When is enough enough

coping in CA
coping in CA Member Posts: 20
in Caregivers #1
Hello - I have been around before. My wife has lung cancer, mets to brain and cancer in csf that is not going away. She has been in a rehab facility since April and had been back to the hopital several times for infections that cause her to have confusion. She still wants to receive her chemo treatments. However, she has not had a treatment in almost 3 weeks and was just released from the hospital recovering from c. diff and a uti.

She can barely walk. She had to get medical transport to the cancer center for hydration because I was afraid I physically could not do it. Yesterday she hardly ate anything. Today she ate but very little. Just taking a shower wiped her out. She was wearing the same hospital gown when I saw her this morning. I told the rehab center thet they have to insist that she changes her clothes. She knew who I was but took a long time to say my name. the same with our 3 year old's photo.

I can see that she is exhausted. She wants to live. I don't know if she will even be able to tolerate another interthecal chemo. When do I know it's time to make the decision to transition to hospice? I fear that she will want to continue chemo forever. Her quality of life has been bad since February.

any advice? I told her that if she wants to visit home she has to eat and move and get stronger.

Thanks for reading and letting me vent. Everyone on this site has been wonderful. love and peace to all.
shari

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    hospice
    Talk with her doctors, Shari. They will be able to guide you regarding hospice in your state.

    It sounds like it is time to have the conversation.

    Hugs.
  • Barbara53
    Barbara53 Member Posts: 652
    #3
    taking over
    Shari, I am about where you are with my mother. The cancer is rapidly taking over, and she can hardly get out of bed. I have good family backup, but as of this weekend we are over our heads and need professional help.

    In addition to authorized hospice, which usually means chemo or other cure treatments be discontinued, a friend suggested an alternative, hiring private duty nurses with hospice experience. My brothers and I will be talking about both options later today.

    Are these scary days, or what? Wishing you the best today.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Hospice
    My husband continued treatment for several weeks after I would have, but I felt that it had to be his decision. It was the doctor who finally told him that the treatment was not helping. I then asked the dr. If it was time for hospice. I think you need to seek your dr.'s help in this. I had to ask our doctor to be brutally honest with us. Fay
  • palmyrafan
    palmyrafan Member Posts: 396
    #5
    Hospice
    Shari,

    My heart goes out to you. You are talking about something near and dear to my heart. Quality vs. Quantity. My husband and I have discussed this and I have made my wishes known. I also have a Living Will made out so my husband and doctors are well aware of what my wishes are when the time comes.

    I would speak with her doctors about your concerns and about the options available to you. They may suggest IV's for nutrition to help her gain her energy, or they may feel that hospice is the way to go.

    You are in my thoughts and prayers during this difficult time.

    Blessings,
    Teresa
  • UKLady
    UKLady Member Posts: 85
    #6
    I agree

    my husband Steve had lung cancer with mets to the brain-so I know your road- talk with the Oncologist. Ours advised Hospice and quality of life but if Steve managed to walk again unaided he could continue again to have chemo if he were strong enough and leave hospice care. This was a place called *hope* which he handed to Steve, and never ever give up on that. Steve wanted to live too, but we would say to people we chose the *lifestyle choice* of Hospice and later Hospice at Home.

    My heart goes out to you, your wife and your little one, but I can tell you this-over the last weeks of Steve's life we had some of our best and happiest days to make memories in the comfort of his own home despite the fragility of his condition. Hope this helps Shari

    peace from my home to yours always

    Lyndsey
  • coping in CA
    coping in CA Member Posts: 20
    #7
    Thank you all for your
    Thank you all for your input. I get conflicting messages from the docs. I think she is going to say she wants chemo until until the end. I am not pleased with the care she is getting now at the rehab facility. I am going to have a hospice evaluation tomorrow. She is still not eating and sleeps most of the day. I am scareed as I know she it too, but she is not able to express that to me. Just her personality.

    It is so emotionally draining and I need to find reserves for my son.

    Thanks again for your support and 'listening'.

    Prayers and hugs to all.
    Shari
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    coping in CA said:

    Thank you all for your
    Thank you all for your input. I get conflicting messages from the docs. I think she is going to say she wants chemo until until the end. I am not pleased with the care she is getting now at the rehab facility. I am going to have a hospice evaluation tomorrow. She is still not eating and sleeps most of the day. I am scareed as I know she it too, but she is not able to express that to me. Just her personality.

    It is so emotionally draining and I need to find reserves for my son.

    Thanks again for your support and 'listening'.

    Prayers and hugs to all.
    Shari

    Thinking of You
    My dad passed from EC in March 2010. His quality of life was non existant. He told us he was done. It was his decision to stop the treatments. We gave him our blessing. You have to go with your gut feelings. You know when enough is enough. Do you want your wife to continue living the way she is? I would also suggest you find another rehab facility for her if you are not happy with her current one. Let her future be her decision. I agree that it is time for hospice to step in. They are wonderful. They will help you to understand what you are feeling. They will help to prepare you both for the future. Hope this helps. Hugs to you all.
    Tina in Va
  • struggling sisters
    struggling sisters Member Posts: 5
    #9
    CLOSE TO YOUR SITUATION
    Wow, I just read your posting and some of the responses you received, it sounds so familiar only it's my mother and she has breast cancer metastized to the bone and multiple brain mets. She is in complete denial, she gets confused, she won't stop chemo but the chemo has destroyed her liver, she is now unable to walk at all, almost completely unable to write. Someone has to do everything for her and unfortunately that is me and my sister who lives an hour away with 3 small children, we are so overwhelmed, I work all day and have 4 sons myself so going to her house everyday after work until 2a.m. has not been working, I'm exhausted and she refuses to even speak of a nursing home, hospice or anything else. She does not have a living will, and keeps saying I don't want to do it. Her therapist says if she continues chemo that soon we will be feeding her and bathing her, (I can not do that), but if she stops chemo she can enjoy her life, she believes that she will live longer with chemo but she doesnt realize the quality of life she will have with the chemo. My sister and I have no idea what to do, and as of Monday evening we have been having to clean her up and everything else because of her bowels. I just wanted to write to let you know that you are not alone, I feel your pain and frustration, I hope all goes well for you and your family. Take care.
  • palmyrafan
    palmyrafan Member Posts: 396
    #10
    struggling sisters said:

    CLOSE TO YOUR SITUATION
    Wow, I just read your posting and some of the responses you received, it sounds so familiar only it's my mother and she has breast cancer metastized to the bone and multiple brain mets. She is in complete denial, she gets confused, she won't stop chemo but the chemo has destroyed her liver, she is now unable to walk at all, almost completely unable to write. Someone has to do everything for her and unfortunately that is me and my sister who lives an hour away with 3 small children, we are so overwhelmed, I work all day and have 4 sons myself so going to her house everyday after work until 2a.m. has not been working, I'm exhausted and she refuses to even speak of a nursing home, hospice or anything else. She does not have a living will, and keeps saying I don't want to do it. Her therapist says if she continues chemo that soon we will be feeding her and bathing her, (I can not do that), but if she stops chemo she can enjoy her life, she believes that she will live longer with chemo but she doesnt realize the quality of life she will have with the chemo. My sister and I have no idea what to do, and as of Monday evening we have been having to clean her up and everything else because of her bowels. I just wanted to write to let you know that you are not alone, I feel your pain and frustration, I hope all goes well for you and your family. Take care.

    Breast Cancer Mother
    I hope I'm not being too personal here, but have you and your sister checked out a Visiting Nurse's Association that can help your mother since you and your sister already have your plates full? Maybe one that can come at 9:00 p.m. and stay all night? I know they can be a bit pricey, but if your mom has insurance, they might be willing to help cover it.

    You and your sister are in my thoughts and prayers. This isn't easy on you I know. Whatever you decide, please don't forget to take care of yourselves. You both have children who need their mom too and sometimes making the tough choices seems impossible.

    Good luck.

    Peace,
    Teresa
  • struggling sisters
    struggling sisters Member Posts: 5
    #11
    palmyrafan said:

    Breast Cancer Mother
    I hope I'm not being too personal here, but have you and your sister checked out a Visiting Nurse's Association that can help your mother since you and your sister already have your plates full? Maybe one that can come at 9:00 p.m. and stay all night? I know they can be a bit pricey, but if your mom has insurance, they might be willing to help cover it.

    You and your sister are in my thoughts and prayers. This isn't easy on you I know. Whatever you decide, please don't forget to take care of yourselves. You both have children who need their mom too and sometimes making the tough choices seems impossible.

    Good luck.

    Peace,
    Teresa

    THANK YOU
    Thank you for the input and advice, I love this site, I am learning so much from all of you, my sister and I will definitely look into visiting nurses, thanks.

    Valerie
  • Barbara53
    Barbara53 Member Posts: 652
    #12
    struggling sisters said:

    THANK YOU
    Thank you for the input and advice, I love this site, I am learning so much from all of you, my sister and I will definitely look into visiting nurses, thanks.

    Valerie

    what would your mother do?
    Valerie, your situation sounds so similar to that of a friend who recently lost her mother to ovarian cancer. Even when her mother could no longer walk, she wanted to go to chemo. You and your sister should ask the oncologist to end treatment and explain that your mother is out of options. The oncologist will be happy to do this by phone. If your mother is like mine, she will do what the doctor tells her. Ask the doctor to remind your mother to sign the health care papers you and your sister have prepared for her. Have the forms filled out and ready. Any hospital or home health care agency can give you a set of forms. If you have a family lawyer, see about getting durable power of attorney, too.

    With or without the paperwork, you and your sister must start making decisions as if you were your mother, with all her faculties intact. What would she decide if she understood as much as you do?

    She would not decide to have her daughters going crazy neglecting their families and frantic all the time. I helped my mom with a bowel incident recently (she's end stage ovarian cancer with multiple mets), and I agree that this is not something I want to do on a regular basis. She would not want me to.

    With kids to look after, you will probably need Hospice and private nurses if you can afford them. From what I hear, good sitters with hospice experience can be hired for around $15 an hour. Good luck!

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