Hi there, fellow caregivers, new here

bluetopaz
bluetopaz Member Posts: 10
edited March 2014 in Caregivers #1
Hi there. I have been riding this cancer caregiver roller coaster since 9-09 when my then 48 year old hubby was dx'd with Hodgkins stage IVB. To make a long story short, he underwent a rescue stem cell transplant with a ten-fifteen percent survival rate last Sept. Before that his disease became refractory for the second time and I had to be told alone by his doc that he had 2 choices: go home on hospice or attempt the rescue transplant. That obviously was the worst day of my life. Then I had the fun task of going with the nurse while she told him.
Since transplant he has been sick, sick, sick. He was hospitalized about half of December for various complications, mostly gastrointestinal bleeding which I attribute to the conditioning chemo pre-transplant. We have 3 daughters and no other local family or support. I will not leave him alone with one of the girls (they are all teenagers...yeah fun huh???) because he has been so unstable that I fear something will happen and the one caring for him would feel guilty forever. I am trapped at home now but I try to make the best of it. I am a nurse by trade which is a mixed blessing...I am glad I have a medical background but I also KNOW what is going on and it scares me more. His post transplant PET scan was cancer free but we are still so afraid from everything that happened that we are afraid to celebrate, then I feel guilty for not being thankful. I don't think God would bring him through all of that and then take him but he just won't recover. Maybe it was all too much.
Thanks in advance and nice to meet you. God bless all of you caregivers as I know how difficult it is.

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    if only God made deals
    Hello and welcome. Man, have you been through it, as have so many here. I wish God made deals about suffering, but it doesn't seem to work that way. This is heretical talk, but now that I've seen tooo much, I think maybe God's early invitations are the best ones.

    Your story made me think of how we caregivers bear the burden of reality for everyone. Don't be too afraid of what comes next, because participating in the dying process feels much less crazy than helping your loved one through 2nd and 3rd line treatments that have little chance of success. At the same time, you and your kids will always know that your husband fought hard and did everything he could.

    Your kids will be stronger for this. Several months back there was a thread here on how great teen chilluns were doin keeping the torches burning. Don't sell them short! This shouldn't happen to good people but it does. Good luck!
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    hospice still
    You'll read on other posts here how families/wives have called hospice and gotten the much needed relief and support they need. Hospice is not just for end of life care.

    Please talk with your doctor's office to get a recommendation on hospice care. I think it could make a big difference in your situation.

    As for leaving the girls with him: if you must leave and you are uncomfortable leaving just one (I can understand your reasoning), leave two of the girls with him. This is a life experience and while I don't say that everyone can handle it, everyone deserves the chance. Make it initially for brief periods of time (walk around the block or yard). My children are older than yours but even as teenagers in our large extended family they have taken their turns at hospital bedsides and are stronger for it.

    Hugs to you, bluetopaz. Prayers, too.
  • bluetopaz
    bluetopaz Member Posts: 10
    #4
    Barbara53 said:

    if only God made deals
    Hello and welcome. Man, have you been through it, as have so many here. I wish God made deals about suffering, but it doesn't seem to work that way. This is heretical talk, but now that I've seen tooo much, I think maybe God's early invitations are the best ones.

    Your story made me think of how we caregivers bear the burden of reality for everyone. Don't be too afraid of what comes next, because participating in the dying process feels much less crazy than helping your loved one through 2nd and 3rd line treatments that have little chance of success. At the same time, you and your kids will always know that your husband fought hard and did everything he could.

    Your kids will be stronger for this. Several months back there was a thread here on how great teen chilluns were doin keeping the torches burning. Don't sell them short! This shouldn't happen to good people but it does. Good luck!

    Thanks, Barbara
    I know what you are talking about. If I could take his suffering I would. My hubby HATES docs (one reason for such advanced disease but who knows if it would have been dx'd anyway, lymphoma has so few symptoms) and is terrified of needles, so you can imagine how much this has devastated him. I SO often wonder if we should have just come home on hospice as his quality of life is so diminished. But I am bound and determined to fight with him if that is what he wants. I will support him either way. He is the bravest person I know...going through all of this and not giving up...he has had his moments but he always seems to get the will to live back.
    My girls thank God are good kids, and maybe I am being overprotective. I agree that they will learn from this, my sixteen year old wants to be a dietician and work in oncology.
    Thank you, thank you, thank you!
  • bluetopaz
    bluetopaz Member Posts: 10
    #5
    Noellesmom said:

    hospice still
    You'll read on other posts here how families/wives have called hospice and gotten the much needed relief and support they need. Hospice is not just for end of life care.

    Please talk with your doctor's office to get a recommendation on hospice care. I think it could make a big difference in your situation.

    As for leaving the girls with him: if you must leave and you are uncomfortable leaving just one (I can understand your reasoning), leave two of the girls with him. This is a life experience and while I don't say that everyone can handle it, everyone deserves the chance. Make it initially for brief periods of time (walk around the block or yard). My children are older than yours but even as teenagers in our large extended family they have taken their turns at hospital bedsides and are stronger for it.

    Hugs to you, bluetopaz. Prayers, too.

    Thank you, Noellesmom
    I have a dog named Noelle and so I am a "Noellesmom" also...; ) Thanks for your reply.

    I have a visiting nurse coming in who does his blood draws and assessment, vitals, etc. The agency she is with has hospice and I am aware of the services they offer, as I have worked with hospice in my job as a nurse. We also have a case manager through our insurance that is AWESOME...she even gave me her home number and I have used it once when I was desperate. She keeps telling me what our carrier will cover as the situation changes. SOOOO I am covered there, thanks.

    I forgot to include that we live in a rural area...my girls go to school nineteen miles away from home. The town we live outside of has NOTHING. I can buy a soda in town if it is a good day and the machine is actually working but that is all. I don't even know if they could get an ambulance out if needed any longer.(hubby belongs to the fire dept.) I have left them at home with him when he is stable for brief periods, but his condition can change so quickly it worries me. Believe me they have done their time at the bedside at home and in the hospital. He did 4 rounds of chemo and then the transplant at Cancer Treatment Centers of America outside of Chicago (the BEST in the WORLD) and they were there for a week. He has been hospitalized locally so many times I cannot count and they hate sitting there but volunteer to go.

    Thanks and hugs right back at ya ; )
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #6
    bluetopaz said:

    Thank you, Noellesmom
    I have a dog named Noelle and so I am a "Noellesmom" also...; ) Thanks for your reply.

    I have a visiting nurse coming in who does his blood draws and assessment, vitals, etc. The agency she is with has hospice and I am aware of the services they offer, as I have worked with hospice in my job as a nurse. We also have a case manager through our insurance that is AWESOME...she even gave me her home number and I have used it once when I was desperate. She keeps telling me what our carrier will cover as the situation changes. SOOOO I am covered there, thanks.

    I forgot to include that we live in a rural area...my girls go to school nineteen miles away from home. The town we live outside of has NOTHING. I can buy a soda in town if it is a good day and the machine is actually working but that is all. I don't even know if they could get an ambulance out if needed any longer.(hubby belongs to the fire dept.) I have left them at home with him when he is stable for brief periods, but his condition can change so quickly it worries me. Believe me they have done their time at the bedside at home and in the hospital. He did 4 rounds of chemo and then the transplant at Cancer Treatment Centers of America outside of Chicago (the BEST in the WORLD) and they were there for a week. He has been hospitalized locally so many times I cannot count and they hate sitting there but volunteer to go.

    Thanks and hugs right back at ya ; )

    Noelle
    Was my beloved fourteen year old bichon frise, whom I lost this summer. She slept in my arms every night, blue. I really miss her.

    Will keep you and your family in my prayers and thoughts.

    Hugs!
  • bluetopaz
    bluetopaz Member Posts: 10
    #7
    Noellesmom said:

    Noelle
    Was my beloved fourteen year old bichon frise, whom I lost this summer. She slept in my arms every night, blue. I really miss her.

    Will keep you and your family in my prayers and thoughts.

    Hugs!

    Noelle
    Ahhhh...I am ao sorry. My Noelle is a twelve year old Lab-Border Collie mix. She is a sweetie but doesn't sleep with me. Would love it if she would but she just isn't that type of dog. I have another lab mix that does though named Reese because she is chocolate colored and she sleeps with me and hubby. Luckily she is small enough to do it.
    Thanks for the thoughts and prayers...same to you.

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