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just readbook on caregiving called dirty details

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    #16
    Originally posted by MSWIFE1 View Post
    Caregiving is hard, no one ever asks for it, but I didn't marry David because he could walk or wipe his own butt. I married him because I loved him and I still love him even though there is so much he can't do. Yea I get stressed because ok like right now, I have $100 in my checking account, payday is not until next Wednesday, the washing machine is leaking, the roof is leaking, the air is not working in my jeep, just got the air fixed in the van, I need to mow the grass but am out of gas, plus its too freaking hot outside to think about mowing, I am tired, still gotta fix supper, on and on and on. Prior to this MS crap, David would fix the washing machine somehow with little or not cost, he would climb on the roof and put some tar on there to fix it (I have done this twice but can't seem to make it right) he would mow, in otherwords he would do alot of these things himself and take the burden off of me, but where is he? He's tilted back in his power chair taking a nap which he has been doing for about 3 hours now. Sorry to get this thread off topic a bit...as you can tell I am having one of those sucky days. Too much shit to do, not enough time money or knowledge. I think I need a drink
    I'd offer you a beer, but it is so darn hot I might just make us each a big vodka and fresca. (my sister made it at the lake and very refreshing)
    Things pretty much the same here-tilting back and napping.
    I would not have done everything the same way the author of the book did, but she made some very valid points. I could relate to much of what she said. That being said I will stress I am not complaining one bit. But sometimes there is only so much of me to go around. I finally did let MIL in on a bunch of "dirty details" because she was pretty much in denial of things.
    I have no doubt it will offend some people and may regret even bringing it up! My question was has anyone read it and what did they think.

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      #17
      Originally posted by LindaT View Post
      by marion deutsche cohen.
      Has anyone else read it? Please PM me your opinion if too personal.
      I was nodding my head to much of it-sadly.

      I've finished it now. Even though her situation is not the same as mine, it hit too close to home. It was a therapeutic and at the same time uncomfortable read for me. It brought up a lot of feelings that I can't even begin to or want to discuss---it's too much these days to DO and talk about the doing too. It's all I can do, to do. It's just too much to do. It isn't the tasks in and of themselves, one is no different from the other to me. It's the volume of them and the fact that they are always there and are a simultaneous part of everything I do, even unrelated things. Always tired. Always trying to smile despite it all. Failing miserably. Can't even fool myself anymore. It was not the SCI that got me. He had that when I met him. It was the TBI in 2006 that did me in. Until then, I was a wife and did not consider myself a "caregiver" even though I did "caregiving" things often. Over time, after the TBI reality set it, I realized I was more caregiver than wife and that tore my heart to shreds and does daily. Oh, this book brought out all kinds of demons for me.

      The book made my denial harder to believe in, so I doubt I will ever read it again. I like living in denial. It keeps me from jumping off the roof. However, it was comforting to know that someone totally got it and without guilt, at least not guilt for her own feelings---for HAVING feelings-- totally got how I feel, what I've become, what I used to be, what I hurt for...... Had all the same feelings I feel guilty at times for feeling and didn't apologize for feeling them. Heartbreaking though that she had to get it the only way a person ever DOES 'get this'.

      I wouldn't even know where to start to discuss this book in the state my head is in these days, as there were too many times I was going "oh yeah" or "exactly" or feeling empathy or having an "ah-ha" moment. I could not discuss it intelligently, if I tried, my head would break in half. Maybe a few years ago I could have....not now. Thank you for bringing it to my attention. I am glad that I read it.

      This turned into rant. I'm done now.
      "I just want you to know, it was the best time ever." J.F.F.

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        #18
        Originally posted by WM View Post
        . . . it was comforting to know that someone totally got it and without guilt, at least not guilt for her own feelings---
        Thanks for that. None of us can help feeling that guilt, but it's worth a lot to know we really don't have to. It can't be said often enough, or loudly enough.

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          #19
          Wow, you post has me scared to read it now. I understand everything you said and that scares me. I like smiling like nothing is wrong, even if I know everything is wrong. I want to continue to love my husband as my husband not his caregiver. I wll stop now before my post turns into a rant.

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            #20
            Hi WM, Thanks for your opinion. I felt pretty much like you did. It's a tough read and opened some feelings in me I had kept buried. I think when the book came out she was misunderstood-which may have been easy to do with her style of writing.
            I get very frustrated with Dave's family and could relate to her "tantrums." I don't have small kids around the house though.

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              #21
              Originally posted by LindaT View Post
              Hi WM, Thanks for your opinion. I felt pretty much like you did. It's a tough read and opened some feelings in me I had kept buried. ... I get very frustrated with Dave's family and could relate to her "tantrums." I don't have small kids around the house though.
              If I opened that door I wouldn't be able to get it closed, just reading these posts and the posted exerpts make me feel like bawling. I think I'm too raw too close to the surface. I wish I could have a tantrum and rant and scream and yell at his family for being so...you all know.
              "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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                #22
                I refuse to waste my energy ranting and screaming at Davids family, as far as I am concerned they aren't worth my air.

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                  #23
                  I'm working on the energy thing Life is full of transitions, there just seem to be a lot in our life right now .
                  "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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                    #24
                    Originally posted by MSWIFE1 View Post
                    I refuse to waste my energy ranting and screaming at Davids family, as far as I am concerned they aren't worth my air.
                    In-laws are evil without the added stress of SCI. Holy shit!

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                      #25
                      No kidding thank god I only have a mother in law and its MS not SCI

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                        #26
                        Originally posted by MSWIFE1 View Post
                        No kidding thank god I only have a mother in law and its MS not SCI
                        OMG! I feel like an idiot. I thought you were a Mississippi wife (just noticing the Location details, but you could have moved in my defense LOL!). LMAO! Your husband was dealt a bad hand there, but has an amazing wife at his side, truly.

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                          #27
                          LOL. Your funny.

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                            #28
                            My MIL coming Wed and her pet bachelor son will be there too. We are haing a 75th b-day party for my mom. Pet son and Dave used to be close, even having a little business on the side installing furnaces and A/C and did stuff all the time. He is the only relative that lives in our town and is usually to "busy" to visit and has never taken Dave anywhere in the van.
                            When MIL was here a few weeks ago she chided me and told me that Dave's accident affects us all the same. Good, she can cancel her 3 week trip to Europe and come hang out with me every day. Grrr. she can try to keep meds and the many supplies straight, get up at night to suction, deal with occasional messes, try to find someone to go to the store etc etc. I am gritting my teeth at them coming.
                            Wow-a vent, I could go on for days.
                            By the way, I am not complaining, it is just tough some days and to say it affects us all the same is BS. All I said was when we were getting ready to go to the lake is that I miss the days when we could just go alone. Sigh. Thank God for my loving dysfuctional family and kids.

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                              #29
                              Linda wanted to let you know my copy of Dirty Details came in the mail today, as soon as I read it I will let you know. I don't want to start it tonight because its a small book and I know if I start I won't be able to put it down. --- Lisa

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                                #30
                                Originally posted by MSWIFE1 View Post
                                I like smiling like nothing is wrong, even if I know everything is wrong. I want to continue to love my husband as my husband not his caregiver.
                                MSWIFE1, I could just kiss you.
                                MS with cervical and thoracic cord lesions

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