Things Caregivers Want You to Know

AnnaLeigh
AnnaLeigh Member Posts: 187 Member
edited March 2014 in Caregivers #1
Caregivers are called the "hidden patient" because they go through every process the cancer patient goes through, they suffer endless physical symptoms that do not get medical attention, and they have emotional burdens that are invisible to those who have never walked in their shoes. So here are a few things Caregivers want you to know -

** I am terrified just like the cancer patient. I have no assurances that my care will make a difference in the life expectancy of the care recipient and every decision I make can alter the outcome of my loved one's comfort.

**If you would not say or do something to the cancer patient - then do not say or do it to me. I am fragile right now. My world has been turned upside down. My future has crumbled and I have no idea how I will survive this right now because there is no time to think about myself - there is only enough time to think about the next appointment, the next medication, the next treatment...........

**I can't communicate effectively about what my needs are because I have been traumatized by a cancer diagnosis for someone I hold dear in my heart. If you want to help us please just call and ask "What can I do for you today?" because every single day brings a new set of problems to solve.

**Sometimes I just want to vent without anyone offering a solution, an opinion, or their judgement. One of the kindest things you can do for me is to hold my hand and just be silent until I get it all off of my chest.

** Please do not be scared or afraid of my tears and emotions. My moods change from day-to-day and I can go from being peaceful and happy to being exhausted, cranky and snapping at everyone.

**We really do not need or want to hear all of the stories you know about people who have died from cancer. It's all we can do to remain hopeful and positive at this point and we need to hear success stories if you know any.

**Before offering advice - ask yourself "Is this helpful, kind, and loving advice?"

Comments

  • ruthelizabeth
    ruthelizabeth Member Posts: 138
    #2
    One or two more
    Please don't say, "I'll call you" and then not have the time or desire to do it. If you don't think you'll do it, just listen, hug and leave.

    If you want to help, consider offering to do some of the everyday things that caregivers no longer have time or energy for. Can you take the car in for servicing or wash it? Would you be willing to prune or water the garden? Does the front porch need sweeping? Normal upkeep doesn't get done in abnormal times.

    If you are a close friend of the patient or caregiver, continue to be a close friend. Cancer isn't catching. Stop by and talk old times with the patient. It will cheer them up, give the caregiver a rest and show them that they're still connected to life even if there's a hostpital bed in the living room and meds everywhere you look.
  • nancyann3
    nancyann3 Member Posts: 173 Member
    #3
    Another....
    We are silent warriors. No, we do not act ourself and probably wont for sometime for we are on a mission that is a matter of life or death. So don't be afraid of me or run away from me, just be understanding and walk with me....
  • onhold
    onhold Member Posts: 23
    #4
    caregivers
    **Sometimes I just want to be ALONE, not that I don't love spending time with my sweetheart, but we both need to recharge from time to time.

    **Don't wait for us to tell you what can be done, if you see something to do, just do it.

    **By all means, bring us dinner ready to heat. Even if we are perfectly capable of cooking it is nice to not have to think of what to fix. But bring it in disposable or recyclable containers, cause I barely know what day it is, I won't remember who to return the containers to!

    **Mow the lawn any time it looks like it needs it, we would love to have that 'to do' removed from the list. Take out/in the garbage can. Little things can give a mental boost.

    **Don't tell me what a good caregiver I am, how strong I am, etc. I am just getting through the day, week, month. I am not going through what he is, but I would gladly change places because I can't stand to see his life taken away like it is. I am only doing what needs to be done to help him through it.

    **I can't think much about myself now. I don't have time to go to the doctor for me, I can't plan a vacation, I can't even buy tickets to a show, because things are always changing the minute I do make a plan. Don't ask me to plan anything.

    **Don't be afraid to joke with us. You have to laugh at the things that life hands you or else why live. Lemons & lemonade if you get the drift.

    **Go ahead and use phrases like "made it there in one piece" "I would't be caught dead" "alive & kicking", etc. These are not going to offend us.
  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    #5
    Please understand
    **Please understand that I am not able to return telephone calls or text messages in a timely manner. There are too many other priorities on my list right now.

    **Please understand that after talking to doctors, nurses, technicians, pharmacists, insurance companies, and my loved one, there are many times when I don't have enough energy left to communicate with even one more person. Please do not be offended when I don't take your calls on certain days.

    **Please understand that when you talk to my loved one on the telephone and they sound perky, lively, and energetic that this is no indication of how things really are. Our loved ones are usually able to talk briefly without giving away how bad the circumstances really are or how bad they have been. Please do not assume that things are great based on one short conversation.

    **Please understand that my house is just like every other home on this planet. We need clean clothes, grocery shopping, house cleaning, banking, errands, bills paid, prescriptions filled, meals cooked, yard work, home maintenance and repairs. If you are able to help and contribute to any of these tasks, by all means, let me know when you are available.
  • Missy245
    Missy245 Member Posts: 4
    #6
    AnnaLeigh said:

    Please understand
    **Please understand that I am not able to return telephone calls or text messages in a timely manner. There are too many other priorities on my list right now.

    **Please understand that after talking to doctors, nurses, technicians, pharmacists, insurance companies, and my loved one, there are many times when I don't have enough energy left to communicate with even one more person. Please do not be offended when I don't take your calls on certain days.

    **Please understand that when you talk to my loved one on the telephone and they sound perky, lively, and energetic that this is no indication of how things really are. Our loved ones are usually able to talk briefly without giving away how bad the circumstances really are or how bad they have been. Please do not assume that things are great based on one short conversation.

    **Please understand that my house is just like every other home on this planet. We need clean clothes, grocery shopping, house cleaning, banking, errands, bills paid, prescriptions filled, meals cooked, yard work, home maintenance and repairs. If you are able to help and contribute to any of these tasks, by all means, let me know when you are available.

    These are great!
    As a caregiver not by choice but my life. I have really enjoyed reading them and oh how so true. Thanks I would like to post them to everyone of friends what I have left.As the rest have avoided us like the plague.Keep it up!
  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    #7
    The Shock And Awe Of It All
    **Even after the initial shock of the cancer diagnosis wears off, there are many times when we still need emotional and physical support, no matter how much time has passed. There will be additional tests, scans, biopsies, and changes in treatment that will throw us back to the beginning and back to square one trying to deal with the anxiety. Three steps forward and two steps backwards !!

    **There are times when I feel like an infant again. Very dependent, emotional, and very incapable of making decisions. I can hardly deal with what is right in front of my face, much less try to deal with anything in the future. You and I can make plans for next week but don't take it personally when I have to cancel. It's not just One-Day-At-A-Time around here - It's One-Hour-To-The-Next. We never know what life may throw at us and we must adjust moment-by-moment.

    **If you not able to be there for me, I need to know why !! If you are unable or unwilling to be supportive, just tell me that. Don't leave me wondering why you disappeared from my life. It makes me wonder if it is an outright rejection of me. Answers are better than not knowing.
  • ruthelizabeth
    ruthelizabeth Member Posts: 138
    #8
    AnnaLeigh said:

    The Shock And Awe Of It All
    **Even after the initial shock of the cancer diagnosis wears off, there are many times when we still need emotional and physical support, no matter how much time has passed. There will be additional tests, scans, biopsies, and changes in treatment that will throw us back to the beginning and back to square one trying to deal with the anxiety. Three steps forward and two steps backwards !!

    **There are times when I feel like an infant again. Very dependent, emotional, and very incapable of making decisions. I can hardly deal with what is right in front of my face, much less try to deal with anything in the future. You and I can make plans for next week but don't take it personally when I have to cancel. It's not just One-Day-At-A-Time around here - It's One-Hour-To-The-Next. We never know what life may throw at us and we must adjust moment-by-moment.

    **If you not able to be there for me, I need to know why !! If you are unable or unwilling to be supportive, just tell me that. Don't leave me wondering why you disappeared from my life. It makes me wonder if it is an outright rejection of me. Answers are better than not knowing.

    Oh, yes!!!
    The last one is so true. It applies not only to cancer, but to life in general and certainly to the time after someone dies.
  • geotina
    geotina Member Posts: 2,111 Member
    #9
    Oh one more
    I think I have posted this someplace on the boards but here is one that just drives me nuts. I know people mean well, but come on........."Well, at least he has the good cancer". Sorry, but Stage IV Colorectal Cancer is not a good cancer. Survival for several years is very low. Recurrence is horribly high, like 80% or more. So please, don't tell me this is the "good cancer". It is like telling someone with breast cancer, "well, that is just a mound of fat anyway..........."


    Take care everyone - Tina

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