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  1. #1

    ? Re Name of this Forum

    Kate posted some excellent thoughts in the 'introductions' topic; I thought they merited a topic of their own. Here are Kate's thoughts:

    "Jackie, I've been thinking about the name of this forum since I first looked at it . . . I love the forum, the exchange of stories, the way we can hook up so effortlessly, the way I can be sure you all will know what I mean. But (as I've told you a boring number of times!) I've never thought of myself as a "caregiver"--and for months I resisted joining the forum for that reason.

    If your injured loved one is independent, how can you call yourself a "caregiver"? All of us know what that term can imply: transfers, ROM, B&B, dressing, etc. I think that there are for sure emotional/psychological issues all family members face-but quite a few of us aren't caregivers.

    We're spouses, siblings, parents, significant others of independent people who live with disability. The name of this thread should be changed. IMHO"

    _____________
    Tough times don't last - tough people do.

  2. #2
    This is a reply that KDK (Kath) beat me to by about a minute!

    "KDK - member

    posted Nov 05, 2003 09:07 PM

    Kate, I have recently learned that being a caregiver does not necessarily entail regular, repetetive care for a loved ones physical needs. I have met folks who see themselves as caregivers, those married to alcoholics, parents of children with mental retardation, those whose spouses have chronic conditions. Though I need not care for my husband nearly to the extent that I once had, I still must be ready to pitch in at the mere nod of any problem (have one right now). More so than I ever felt before his SCI, I feel always on edge, waiting; waiting for the next incident that requires my assistance. What would you call us, if not caregivers?

    Kath "

    _____________
    Tough times don't last - tough people do.

  3. #3
    At the time I joined CareCure, which was then Spinewire, I think that most of the family members who were posting were also 'caregivers', in the sense that we were performing the daily 'chores' needed to keep our family members whole and healthy.

    I do think that we have many members who are not 'caregivers' per se, in the sense that they do not provide physical care for their family member; on the other hand, there are just as many who do!

    And while even I, with a C4-5 son, don't perform as many of the day to day duties as I used to, as we now have an aide, I'm still the fallback, when she's ill, or as the 'shift superviser' when a question arises, or in coordinating the many appointments and med refills, etc. my son needs. So I do consider myself a caregiver still.

    Perhaps the answer lies in the compromise of changing the name of the forum to 'Family Members/Caregivers'?

    _____________
    Tough times don't last - tough people do.

  4. #4
    Senior Member KDK513's Avatar
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    Thought I would check in before calling it a day...funny how we were on the same wavelength, Marmalady. It is almost unreal to look back on my life just 2 years ago; 3 years ago, even more amazing. It was impossible to see myself back at work and my spouse independent. I still view myself as a caregiver.

  5. #5
    Senior Member
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    I am new here so my HO may not be relevant to the community. I am a caregiver in the full sense of the word and have been for 27 years. It isn't a big deal just a part of what you do for those you love. Over the years I have looked for a caregiver forum that addresses some of the changes that I have gone through over the years. While life is good in the truest sense of the word I have had those moments when I wish I could talk to someone about the two distinct roles of "caregiving", being there 24/7 on the "job" so to speak and the role of being a wife. Sometimes it seems the two get tangled up and it is difficult to tease out the difference. I am glad I found a caregiver place--but perhaps my "in the box thinking" kept me typing in that word "caregiver" !!!

  6. #6
    Senior Member KDK513's Avatar
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    Just doesn't pay to talk about how much better everything is... 30 minutes after my last post we were headed to the ER. He was impacted and best efforts had no results, blood pressure headed up and off we went. He was admitted for a day which was a real disappointment, first hospitalization in 3 and 1/2 years.

  7. #7
    Senior Member kate's Avatar
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    That sucks, Kathy. I know the very thought of him spending a night in the hospital makes my skin crawl . . . is he back home now? Everything OK?

  8. #8
    Senior Member KDK513's Avatar
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    Thanks Kate, yes, he's home. It was difficult to see him in so much pain. Dealt with the usual inefficiancies, you know... no room in the inn so stayed in ER for 16 hours, before getting a lousy semi-private room. Then we dealt with accessibility issues and major delays in treatment. I hate to start out as a total bitch, but after all this I'd had it. You know, I get very frightened wondering about our future, with nursing shortages... and we did not actually see a Doctor during his remaining 15 hours in hospital, sigh.

    My new stress comes from paying bills just now. Someone charged $9800 worth of stuff in Great Britain on my husbands Visa. I have no idea how they stole his number, cause his card is right here. Hope it does not become a huge issue.

    I have my fingers crossed that his good health returns, as we have planned a one week cruise for the two us and our children, first vacation with all of us in over 4 years. Gotta get better!

  9. #9
    Senior Member kate's Avatar
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    Gads. Somebody's trying to ROB you, on top of everything else?! Doesn't it seem like there should be a sort of cosmic moratorium on every other kind of bad luck?

    Maybe the forum can still be called "Caregivers"--but it should have a subtitle, like "We're survivors, too dammit!"

  10. #10
    Whatever the handle may be you all are under.
    Well..I feel you are the heart and soul of this community.

    Your love is so deep. And your dedication is worthy of congressional medals.

    Faye, Marmalady, all of you too many to mention have my utmost respect and admiration.
    And I am sure the loved ones you are caring for must feel the same way.
    You are loved.

    If you can dream it..you can
    do it. Walt Disney

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