• KarenG_WN's Avatar

    Caregivers - what do you wish you knew at the beginning of your cancer journey that you had to learn along the way?

    Asked by KarenG_WN on Tuesday, June 19, 2012

    Caregivers - what do you wish you knew at the beginning of your cancer journey that you had to learn along the way?

    We're looking to pull together some really helpful, practical tips from "expert" caregivers to share with those are just trying to figure out where to begin.


    11 Answers from the Community

    11 answers
    • insanejane's Avatar

      I had a hard time learning how to work with the doctors, getting appointments and labwork and tests in the wrong order. I wish i knew then to tell healthcare people what Dad wants and ask for help. i always felt like i was bothering them, but now i know that its their job, they are there to help, and most are happy to.

      over 4 years ago
    • caissg's Avatar

      I had a hard time learning the health care system. The scare of cancer they put into us was wrong and unfounded. I wish the system was more truthful and honest. Not ALL cancers are same and fatal. If treated properly, cancer is tolerable. It is wrong to scare people with the word cancer. Today, I have found a host of resources and accurate information about the condition. I wish a tenth of that was made available to us at time of diagnosis. We cannot avoid the illness but at least we can make it a cushioned landing. I am thankful to all the support groups and others for providing the resources and information. Make joining a support group the FIRST priority - almost as critical as the treatment for your long-term health. All the best.

      over 4 years ago
    • nancyjac's Avatar

      Patience and endurance. In the beginning I tried to treat cancer and all that it entailed as a temporary inconvenience, rather than an integrated part of my life that would change my life permanently.

      over 4 years ago
    • nancyjac's Avatar

      ooops....sorry, I really didn't read the OP correctly. Still suffering from chemo brain. My post was from a patient's perspective. not a caregiver's/ But I have basically been my own caregiver and I think it applies as a caregiver as well.

      over 4 years ago
    • shauna0915's Avatar

      I was so involved in my fathers care that I learned everything as we went along and I asked 10,000 questions every time we talked to a doctor. I interpreted "doctor speak" into common terms so my dad could understand what they were telling him and I translated "dad speak" into terms so the doctors knew exactly what he was asking. Dad asked "partial" questions...by that I mean he asked a short question expecting a direct answer, but often the doctor misunderstood the meaning behind the question. I can't tell you how many times I had to call a doctor back into the room to explain to dad the FULL answer to what he was really asking.

      I also quickly learned that some doctors are "dump and run" doctors. They bombard you with a wealth of information that is waaay over your head then run out the door. I learned to stand in front of the door so the doctor couldn't leave until we were done with questions and making sure they fully explained things so we could understand them.

      The biggest thing I wish I knew when I started as a caregiver that I know now is it can't be all business all the time. Sometimes I forgot to just spend time with my dad instead of always taking care of him and protecting him. I was a total control freak and was almost militant when he had visitors...washing and sanitizing their hands, wearing a mask if they had a cold or the sniffles...I'm sure I was insufferable at times.

      I also wish I had known more about the end and the liquid morphine. I asked everything I could think to ask when dad went on in-home hospice care. Hospice was GREAT with dad and I can't say enough good things about the team we had. I just wish I had known what the liquid morphine really did and not just that it was to keep him comfortable. I had a huge breakdown when I found out that it actually shuts things down. I think people should be told the truth about the role liquid morphine plays in the final stages of life and not just that it is there to keep them comfortable until they pass on.

      I hope what I've learned can help other caregivers.

      over 4 years ago
    • MarnieC's Avatar

      When I was taking care of my mother (she had breast cancer that had metastasized to her bones) and we'd gotten to the point where she didn't want any more chemotherapy, we were assigned a visiting hospice care nurse who was very sympathetic and spoke to my mother in comforting terms. I wish, however, that she had taken me aside and told me what to look for so I could have been more emotionally available for my mother. I was so determined that we were gonna beat this and so involved in the fight that I failed to see she was a little scared and more than a little sad to be losing her battle. It was a hard time.

      over 4 years ago
    • joyce's Avatar

      I wish I had known that I would be able to get through this. After having a beautiful marriage of 36 years, two great kids and a wonderful granddaughter and never having had to face any really serious problems, my husband was diagnosed with pancreatic cancer. I didn't think I would be able to handle it and almost fell apart. Somehow you do find the strength to handle it and find you can go on.

      over 4 years ago
    • mamajltc's Avatar

      We have been going through this journey for 3 years this Sept. My husband has stage 4 colon cancer (doing well). We are so lucky to have him being treated at an incredible hospital here in Boston, that after a few months, we trust everything is being done. What I did not know, is that cancer affects your entire life. My (now 17 year old) daughter had terrible problems going to school after he was diagnosed. My (now almost 20) year old son did as well. I wish there were better tools to handle the emotional problems of older kids. I did not know how much of a toll it would affect us financially. I wish I had know more resources for assistance, and better ways to balance our mounting bills. It was and continues to be a learn as you go.
      But one thing that was a surprise, that I am glad i did not know, is how a love can go stronger through such tough times. I did not know that I could love him even more, but because of his amazing strength, courage, humor and grace, I now know that indeed, there was even more to love in this person that I have been married to for over 22 years.

      over 4 years ago
    • Madison's Avatar

      I wish I knew that I could survive my loved one's diagnosis

      over 4 years ago
    • FreeBird's Avatar

      It's okay to feel confused by the massive amount of information thrown at you in a short period of time. You're not going to complete medical school in a week, so it's good to ask lots of questions without feeling like a dummy.

      I wish I knew where to find help with material resources to help with care at home-- such as wheelchair, shower bench, and other helpful equipment. The expenses can be overwhelming.

      over 4 years ago
    • pinklady's Avatar

      I found that altho I read all they gave me, I was not prepared for the taste of metal!!
      Lemonade worked awesome. Nausea was a big factor and I now keep chicken noodle soup on hand!. and popsicles..

      over 4 years ago

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