When the person with cancer declines services at home

Caregiver1963
Caregiver1963 Member Posts: 46
edited March 2014 in Caregivers #1
My husband has brain cancer. His tumor is continuing to grow despite chemotherapy. He was receiving home care : physical therapy, occupational therapy and home health aide services, but when he got the news about the growth of the tumor he cancelled the services.
He was supposed to start a new chemotherapy regime last week, but the morning of his appointment he cancelled it as I he didn't like the appointment time. Due to weakness of the right side of his body he needs assistance with personal care, meals amd medication administration. Since he is no longer getting VNA services he is no longer doing exercises and is getting weaker- which I am sure is also related to his tumor growing. I have asked him to allow the home care services back in. He is adament with declining these services, even though I told him I am exhausted working full time, recovering from my own cancer surgery last month and meeting his needs. He on the one hand will comment on my 30 pound unintentinal weight loss over the past year but when I excplain to him it is stress related he states I am wrong it is because I exercise. I only wish I had time to exercise! I have spoken with his oncologist office a few times over the past week and told them I need help and don't know what to do. The oncologist office recommended a family meeting which is hopefully to be scheduled this week. My husband has 3 siblings but their involvement is sporadic. They think they are helpful with telling me what to do . They are aware of the family meeting. My husband told me today that he spoke with one of his siblings this weekend about the meeting and as a result of the conversation he states he will not be going to the meeting as it will only be about bad feelings. My family feels that I need to give him an ultimatum- he either needs to accept services at home or he needs to go live with a family member ( he has siblings that do not work). I feel very conflicted about this situation. He is very worried about his siblings being in conconvenienced and is mad when I ask them for help- I only wish he was half as concerned about me.
I am sure I am not the only one who has been in this situtation- any advice would be appreciated!
Thank you

Mary

PS. I am getting support for my self with counseling and an antidpressant

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    How do you do it?
    Mary, I don't know how you are wearing all these hats and managing to make it through the day. The idea of a family meeting is a good one, because it will bring home to everyone the fact that your husband is not making rational decisions about his care. You have nothing to lose and much to gain. There also may be unknown alternatives, such as inpatient hospice care if that is appropriate.

    A friend's mother died of brain cancer, and it changed her personality, making an otherwise pleasant and considerate woman extremely volatile and angry. Stacy held health care proxy, so when things got bad she called in hospice. She says she will never forget that day, because her mother wailed "I don't know why you're doing this to me!" The hospice people had seen it all before and dealt with the problem beautifully.

    Helping a loved one approach the end of life can't be done alone. Good luck bringing in others to lighten your load.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Welcome to our Caregiver Family
    Hi Mary,
    My heart goes out to you. It is not easy doing all of this on your own. I agree that you should call in hospice. It seems that your husband is at that point where he can not make his own decisions. I do not feel that his siblings are even on board with his whole situation. Involving them might just make matters worse. Hospice will help to teach you both what it to be expected in his near future. It is his decision whether or not to continue his treatments, but possibly not in his frame of mind. Best of luck to you. Prayers go out to you and your husband. Let us know how things are going.
    Tina
  • Caregiver1963
    Caregiver1963 Member Posts: 46
    #4
    Tina Blondek said:

    Welcome to our Caregiver Family
    Hi Mary,
    My heart goes out to you. It is not easy doing all of this on your own. I agree that you should call in hospice. It seems that your husband is at that point where he can not make his own decisions. I do not feel that his siblings are even on board with his whole situation. Involving them might just make matters worse. Hospice will help to teach you both what it to be expected in his near future. It is his decision whether or not to continue his treatments, but possibly not in his frame of mind. Best of luck to you. Prayers go out to you and your husband. Let us know how things are going.
    Tina

    Thank you got your support
    Thank you Barbara and Tina for your kind words and support. At his appointment yesterday we learned that there is noting more that can be done to treat the cancer. The treatment now will focus on symptom management. He actually was admitted directly to the hospital and will start receiving services through the wonderful palliative care service at our hospital. We are having another family meeting on Monday to hear from the family members about what everyone can commit to for helping if my husband comes home with hospice. If there is not enough support to meet his needs we will need to look at other options like a hospice house. I will feel terrible if I am not able to bring him home. But I know that the best place for him to be is where he can get the best care and that may not be home as I need to continue to work.
    Mary
  • Caregiver1963
    Caregiver1963 Member Posts: 46
    #5
    Tina Blondek said:

    Welcome to our Caregiver Family
    Hi Mary,
    My heart goes out to you. It is not easy doing all of this on your own. I agree that you should call in hospice. It seems that your husband is at that point where he can not make his own decisions. I do not feel that his siblings are even on board with his whole situation. Involving them might just make matters worse. Hospice will help to teach you both what it to be expected in his near future. It is his decision whether or not to continue his treatments, but possibly not in his frame of mind. Best of luck to you. Prayers go out to you and your husband. Let us know how things are going.
    Tina

    Thank you got your support
    Thank you Barbara and Tina for your kind words and support. At his appointment yesterday we learned that there is noting more that can be done to treat the cancer. The treatment now will focus on symptom management. He actually was admitted directly to the hospital and will start receiving services through the wonderful palliative care service at our hospital. We are having another family meeting on Monday to hear from the family members about what everyone can commit to for helping if my husband comes home with hospice. If there is not enough support to meet his needs we will need to look at other options like a hospice house. I will feel terrible if I am not able to bring him home. But I know that the best place for him to be is where he can get the best care and that may not be home as I need to continue to work.
    Mary
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    Caregiver1963 said:

    Thank you got your support
    Thank you Barbara and Tina for your kind words and support. At his appointment yesterday we learned that there is noting more that can be done to treat the cancer. The treatment now will focus on symptom management. He actually was admitted directly to the hospital and will start receiving services through the wonderful palliative care service at our hospital. We are having another family meeting on Monday to hear from the family members about what everyone can commit to for helping if my husband comes home with hospice. If there is not enough support to meet his needs we will need to look at other options like a hospice house. I will feel terrible if I am not able to bring him home. But I know that the best place for him to be is where he can get the best care and that may not be home as I need to continue to work.
    Mary

    Bad news, but yet good news
    Hi Mary,
    You are most welcome. I was happy to see that he is being so well taken care of at the hospital. You are right in thinking the place he needs to be is where he is getting the best care. This has to put you both at some peace. You know you have all tried your best to beat this. There does come a time when it has to stop. You husband should already know that. My dad did. They just know. You have been a wonderful wife and caregiver. Do not ever feel any guilt. The best of luck to all of you. Let us know how you make out. Thinking of you.
    Tina(hugs to you and your husband)What is his name?
  • Barbara53
    Barbara53 Member Posts: 652
    #7
    Caregiver1963 said:

    Thank you got your support
    Thank you Barbara and Tina for your kind words and support. At his appointment yesterday we learned that there is noting more that can be done to treat the cancer. The treatment now will focus on symptom management. He actually was admitted directly to the hospital and will start receiving services through the wonderful palliative care service at our hospital. We are having another family meeting on Monday to hear from the family members about what everyone can commit to for helping if my husband comes home with hospice. If there is not enough support to meet his needs we will need to look at other options like a hospice house. I will feel terrible if I am not able to bring him home. But I know that the best place for him to be is where he can get the best care and that may not be home as I need to continue to work.
    Mary

    I envy you that oncologist
    What a relief you must feel! I do envy you the doctor and team who stepped up to lay out the facts and help assemble needed resources.

    Please do not feel bad if it turns out that you can't care for your husband at home. You've been doing that, for a long time, and it's not the only way. My sister-in-law's mother passed away of cancer in a hospice center, and it was really a nice place compared to hospitals. Family and friends could come and go 24/7, and it was generally very quiet and peaceful. If such a facility exists in your area and a bed is available, please go have a look. It might be the best for everyone involved, and you would be able to get some sleep once in a while.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #8
    Caregiver1963 said:

    Thank you got your support
    Thank you Barbara and Tina for your kind words and support. At his appointment yesterday we learned that there is noting more that can be done to treat the cancer. The treatment now will focus on symptom management. He actually was admitted directly to the hospital and will start receiving services through the wonderful palliative care service at our hospital. We are having another family meeting on Monday to hear from the family members about what everyone can commit to for helping if my husband comes home with hospice. If there is not enough support to meet his needs we will need to look at other options like a hospice house. I will feel terrible if I am not able to bring him home. But I know that the best place for him to be is where he can get the best care and that may not be home as I need to continue to work.
    Mary

    Chiming in
    I decided to chime in although the advice and support you have gotten from Tina and Barbara has been really good.so there is not much I can add. I just wanted to let you know that I have been reading your posts and support you 100%. You are doing what is right and everything you can do for your husband. Getting him the best care possible is always right. Just follow your heart and do your best. That is all we can ask of ourselves. Take care, Fay

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