• Angela's Avatar

    Angela wrote on GetMyLifeBack's wall

    Thank you for the tips. The first hospice we tried said it was ok to go to the doctor and hospital for something not related to the cancer, (pneumonia, broken bones). Second hospice connects everything to the cancer and sees no reason to personally seek the doctor or hospital. Frustrated! I'm also having problems getting any of the doctors to pinpoint how bad the metastasis is and where it's at. It appears once a person is on hospice those questions aren't supposed to be asked. Any ideas?

    1 Comment
    • GetMyLifeBack's Avatar
      GetMyLifeBack

      Well, those questions probably aren't being answered because once you go on hospice, you aren't pursuing treatment. That being said, they should have given you this information before you made the decision to go on hospice. You can always request the pathology report in writing. This will probably have a lot of technical language in it but it will describe what the diagnosis is, and where the metastises are. In terms of choosing a hospice, go with the one with whom you feel you have the best relationship. Much like choosing a doctor, you have to go with the one you trust the most. Bedside manner, especially at this stage of survivorship is EVERYTHING. If you are not sure you want to stop treatment, talk to your doctor or get a second opinion about palliative care and see if that is an option. That is still a home based intervention, but you get more treatment than just being kept comfortable.

      over 4 years ago
  • Angela's Avatar

    Angela wrote on GregP_WN's wall

    Thank you. I will ask as things present themselves. Am trying respite care for a few days to try and sort some things through.

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  • Angela's Avatar

    Angela asked a questionBladder Cancer

    What am I headed for as the caregiver? What can I expect as "normal?" Hospice has been of little help so far.

    • GregP_WN's Avatar
      GregP_WN

      We took care of both Mom and Dad in hospice care. Dad was in a nursing home and had hospice there, with a little help from the nurses at the nursing home. We were there 24 hrs a day and done most everything. with mom, we had her at home, hospice came by 3 times a week, until it got close to the end, then it was dailey or anytime we needd them. Our hospice group was great. I'm sorry your having trouble. Let them know your concerns, when we had questions we got answers, until we were satisfied. I hope your process gets better.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      Angela, what specific questions do you have, I may be able to answer more.Just let me know.

      over 4 years ago
    • GetMyLifeBack's Avatar
      GetMyLifeBack

      Every situation is different and I am not sure if there really is a normal. I definitely suggest you go to caregiver.com and caregiver.org for support as well. The National Coalition of Cancer Survivors has a great CD series that you can get for free. On the Dying Well CD they talk about what to expect from Hospice and Palliative. Hospice usually focuses on keeping someone comfortable when they are no longer able to willing to pursue aggressive treatment. Palliative care is a little bit more intensive, but again, you are trying to keep the surivivor out of the hospital. Hospice is usually considered if someone is expected to live for 6 months or so, but often people do well on hospice and survive much longer than anyone expected. It really depends on your specific situation and what complications you are dealing with. If you have a specific question, let us know.

      over 4 years ago
  • Angela's Avatar

    Angela shared an experience

    Other Care (Trying a second hospice)

  • Angela's Avatar

    Angela shared an experience

    Oh No (Hospice didn't live up to their PR, couldn't suply suppies/drugs in timely manner)