What you need to know about palliative care and dying at home

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  1. In lasting Pain

    My Mom died recently after a long bout with stomach cancer. Her husband, my sister and I did palliative care in her home. That was anything but a pleasant experience. The levels of paranoia and delirium reached due to starvation and dehydration were beyond our means of care. Nurses came daily and adjusted her medications as needed which kept Mom comfortable but no one expected her to morph into this ” nasty” being she became. I was told to “Shut up ” and get the “f” out of her house because she couldn’t stand my voice and I was weak! She also”gobbed” into a Kleenex and tried to wipe it on my face! Many other memorable moments as well throughout the course of the 3 week live in care I gave. Prior to Moms’ illness we were close and good friends! What a horrible memory to recall now that she has passed. Perhaps the type of illness dealt with makes a difference to the experience shared. I would not recommend in home care to a patient who is not able to eat or drink as it is a slow death with horrible consequences.

    • Barrie

      My mother is dying of colon cancer. If you don’t recommend in-home care, what do you recommend?
      Thank you.

  2. Heather

    I want to leave a positive comment about dying at home. My father is in the final stages of metastic prostrate cancer and we have all along managed, so that he can die at home. It is not easy; there is much work co-ordinating in-home service across all the agencies, but it is not impossible.
    My father hates all the ‘assessments’ he has to do (as every agency requires an assessment and he resents talking about his health history over again across five or six different agencies).
    However, my dad is in a familiar setting, with his family, and friends can come visit him in his home.
    It is intimate (vs clinical) and worth trying to orchestrate if this is your family member’s wish.
    Good luck to you all.
    Heather (rural eastern ontario)

    • Lisa

      How did they know it was the final stages as my husband is at home with the same thing and I’m so confused and scared by everything. What are his symptoms in last stages? It would be of great help to me to know. Thx so much and God Bless your family during this time.

      • Geni Irlam

        I have similar concerns Lisa…I just don’t know what to expect anymore

    • Liza

      Thank you (and every one else) who has taken the time to share personal details and opinions about the various scenarios that can be encountered when choosing to assist someone who wishes to die at home. I am contemplating moving a dying relative from a Toronto hospital, where he is alone, to rural eastern ontario for final months of life.
      did you find that you had all the necessary resources available to you in your location?

  3. Jim

    Comfort Life and other sources make the case that a stay in a move to a local retirement home offers a “best of both worlds” solution for seniors facing a terminal diagnosis. Nursing and clinical care is on hand in what is, essentially a home-like environment. Time and time again, this care is shown to extend life and optimize comfort. It’s quieter than most hospitials and much cleaner and safer than most homes. Learn more at http://www.comfortlife.ca/palliative-care.php

  4. Kerri

    When Mother was diagnosed with terminal cancer, we were told she had perhaps a day, perhaps a few days, perhaps as long as three weeks to live. I was not willing to leave her in a hospital room attached to wires and tubes. with that institutional setting dictating her last hours. I determined to bring her home.
    My own doctor spoke to me in ER and told me he fully supported my choice and that if I needed help at any time to call his office and he would arrange it.
    Oxygen was laid on for her, and CCAC arranged to have caregivers come in to provide respite for me during the evening and overnight. An ambulance brought her home; the paramedics set up the oxygen flow so she had the best results, then wished us well as they left.
    Through the afternoon and early evening of that day she lay in a coma, her cat curled up with her, the dogs lying watchful beside her bed. At six o’clock a favourite PSW arrived to sit with her – we kept talking to her because we knew she heard us (she would react to someone leaving the room and to silence), favourite music on the stereo. I took a short rest as I had been up since seven the morning before ( we had taken her to ER around midnight and been there until mid-afternoon, the whole time I sang to her the songs she loved to hear). The dog and cat stayed with her and Sally, family members kept wandering in to spend time with her, from toddlers to their parents, four generations kept her company.
    Around seven someone found a hockey game on the television – not her Leafs, but a hockey game. She had been a fan since early childhood when they listened to Foster Hewitt on the radio and went to the local rink to cheer on the local team. We were a family and close friend watching the game with her, when Sally noticed she had slipped away. The children were not frightened by the experience; their great-grandmother had slept away into her future, as the three-year-old told us,’busy rocking the babies no one had wanted.’
    As Canadians we avoid death; we do not think about it, we do not talk about it. We avoid it totally. Time was when death was a part of family life. Elderly family members lived with younger relatives and their children sharing their experiences and knowledge, caring for the younger children while the adults were busy; time was when family meant family. Death was a natural part of life’s events, as it ought to be.
    This was a beautiful experience – and I have shared only some of it. It is as I plan mine to be — the grand-daughters with their guitars singing me on my way as I sang to Mother for that long night before she came home…

    • Paul Taylor

      Thank you for sharing the story of your mother. I am glad to hear her finally time on this Earth was a meaningful experience.

  5. Gai

    My dad has been diagnosed with hepatocellular carcinoma(liver cancer), 2 days ago. His tumor is large enough that there are no options other then palliative care. I lost my mom 1and1/2 yrs back and he insisted staying in the same house after her passing, he lives alone in India. My older sister lives in India about an hour away from him but he has insisted on living alone after my mom’s passing. We live in Ontario and my husband is a physician. We are willing to bring him here and pay for palliative care at home. What should I expect at the last stages of his cancer, is there a set time for this type of cancer?
    Also if there are any organisations that I can contact to get more information? Thank you all and best wishes. Gai

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