How can a survivor make you as the Caregiver's task less stressful

RE
RE Member Posts: 4,591 Member
edited March 2014 in Caregivers #1
To all the caregivers out there, as a survivor of several battles of cancer I am wondering what a survivor can do to make your job as caregiver easier or at least less stressful. I hope not to have to go down this road again, but that said I feel we can all benefit from this question. Just so you are aware I did assist in the care giving of my sister and my mother, but I was not the sole caregiver. My husband was my primary caregiver and my children helped a tad. I realize it was quite stressful for him, I realize it even more so after reading more of your posts. So, that said please take a moment to chime in and enlighten me.

RE

Comments

  • zahalene
    zahalene Member Posts: 670
    #2
    Communicate, Cooperate, Congratulate
    I have been both the survivor and the sole caregiver (to both my parents).
    The issue that comes first to my mind is communication. When I was being cared for I sometimes did not get what I wanted just when I wanted it (all my real needs were adequately covered), and I realize now that I should have taken more of the responsibility in telling people around me more specifically what they could do to help me. By the same token, as I now care for my dad, and as I cared for my mom until she passed, it is even more important to the quality of care I can give that I know specifically what dad wants. He never complains or demands, and even neglects to tell me when the pain in his knees is escalating, for example, until it gets to the point of being unbearable for him.
    One other thing I think the survivor should keep in mind is the need for domestic arrangements that are as convenient as possible for the caregiver. Do you need to move your bedroom downstairs, for example? Or can you swallow your pride enough to use a wheelchair or walker in public to ease your caregiver's need to lift and/or support you? Your care person has finite energy resources and when they are depleted you both suffer.
    And finally, it will help tremendously if the survivor makes a real effort to show appreciation to the caregiver. It is easy to become self-absorbed and even selfish when battling a debilitating illness, but we sometimes just need to 'cowboy up'.
    God bless all survivors and caregivers.
  • terato
    terato Member Posts: 375
    #3
    Za pretty well covered it, as usual.
    I would only add, especially for male survivors, that "we" need to be aware when the fear is getting to us and be candid about it with our caregivers, and stop the passive-aggressive stuff, the silences, and the grumbling. "We" need to consider our caregivers are partners in our progress towards the cure, not adversaries.

    Love and Courage!

    Rick
  • slickwilly
    slickwilly Member Posts: 334 Member
    #4
    terato said:

    Za pretty well covered it, as usual.
    I would only add, especially for male survivors, that "we" need to be aware when the fear is getting to us and be candid about it with our caregivers, and stop the passive-aggressive stuff, the silences, and the grumbling. "We" need to consider our caregivers are partners in our progress towards the cure, not adversaries.

    Love and Courage!

    Rick

    caregivers
    I have been on both sides as well. When we have cancer its easy to get self centered. It seems everything revolves around our symptoms, treatment, appointments, diet and medications. But just as important is the caregiver that needs a few hours a day to keep life in perspective. Watching someone suffer 24-7 is mental abuse that can take years to get over if you ever do. Many times the person with cancer is against this and wants their spouse or signigicant other with them all the time. So I would suggest that this is an issue that needs to be addressed early in cancer treatment before it becomes an issue that is hard to deal with later. I think we have all seen it many times on this discussion board. Slickwilly
  • lily33
    lily33 Member Posts: 27
    #5
    Just try and understand that
    Just try and understand that as caregivers we are hurting too. Not physically (and in all the other unimaginable ways) like survivors, but mentally. It's horrible to watch someone you love suffer every day. It makes you feel weak and helpless.
  • RE
    RE Member Posts: 4,591 Member
    #6
    slickwilly said:

    caregivers
    I have been on both sides as well. When we have cancer its easy to get self centered. It seems everything revolves around our symptoms, treatment, appointments, diet and medications. But just as important is the caregiver that needs a few hours a day to keep life in perspective. Watching someone suffer 24-7 is mental abuse that can take years to get over if you ever do. Many times the person with cancer is against this and wants their spouse or signigicant other with them all the time. So I would suggest that this is an issue that needs to be addressed early in cancer treatment before it becomes an issue that is hard to deal with later. I think we have all seen it many times on this discussion board. Slickwilly

    :-]
    Slickwilly your response reminded me of how much I hated it when my husband had to go to work leaving me home alone until my high school age children came home. He would come home for lunch to check on me and he called a lot. I never voiced how much I hated it because it was really his only "out". At the time I was in treatment for a little over a year. Thank you for your comments, I agree it is very important for the caregiver to get some "away" time to refuel so to speak.
  • RE
    RE Member Posts: 4,591 Member
    #7
    zahalene said:

    Communicate, Cooperate, Congratulate
    I have been both the survivor and the sole caregiver (to both my parents).
    The issue that comes first to my mind is communication. When I was being cared for I sometimes did not get what I wanted just when I wanted it (all my real needs were adequately covered), and I realize now that I should have taken more of the responsibility in telling people around me more specifically what they could do to help me. By the same token, as I now care for my dad, and as I cared for my mom until she passed, it is even more important to the quality of care I can give that I know specifically what dad wants. He never complains or demands, and even neglects to tell me when the pain in his knees is escalating, for example, until it gets to the point of being unbearable for him.
    One other thing I think the survivor should keep in mind is the need for domestic arrangements that are as convenient as possible for the caregiver. Do you need to move your bedroom downstairs, for example? Or can you swallow your pride enough to use a wheelchair or walker in public to ease your caregiver's need to lift and/or support you? Your care person has finite energy resources and when they are depleted you both suffer.
    And finally, it will help tremendously if the survivor makes a real effort to show appreciation to the caregiver. It is easy to become self-absorbed and even selfish when battling a debilitating illness, but we sometimes just need to 'cowboy up'.
    God bless all survivors and caregivers.

    Communication
    A simple enough idea, yet so many of us have a difficult time being successful at it. I agree Zah, communication is vital to both the caregiver and the survivor. Thank you for your comments I truly appreciate them.
  • zahalene
    zahalene Member Posts: 670
    #8
    lily33 said:

    Just try and understand that
    Just try and understand that as caregivers we are hurting too. Not physically (and in all the other unimaginable ways) like survivors, but mentally. It's horrible to watch someone you love suffer every day. It makes you feel weak and helpless.

    Yes, lily...
    Understanding on the part of the survivor toward the caregiver is important. But I don't think we (caregivers) can depend on that alone to get us through the trauma of long-term caring for a loved one. There almost has to be some support from outside the situation...counseling, support groups, csn. :)
  • terato
    terato Member Posts: 375
    #9
    slickwilly said:

    caregivers
    I have been on both sides as well. When we have cancer its easy to get self centered. It seems everything revolves around our symptoms, treatment, appointments, diet and medications. But just as important is the caregiver that needs a few hours a day to keep life in perspective. Watching someone suffer 24-7 is mental abuse that can take years to get over if you ever do. Many times the person with cancer is against this and wants their spouse or signigicant other with them all the time. So I would suggest that this is an issue that needs to be addressed early in cancer treatment before it becomes an issue that is hard to deal with later. I think we have all seen it many times on this discussion board. Slickwilly

    The V.A. offers a "Respite for the Caregiver" program.
    Slickwilly,

    Many Veterans' Administration hospitals and treatment facilities offer "Respite for the Caregiver" programs, taking the patient for as long as two weeks so that the primary caregiver can catch a breather and re-energize. My mother took full advantage of this program following my father's stroke. It really helped both my parents, especially my father, who appreciated my mother even more when he came home.

    Love and Courage!

    Rick
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator
  • SonSon
    SonSon Member Posts: 174
    #11
    Tell me about the pain...
    For me as a caregiver it would be helpful if I was told about the pain - are you in pain, how much, can I give you a pain pill...
    My mother in law will be all "ooh ooh ow ow..." and I ask her if she is hurting and where. She sometimes will tell me. Then I ask her if I can bring her a pain pill and she'll say, "no, not now..." and I am thinking "when, after you are screaming your head off???".
    There is nothing wrong with saying there is pain and taking something for it.
    It is absolutely awful to see a person in pain and not be able to do anything for it - especially if the person is not giving feedback about the pain or accepting pain medicine.
    Fatima
  • MichelleP
    MichelleP Member Posts: 254
    #12
    SonSon said:

    Tell me about the pain...
    For me as a caregiver it would be helpful if I was told about the pain - are you in pain, how much, can I give you a pain pill...
    My mother in law will be all "ooh ooh ow ow..." and I ask her if she is hurting and where. She sometimes will tell me. Then I ask her if I can bring her a pain pill and she'll say, "no, not now..." and I am thinking "when, after you are screaming your head off???".
    There is nothing wrong with saying there is pain and taking something for it.
    It is absolutely awful to see a person in pain and not be able to do anything for it - especially if the person is not giving feedback about the pain or accepting pain medicine.
    Fatima

    My husband tried Norco's
    My husband tried Norco's first...made him sick. Then we went to Darvocet which did nothing, then to Darvon which did nothing....now oxycodone which will put him to sleep within an hour and he will stay asleep for at least the next 12hrs.:( Will continue to see if we can find something. But in the meantime, I have a "ton" of various medications. The pharmacy won't take them back and I heard you can't flush them. What do people do with these meds that are useless?
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #13
    MichelleP said:

    My husband tried Norco's
    My husband tried Norco's first...made him sick. Then we went to Darvocet which did nothing, then to Darvon which did nothing....now oxycodone which will put him to sleep within an hour and he will stay asleep for at least the next 12hrs.:( Will continue to see if we can find something. But in the meantime, I have a "ton" of various medications. The pharmacy won't take them back and I heard you can't flush them. What do people do with these meds that are useless?

    medicine disposal
    From other sources:

    1. Throw in the trash.

    To do this, remove pills from their original containers. If you are worried about illegal reuse, mix the pills with coffee grounds or kitty litter and place in an empty can or sealable bag.

    2. Utilize take-back programs.

    Take advantage of take-back programs, which allow you to bring unused drugs to a central location for proper disposal. Ask your local pharmacy or municipal waste collection system if they have such a program.

    (From a John Hopkins White Paper, 2008)

    From a different source with some concurrence:

    1. Call your local pharmacy to find out if there are any drug buyback programs or approved collection programs in your area. Your pharmacy may be able to send discarded medications to a registered disposal company.

    2. Pour liquid medication or pills (that you have crushed first) into a sealable plastic bag or an empty can. Add a substance like kitty litter, sawdust or used coffee grounds to make the medication less appealing to kids and pets. Seal the container and put it in the trash.

    Before recycling or throwing away your empty medication containers, remove the prescription label or any personal information.

    Hope this helps.

    Take care,

    Joe

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