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You know what I hate about caregiving resources?

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    You know what I hate about caregiving resources?

    They are 90% aimed at people caring for older people, usually people with dementia of some sort. It may be aimed at adult children, spouses or parents, but always elderly or otherwise dying. Places like wellspouse.com and thefamilycaregiver.com etc etc. Its not that I think they are bad sites, its just that the vast majority of the materials and members are aimed at / interested in elderly caregiving.

    MY HUSBAND IS NOT DYING. I don't plan for him to die for a VERY long time. And he's 42, not 82. And no, having an afternoon off isn't going to help me one bit. Not that anyone in a "community resource" setting would - his care is too "specialized" they say.

    Anyway, I just wanted to vent about that. You are now being returned to your regular programming.

    p.s. please don't skewer me for this rant .... i know that these caregiving websites and groups DO have some useful things for people like me. Just not very many. I just had to get that off my chest.

    p.p.s. double triple pretty please don't skewer me .... (i'm paranoid!!)
    Last edited by zillazangel; 25 Jan 2011, 5:51 PM.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

    #2
    Zillazangel, I doubt anyone would even think of skewering you for the rant! The advice to take an afternoon off is stock counsel because there's so little else anyone can say or do nowadays, regardless of whether caregiving is short- or long-term...funding is shrinking fast, trained aides are few and far between, personal pocketbooks are strained beyond belief. We live in truly parlous times, and my hat is off to everyone here for doing the best they can in each moment.
    MS with cervical and thoracic cord lesions

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      #3
      I've come to the conclusion that the home health agencies want is to help old ladies to the commode and cut their toast.

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        #4
        OMG, YES, exactly!!!

        What I need is two fold: someone who can do what chad *would* do if he weren't disabled, and someone to help me take care of him.

        Point 1: someone to mop the floors, make dinner, mow the lawn, trim the hedges, take out the trash, take the car for an oil change, walk the dog, run to the store, KILL LARGE BUGS, change lightbulbs up on a ladder, fix the leak in the toilet, fix the garage door that croaked, take himself to his appointments, etc etc.

        Point 2: haul chad's butt into the shower, wash him, shave him, give him a haircut, clean up the bathroom once done, change the sheets, wash them, fold them, put them away, put new mattress pad and sheets on, brush his teeth, put on a new cath bag (oh, and change the sp cath while you're at it will ya?), wash out the old bag with water, then bleach, then water, do bowel care, put on his pants, socks shoes, get him in the chair, put on his shirt, deodorant, brush his hair, put in eyedrops, scratch his head, position him in the chair, fill up the water bottle, make him lunch, feed him lunch, give him his medications, set up the computer for him, give him his mouthstick, ....

        Oh wait, they just want to sit and "visit". For $40/hour (out of our pocket 100%). I don't think so! And for $10/hour we still can't afford, we usually get lazy no good steal from us and show up late / drunk / high attendants.

        Anyway, yeah. What you said!
        Last edited by zillazangel; 25 Jan 2011, 8:40 PM.
        Wife of Chad (C4/5 since 1988), mom of a great teenager

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          #5
          Linda, rueful LOL!

          Another thing I wonder about, is whether plain old denial has something to do with this. People might want to distance themselves from the knowledge that the need for intense caregiving could actually happen in their lives, as well as those of faceless others. I see this all the time in the reactions of former friends, who can't bear to face the possibility that they might not be playing tennis in 5 years' (or even 5 minutes') time. Extending those local/individual reactions outward to society at large, maybe there's very little stomach (and therefore support) for reality in our society.
          MS with cervical and thoracic cord lesions

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            #6
            Do you have a teenager in your neighborhood? A teen would be over-joyed to make $10 an hour by doing the little things on your list. Just make a chore list that you think will take an hour, and ask the teen if they will accept the task on a regular basis. What I am saying is, don't pay the kid $10/hour, tell them you expect the chores to be completed in about an hour, and that is what you will pay. Otherwise, the teen will lollygag over the job.

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              #7
              Thank god! Finally someone who can complain louder and in better words than me. This is what I am talking about. Its absolutely absurd. If you find the answers please share.

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                #8
                zillazangel,
                I hope you get get some decent help with all this!
                I'm lucky I can do most of these things myself.
                But, I'm looking forward to the day when I sell my house- and live with less needing to be done.
                Rich

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                  #9
                  I see my husband go through the same problems you are having. My greatest wish is for him to be the first one asleep and the last one awake.

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                    #10
                    Originally posted by SoFla View Post
                    Do you have a teenager in your neighborhood? A teen would be over-joyed to make $10 an hour by doing the little things on your list. Just make a chore list that you think will take an hour, and ask the teen if they will accept the task on a regular basis. What I am saying is, don't pay the kid $10/hour, tell them you expect the chores to be completed in about an hour, and that is what you will pay. Otherwise, the teen will lollygag over the job.
                    Not to be rude, but you are SO 100% wrong about that. We have tried and tried and TRIED and no one wants this job. And the ones that take it? Doesn't matter if they are nursing students, college students, flippin' Mother Teresa .... after a few months they flake out and quit or worse. And when we do have an aide, we pay by the task, not the hour. Still doesn't help .... LindaT and MSWIfe knows that I speaks da truth!
                    Last edited by zillazangel; 25 Jan 2011, 8:42 PM.
                    Wife of Chad (C4/5 since 1988), mom of a great teenager

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                      #11
                      Originally posted by anban View Post
                      I see my husband go through the same problems you are having. My greatest wish is for him to be the first one asleep and the last one awake.
                      Chad is just like you, and then I feel SO guilty for complaining!!!!!
                      Wife of Chad (C4/5 since 1988), mom of a great teenager

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                        #12
                        Originally posted by SoFla View Post
                        Do you have a teenager in your neighborhood? A teen would be over-joyed to make $10 an hour by doing the little things on your list. Just make a chore list that you think will take an hour, and ask the teen if they will accept the task on a regular basis. What I am saying is, don't pay the kid $10/hour, tell them you expect the chores to be completed in about an hour, and that is what you will pay. Otherwise, the teen will lollygag over the job.
                        How long has it been since you hired a teenager?

                        Maybe the teenagers are breathing different air here in NC LOL (not trying to be a smartA$$ LOL) but I have been having trouble myself finding someone to do minimal things like Ami's list and people just don't want to work. PERIOD I asked my own kid to sweep and you would have thought I asked her to walk four miles in the snow to pick me up some diapers and bring them back LOL

                        Seriously...I just think its a sign of the times...

                        I am selling my house and if I can't take care of it myself....I don't need it. I don't really know and cringe at the thought of what other people who have significant needs are going to do.

                        I am so sorry Ami...I do understand your frustration. I feel bad for asking someone to change a lightbulb because I feel like I need a $100 dollar bill in my hand....
                        T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                        My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                          #13
                          Ironically, at the moment, we have a very good care arrangement where I do have reliable help. But as with the past, I'm kinda waiting for the other shoe to drop. And I was mostly just complaining about the lack of support for the position we are in - I am a young adult with a young adult husband, a young child, and the caregiving resources are generally really not applicable to us. Finding an adult day care center for chad? uuum, no lol
                          Wife of Chad (C4/5 since 1988), mom of a great teenager

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                            #14
                            Originally posted by zillazangel View Post
                            p.s. please don't skewer me for this rant .... i know that these caregiving websites and groups DO have some useful things for people like me. Just not very many. I just had to get that off my chest.

                            p.p.s. double triple pretty please don't skewer me .... (i'm paranoid!!)
                            Quit your bitching, Ami. I, too, laugh in the face of supposed help organizations out there. Help, my ass, they give more bullshit and hurdles over the dumbest shit, so I gave them the finger. I'm not a caregiver, so I really can't offer anything but an ear and some jokes to maybe lighten the load.

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                              #15
                              Originally posted by Le Type Fran├žais View Post
                              Quit your bitching, Ami. I, too, laugh in the face of supposed help organizations out there. Help, my ass, they give more bullshit and hurdles over the dumbest shit, so I gave them the finger. I'm not a caregiver, so I really can't offer anything but an ear and some jokes to maybe lighten the load.
                              I heart you Todd. A damn shame you're gay!!!
                              Wife of Chad (C4/5 since 1988), mom of a great teenager

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