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Thread: Kate's On Line Journal

  1. #201
    Senior Member martha's Avatar
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    Kathy, you hit it ALL on the head. He spends a lot of time in the recliner and of course it's easier for me to fetch and tote than for him to transfer a million times. Amazing how if I say something about it, he suddenly either has bad burning in his legs or his arthritis becomes unbearable. And, yep, I've often had the same feelings about if this had happened to me instead of him. I have asked repeatedly that he not cath in the living room in the recliner, but all I got was a change from a giant waste basket that stayed by the chair all the time to a small waste basket that he empties every day or so. How lovely. You can't imagine what it took to convince him that I wasn't going to empty those waste baskets any more. Oops, gotta run, massah is calling.

  2. #202
    Senior Member krajaxa's Avatar
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    Stacey,
    I got the harness from Arthuro (a memeber here), he was giving two of them up and I was lucky to get one. If you are good with sawing machine you could fabricate one... or try to look for something similar (climbing harness might work).

    You, girls, sound like we are running paralel lives. I hate when hubby lays down and two minutes later asks what he could have for snac. Only three minutes prior that he WAS in the kitchen!!! I'm ready to kill that minute!!! But I guess I spoiled him to some extent. Well, when the baby comes... he is definetely going to be on his own, for now I try to get him into practicing here and there... At least we don't have the recliner (yet?), but there is always an excuse to eat by the computer ("Hey hon, I can fit under the desk!") By the way, he sold my old dining room table and chairs at the yard sale last fall, and whatever I find is not good. Well, I'm ready to do some serious shopping soon an I AM bringing one home!

    KDK, I think you have a good idea w/the book. Some of the funny stories could spice up the downfalls of living w/SCI.

    Just hang in there, all. Maybe we can steal an hour or two this weekend for ourselves...

    k

  3. #203
    Kate and Family,
    Just a note to let you know that I am thinking of you as you head down the slopes today.

    Hope the 15 inches of snow didn't slow you down.

    "Don't worry about the world coming to an end today.
    It's already tomorrow in Australia!"----- Charles Schultz


  4. #204
    Senior Member dogger's Avatar
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    Stacey , in this thread there is a post from Debbie7 about a harness ,http://carecure.org/forum/showpost.php?p=307216.

    ladies have you thought of setting hubby up in a little self contained area ? in my last house i had a little alcove with the kitchen on one side [ which had a wood stove in it] and a verandah [ when the weather is right i prefer to be outside ] with a glass sliding for access on the other side . in this alcove i had a couch , tv , beer fridge and a cupboard for snacks , books etc. i made up a tray about 18'' wide as long as the arm on the sofa that fitted over the arm of the sofa .this tray had a flat top [ for snacks or writing on ]with holders on its edges for essential items like beer and not so essential items like cordless phone , tv remote some pens etc. in summer i would sit on the verandah [ could watch tv through the glass door , in winter i could close the rest of the house off from this area and the kitchen and let the woodstove do its job . i don't really have an area like that in this house [ it is in some mental building plans for the future ]. you may not be able to go to this extent but maybe a bar fridge beside his couch that cool drinks and some snacks could be kept in , and the flat top could be used as a small table for cordless phone , a couple of books and other ''wants'' he may need .

    thank you
    dogger

    every day i wake up is a good one .

  5. #205
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    It is so nice to have people who understand what you are going through. When I was reading the last posts, it sounds just like my life! I also wonder what it would have been if the roles were reversed. Joe also, would have went off to work andI would have had to be much more independent than he is. I suppose part of that is my fault. I spoiled him. But, man am I paying for it now. He calls me constantly. I can't remember the last time I was able to cook dinner without burning it because he had me running back and forth so much!
    Sorry we all have to go through this but I sure am glad not to be alone.
    Thanks, STacey

  6. #206
    Senior Member KDK513's Avatar
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    Ok, let's make a pact to end an era of enabling. We do it, I think, out of a mixture of love and guilt and clearly this is not good for anyone. We know it, but don't know how to stop. This is the beginning of Caregivers Anonymous and we are going to come up with our very own 10 step plan. I don't know what that plan is, exactly, cause I really don't know how to stop, but I know we can help each other. Think about it.

    I remember during the brief stay my husband had in rehab the goal was supposed to be to send him home to function completely independently. I heard it over and over again, what a pathetic little joke they had on me. The idea was to send him home as soon as our insurance company said so, ready or not. There was no way he could care for himself and so we have learned this little routine. I have become his beck and call girl and it is hard not to be resentful; especially, when you feel you are doing it all while they watch TV. Darn, I had vowed never to let this demon out. I thought I had buried it but good, trying so hard to stay positive. Chalk it up to this relentless winter. There are times I am quite proud of my husband, but it is these little things that can send me over the edge. 10 steps anyone? 5 steps? Begin with 1? I'm drawing a blank.

  7. #207
    Senior Member KDK513's Avatar
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    Stacy, guess what happens to hard boiled eggs when the pot boils dry.

  8. #208
    Senior Member KDK513's Avatar
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    Dogger, great suggestions, but in our case I still think it has become learned behavior. Our new home is accessible in every way and still this pattern persists.

  9. #209
    Senior Member KDK513's Avatar
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    posted 2x

  10. #210
    Senior Member kate's Avatar
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    Oh, my friends!

    I have lots to say about the recent run of posts, but will save it for when we can be together and actually talk. I think Caregivers Anonymous is LONG overdue, and I think the notion of a book pretending to be a selection of entries from a journal like this one is a GREAT, FABULOUS, SUPER idea.

    There used to be a kind of letter shared among family members called a "Round Robin"--does that ring a bell with anyone? It was like, one sister would mail a letter to another, who would add a few paragraphs and send it on to the next, and so on, until it came back to the original sender, with comments on what had come before and news of what came after. What we have going here is essentially the same thing . . . a running conversation, only we can do it in real time. I'd love to see a thing like that in print. Another subject for our gathering.


    Thanks for thinking of us on the mountain today! The drive to the pass was,uh, interesting . . . a line of semis a mile long stopped to chain up, Bruce and I and the girls and one of the cousins in our van, his brothers and dad and another cousin in a truck. We got on the snow, finally, at about 12:30 in a serious downfall--very unusual late storm. The roads were so bad that there were only a few people up there, which was fine with us. So, Bruce's brother is, like, this astounding person--and he took charge of helping set up the monoski and pushing it when it had to be pushed, and helping load and unload onto the lift, and sticking with Bruce for hours and hours, picking him up when he crashed, calling instructions, making jokes, and finding time to throw snowballs at the girls when they started looking bored. I'd fall for this guy in a big way if I wasn't already so crazy about his brother!

    I was sad, though, a lot of the time. My husband used to ski like he was dancing. He used to be the most graceful, elegant, liquid presence on the snow. He used to make it look so easy, I thought even I could do it. Today, he made some good turns on an easy run, and it seemed like a miracle. He also fell over a lot, and--oh, God. When he falls, he's stuck, can't move until someone comes over and picks him up again. I could NOT watch this, could NOT stand to see him immobile and helpless with his face in the snow. Our daughter, who is now 12, went with her other uncle up to the run they were doing when he had his accident. A brave and resourceful girl, but I could see that she was also sad.

    He's getting dressed now. We're going to dinner with all these people. I sent them away so they wouldn't have to wait for us. Then we're going to the pool, where the kids will have fun and I might get a minute or two in the sauna. Sigh. Two years ago at this very hour, I'd just been told that my husband would never walk again.

    Oh, my friends.

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