked the hard questions. The final one was, " is it time to call hospice?" the doctor actually seemed to be relieved that I asked. His answer was yes and he made the referral. I did have to push the issue though. I told the doctor to be brutally honest with us. It is hard. You feel like you are giving up, but you really aren't. Hospice made my husband more comfortable than he had been in months. They were available for my questions 24/7. Yes, we have to let the patient make the final decisions if they can, but we need to be certain that they understand and have all the information. When the doctor said yes, I turned to my husband and asked if that was what he wanted. When the facts were there in stark words, he knew that it was time to stop the fight he had been in for six years. He hadn't lost that fight. He had just accepted that God had other plans for him. That was not easy for him. Yet, we filled that last month with love, friends, and memories. We laughed, and at times, we cried. His end was peaceful. He said goodbye to friends and family and knew his time had come. Now I am left with this deep feeling of loss and grief and continue to struggle with it 10 months later. Yes, the stress is less. I wouldn't have wanted him to suffer any more, but I do miss him. I also prayed for a quick, peaceful end. Wanting your loved one to be free of pain and suffering is a very human emotion that shows your deep love for your wife. Take care, Fay
  • augigi
    augigi Member Posts: 89
    #7
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    grandmafay said:

    Hi, David
    I have read many of your posts and know that you have done your best in a very difficult time. My husband reached the point you are at now a month before he passed away. Our oncologist tried everything. I finally asked the hard questions. The final one was, " is it time to call hospice?" the doctor actually seemed to be relieved that I asked. His answer was yes and he made the referral. I did have to push the issue though. I told the doctor to be brutally honest with us. It is hard. You feel like you are giving up, but you really aren't. Hospice made my husband more comfortable than he had been in months. They were available for my questions 24/7. Yes, we have to let the patient make the final decisions if they can, but we need to be certain that they understand and have all the information. When the doctor said yes, I turned to my husband and asked if that was what he wanted. When the facts were there in stark words, he knew that it was time to stop the fight he had been in for six years. He hadn't lost that fight. He had just accepted that God had other plans for him. That was not easy for him. Yet, we filled that last month with love, friends, and memories. We laughed, and at times, we cried. His end was peaceful. He said goodbye to friends and family and knew his time had come. Now I am left with this deep feeling of loss and grief and continue to struggle with it 10 months later. Yes, the stress is less. I wouldn't have wanted him to suffer any more, but I do miss him. I also prayed for a quick, peaceful end. Wanting your loved one to be free of pain and suffering is a very human emotion that shows your deep love for your wife. Take care, Fay

    David, I know my mum relied
    David, I know my mum relied so much on me as her caregiver to make the tough decisions or at least to give her my opinion. It is hard to be so torn - you want their suffering over and your life back, but you aren't ready to lose them. It's just gut wrenching.

    I totally second the thought of hospice/palliative care. They were just incredible. I'm a nurse, but I couldn't do what they do, and they made things easier for both me (and the family) and mum.

    If your wife is bed bound or sleeping most of the day, she needs to think about quality v quantity of life. Although do check they don't need to alter meds - mum had to get pain meds changed around and dexamethasone started and she was 100% brighter and more awake in 2 days.

    As long as you keep both your wife's and you best interests at heart, I am sure you'll make the right decisions.
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #8
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    augigi said:

    David, I know my mum relied
    David, I know my mum relied so much on me as her caregiver to make the tough decisions or at least to give her my opinion. It is hard to be so torn - you want their suffering over and your life back, but you aren't ready to lose them. It's just gut wrenching.

    I totally second the thought of hospice/palliative care. They were just incredible. I'm a nurse, but I couldn't do what they do, and they made things easier for both me (and the family) and mum.

    If your wife is bed bound or sleeping most of the day, she needs to think about quality v quantity of life. Although do check they don't need to alter meds - mum had to get pain meds changed around and dexamethasone started and she was 100% brighter and more awake in 2 days.

    As long as you keep both your wife's and you best interests at heart, I am sure you'll make the right decisions.

    David
    Right or wrong I don't know. Just wanted to say. I'm so sorry you and your wife are going thru this. I know your heart is ripping apart. Whatever decision you make I wish you peace.
    Jennifer
  • david54
    david54 Member Posts: 164 Member
    #9
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    Hospice came this morning.
    Hospice came this morning. They told me its just a matter of "Weeks." They affirmed my decision and were very supportive.

    Thank You all for your amazing support. Its time for me to try and sleep.

    David
  • BWK
    BWK Member Posts: 23
    #10
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    Right or Wrong About Feelings
    David,

    I felt like this when my mother was in the last stages of cancer - she was so so miserable and it was obvious she was very actively dying. I think "nature" has built in this phenomenon of us wanting the person to go so that we can let go. I don't think that you should feel bad at all about it. There is a point where it's very clear that there's no saving the person - that they can never recover. Let yourself feel these feelings because I think they're natural and necessary. It helps us let go.
  • bingles
    bingles Member Posts: 120 Member
    #11
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    BWK said:

    Right or Wrong About Feelings
    David,

    I felt like this when my mother was in the last stages of cancer - she was so so miserable and it was obvious she was very actively dying. I think "nature" has built in this phenomenon of us wanting the person to go so that we can let go. I don't think that you should feel bad at all about it. There is a point where it's very clear that there's no saving the person - that they can never recover. Let yourself feel these feelings because I think they're natural and necessary. It helps us let go.

    Hi David...
    I have followed your postings and have been in awe of the love and compassion that you showed to your dear wife during this horrific period...as I read your posts I often shook my head and wondered how people do it....these endless periods of pain and suffering that they go though with their loved ones...I was incredibly lucky..in that I didn't have to go though such emotional torment..because my husband when given the diagnosis of end stage metastatic lung cancer..was only given the option of pallitive therapy...choose to decline that and go home to live out the rest of his life...however long that was to be....it was only 6 wks...and its because of hospice that those 6 wks were at least tolerable..they managed the pain..and he passed in total comfort.
    You have been a loving and supportive spouse..you clearly would have gone to the ends of the earth for her....and it seems that now your strenght will be tested even deeper as you prepare to let her go.
    Don't ever doubt yourself or your choices...our hearts always show us the right path..
    Your in my prayers...
    Pat
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #12
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    david54 said:

    Hospice came this morning.
    Hospice came this morning. They told me its just a matter of "Weeks." They affirmed my decision and were very supportive.

    Thank You all for your amazing support. Its time for me to try and sleep.

    David

    We Are Here For You
    Hello David
    So sorry to hear that you and your wife's journey with cancer has come to this point. You have been an extremley wonderful husband and caregiver. There does come a time when this journey must come to an end. I am so happy to hear that hospice has come. They will be so very helpful to both of you. They will teach you how to accept this, how to deal with it. Keep in touch when you can. You are not doing the wrong thing at all. Peace be with all of you at this difficult time.
    Tina

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