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Thread: Totally exhausted and overwhelmed!!

  1. #11
    Ami

    Chad is a lucky man. I'm sure he knows that. What you do is impressive but listen to Jimmymack. Delegate......there's got to be more ways.

    I want to read a thread where you put your feet up with a glass of wine
    C5/6 incomplete

    "I assume you all have guns and crack....."

  2. #12
    Senior Member zillazangel's Avatar
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    ...

    OK, I am alot less frazzled now! THANK YOU ALL SO MUCH for your incredibly kind responses, and so quickly. It helped more than you can know ... but you probably do know. This place is great. I AM going to delegate more in my life - I can't really delegate my work due to the nature of it, but I *can* delegate my "life" so to speak. I am going to pay someone to just do the stuff I can't do. I'll take care of Chad as I'm not ready to delegate that, and this person won't live in, so I'm not concerned about my son. And Jadis, my god, those are the best suggestions I've ever heard!!!!!!!!!!!!! Food is the biggest problem for me, he is ALWAYS hungry, and so we are going to institute that ASAP.

    (((((((( thank you all for being here for me )))))) .. and not judging me as a terrible person. ** group hug from me **
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  3. #13
    Senior Member roshni's Avatar
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    Quote Originally Posted by zillazangel
    I AM going to delegate more in my life...
    You go girl!!!

  4. #14
    Senior Member Jadis's Avatar
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    Glad you can use them!! Another thing we did was buy a multipack of colored permanent markers. We lay out his new socks before they even go in the washing machine and put his initials on the socks. Each pair gets a color. Then he can mate them up himself by matching the colors. Started that when he was about 3 also. Funny thing is, he's 14 and still does it. Good thing since he has the same size socks as his dad

  5. #15
    I agree with getting the little guy involved in doing stuff for you. He could be your "little assistant". Have you considered looking into getting a voice controled environmental control unit, so that he can turn his tv on and off, change channels, and control fans, lights, windows, etc. Some of the state universities have departments of "rehabilition engineering", where they will design and set up programs and systems free of charge. I am getting one from a university here that is controlled by my computer. Since I have hand use, I will key it in, but they now have voice controls for computers.

    I also agree, you will probably want to find a PCA for a few hours a day. Start off with a few hours to be sure that it is a fit for you and your hubby. Then when you find you can trust them and there is a matching in personalities, you might increase their hours. I know about this as I have been burned many times by bad PCA's. Now I have a good set up and boy does it make a big difference!

    Have you talked with his urologest about maybe switching him to a foley, so that things will be a little easier for you, and him. I cannot say this will work for him, but I have a foley and it works out great for me.

    Does he have any buddies he likes to hang with? Maybe, have a couple of these guys come over and visit so that you and he has a break from each other. The company might be good for him.

    Hope all goes well for you and these are just ideas for you.

  6. #16
    Senior Member NWC4's Avatar
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    It sounds to me like Chad needs to work on ways of being a little more independent. Whether it's voice controlled ECU, phone, bookholder, or computer there's plenty of adaptive equipment out there. I'm C3/4 and live alone with help in the mornings and evenings. My 90 year old neighbor gives me a hand during the day if I'm hungry or need something moved which can't be moved by mouthstick.

    I don't know whether he has special needs above and beyond the average C3/4 quad, but if not, then there's no reason he can't do his on thing for 3 or 4 hours with minimal assistance during the day.

    Blessings to you.

  7. #17
    Senior Member zillazangel's Avatar
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    Actually, no, he can't. He is 100% paralyzed from the shoulders down with no movement and sensation below the shoulders. He does have an ECU, but it doesn't scratch his head, and it doesn't control the Tivo function of the television (which 99% of what we/he watch). A bookholder is useless as I have to turn every page. He uses a computer extensively .... when I have the energy to spend 1 hour and 45 minutes getting him out of bed, into the shower chair, showered, shaved, teeth brushed, lotioned, back to bed, dressed, into wheelchair, fed and move all the toys on the floor .... and without help in the AMs and PM, it is just overwhelming for me. You know? He can't help that .... and he does "do his thing" for a few hours every day, but then there are those other 21 hours .... *shrug*, it's just life for us. And I'm going to try hard to help make it easier on myself. thanks,

    Ami

    Quote Originally Posted by NWC4
    It sounds to me like Chad needs to work on ways of being a little more independent. Whether it's voice controlled ECU, phone, bookholder, or computer there's plenty of adaptive equipment out there. I'm C3/4 and live alone with help in the mornings and evenings. My 90 year old neighbor gives me a hand during the day if I'm hungry or need something moved which can't be moved by mouthstick.

    I don't know whether he has special needs above and beyond the average C3/4 quad, but if not, then there's no reason he can't do his on thing for 3 or 4 hours with minimal assistance during the day.

    Blessings to you.
    Last edited by zillazangel; 01-29-2006 at 09:43 PM.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  8. #18
    Zillazangel,
    hope your doing ok and that you do take care of yourself and your foot. You warm me a little with your post. It looks like I found my match. I'm such a control freak, I also have a hard time to let go of the little things and ask for some help. It has just been so many times when I've asked someone for help and then got some, but not in the way I likes it so I had to redo everything... Or just that plain thought of having strangers around my children and letting them grow up thinking its normal to have a million people around doing everything "for you". I care for my two little brats 2 and 4 all day and night plus my hubbt C6 complete, now my husband CAN do a lot of things, but just don't care, so in the end it all falls on me.

    You are an amazing person and you do love your hubby, otherwise you would have never married him. Just make sure you rest so your foot can heal, your feet are needed.

  9. #19
    Remeber, if you do not take some time for yourself, you will put so much pressure on yourself that you will break. You know the song with the line, "Unbreakable steal breaks". You have to accept that you need to find time for yourself, and PCA's are a necessity. Try one for a few hours a day until you find the right one, then expand the hours as needed. You need to have a set up and order to things that are such that a PCA chore list can be easily followed. Then if you had his "set up" for his computer, mouthsticks, etc. set up all the time so he can just wheel in there, and you do not have to set up each time that would make it easier.

    Is the itching on his head due to something that a dandruff shampoo would reduce. I found that to be the case with me. Then you would not have to worry about "scatching his head" as much.

    I am just worried, and I try to be sure that my PCA's and caregivers get a break from me. As a person with a disability, I know there is alot of work in caregiving, and he is probably aware of it too.

    Good luck, as there are few people who care for someone with such love as you.

  10. #20
    Senior Member NWC4's Avatar
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    Quote Originally Posted by zillazangel
    Actually, no, he can't. He is 100% paralyzed from the shoulders down with no movement and sensation below the shoulders. He does have an ECU, but it doesn't scratch his head, and it doesn't control the Tivo function of the television (which 99% of what we/he watch). A bookholder is useless as I have to turn every page. He uses a computer extensively ....

    Ami
    Actually, yes he can! If he cares to be as independent as possible. I have been a C3-4 "100% paralyzed from the shoulders down with no movement and sensation below the shoulders." for nearly 25 years in which I've worked a regular 8 hour job for the last 22+ years. I've been blessed to be able to telecommute for the last 6-7 years. I have lived on my own with 3 hours of live-out care each morning and evening for the last 15 years.

    Unless he's on a vent and needs regular suction or has another vital need, he can be, if he cares to and you help him with a workable setup.

    As far as turning pages, is he unable to to use mouthstick? I use a mouthstick for everything for typing to turning on and lights, heater, tv, turning pages, moving items on my desk, opening doors, etc. etc.

    Oh, and the itchy head? I have had hives for the last month and a half for which I haven't found the cause. Trust me, I know itching. He may find some relief with Benedryl.

    If there's the will, there's most likely a way. Don't tell me it can't be done, I've done it. But then that up to you two.

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