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Thread: Wife is caregiver

  1. #1

    Wife is caregiver

    I am writing this to ask how many people are SCI that have their wife is caregiver or their husband. I am a C4 with only limited use of my right arm, the only thing I can do with it is drive my chair and use the trackball when I am in bed . The problem, I am having with my wife be in my caregiver is the level of care that I feel that I deserve. For instance, how many meals a day does a high level quadriplegic with two pressure sores need to be healthy? I do have a PCA, which has been working for me for 14 years and is my best friend, I wish I had three more guys just like him that comes in every morning and does my showers three times a week, no complaints, always on time does everything I need. When it's just a wife taking care of me in the morning around 8- 9 o'clock, I get a granola bar or some kind of snack like that and a boost drink, and I get dinner around 5-6 in the afternoon. When my PCA gets me up at 7:30 a.m., I have breakfast and I get dinner in the evening, the only thing I get during the day is whatever snacks I can set out on a plate that I can get you on the kitchen island, which I don't mind doing that because of something I can do on my own. I am still paranoid about having to go through another flap surgery on my sacrum that I went through in May 06. I have tried to talk to her on many occasions about these problems, and she gets mad at me about how I need to quit reminding her. We have been together for 14 years, we just got married in January, and I am having real bad feelings about this to the point of sending her on her way. I feel like I'm at a real bad time and I need some help from you people here CareCure.

    Help me CareCure, you're my only hope

  2. #2
    Senior Member
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    I'm a T7-8 so don;t have these issues, so maybe I shouldn't be butting in, but the meal thing struck me.

    Is there a way you could have someone come in at noon to help you with lunch? Maybe someone from a church or other volunteer organization? High school kids often need service hours for various reasons, and could perhaps stop in after school? I know they have meals-on-wheels for elderly people who cannot cook for themselves, but that wouldn;t address the feeding help I assume you need. Just throwing out ideas here.

    I would think a midday meal would be important, especially if your breakfast is "snacky". (On the other hand, I am independent as far as meals go ..... and only eat dinner and a snacky breakfast myself ... a combination of laziness and lack of appetite. But I probably shouldn't.)
    T7-8 since Feb 2005

  3. #3
    If you have pressure ulcers, you need to eat food that is high in calories as well as protein. From what you describe, I find it hard to believe you are getting enough of either, must less vitamins and minerals you need to heal and stay healed.

    If your wife is not providing you the food you need, in spite of your asking her, and gives you so much grief over helping you, I am puzzled about why you got married only this year?

    In most states, a spouse is held to some legal responsibility for providing food, clothing and shelter to a "dependent" adult. Failure to do so can be considered abuse or neglect. You may have to report her (or have some one else report her) to Adult Protective Services. They will assign a social worker, do an investigation, and intervene as needed. Be careful though, as they may want to suggest you go to a nursing home instead.

    Can you get more attendant hours? Leave your wife out of the caregiving role all together?

    What are you getting out of this marriage? It doesn't sound like much. I find it interesting that you never once mentioned love or affection between the two of you. If she won't go for some counseling, I would suggest you get some on your own.

    (KLD)

  4. #4
    Senior Member
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    Hi There!

    I am the caregiver for my hubby who is a T11 complete. So the level of care is not would it would be for a C4. Don eats a "snacky" breakfast, a lunch and a dinner. He is able to do these things for himself but I usually do dinner. You deserve a level of care that you feel comfortable with. If she is not doing this and won't talk about it, then maybe counseling would help for her.... it is easy to get burned out... I'm sure you will hear from other spouses here. It's too bad that your PCA can't come by and help out more... maybe if you arranged a meeting with your wife, you and your PCA to talk about the care?

    My thoughts are with you,

    Sieg

  5. #5
    Quote Originally Posted by crppled007
    I am writing this to ask how many people are SCI that have their wife is caregiver or their husband. I am a C4 with only limited use of my right arm, the only thing I can do with it is drive my chair and use the trackball when I am in bed . The problem, I am having with my wife be in my caregiver is the level of care that I feel that I deserve. For instance, how many meals a day does a high level quadriplegic with two pressure sores need to be healthy? I do have a PCA, which has been working for me for 14 years and is my best friend, I wish I had three more guys just like him that comes in every morning and does my showers three times a week, no complaints, always on time does everything I need. When it's just a wife taking care of me in the morning around 8- 9 o'clock, I get a granola bar or some kind of snack like that and a boost drink, and I get dinner around 5-6 in the afternoon. When my PCA gets me up at 7:30 a.m., I have breakfast and I get dinner in the evening, the only thing I get during the day is whatever snacks I can set out on a plate that I can get you on the kitchen island, which I don't mind doing that because of something I can do on my own. I am still paranoid about having to go through another flap surgery on my sacrum that I went through in May 06. I have tried to talk to her on many occasions about these problems, and she gets mad at me about how I need to quit reminding her. We have been together for 14 years, we just got married in January, and I am having real bad feelings about this to the point of sending her on her way. I feel like I'm at a real bad time and I need some help from you people here CareCure.

    Help me CareCure, you're my only hope
    Did things change after you got married or have for the past 14 years been the same?
    Before marriage did you have a PCA everyday?
    What about your PCA when available cooking meals that you could warm in microwave

  6. #6
    Senior Member Kenny L's Avatar
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    well atleast i don't feel alone in my situation now. wish you best of luck, contact me if you want to talkabout things.
    Kenny L.

  7. #7
    Just because I'd did not mention love or affection in my first post doesn't mean that it's not there. We have a long talk a couple months ago, and we did decide to get some counseling, and we did start to go. We've been taking care of my cousin who's 12 years on turning 13 in August and has special needs (learning level 2- 3 grade, mentally. Nine-year-old). We have been taking care of him for 18 months, because his dad is highly prone to violence, drugs, etc. has had CPS called seven times, has a partial head injury himself, you get the picture. We have been going through court for the past eight months. Just trying to keep him with us. So he doesn't get put in foster care. There's a whole lot other BS, which that's a whole other story. Our last court case gave us another six months without having to go back, so this next six months is going to the working on us. I do know that I need therapy for myself. Not just for this, but for things I didn't take care of when I first got hurt and that when I was in rehab last year for four months, I started taking care of those and that did really start helping.


    The part about getting somebody else to help come in is that we have been burned so many times. But other people. We don't know who to trust, we have very bad trust issues with other people. For example, I have had my best friend Daryl that I grew up with since I was about the age of 10 he has lived with us before, he knows how to care for me, he has been my caregiver before, about two weeks ago him and his wife were needing to get a new vehicle. And they were short about $250 to get the insurance. They came to me explain their situation, since I have a big house (two acre lot, two-story). I always have something to do, which we have worked at things in trade before, this was on June 4, June 5 was my birthday Daryl and I went out to eat, which I paid for, because I knew he was broke. No big deal. You feed me my meal I pay for yours, June 6 10 hours in court about my cousin Peyton deciding where he was going to stay (his grandma, which could have sealed the case, didn't show up because she is terrified of her son-Peyton's father). June 7, Daryl didn't show up talked to him that night, swore he would be there 730- 8:00 a.m. no-show. No call, still nothing after two weeks.
    So needless to say I have been under little bit of stress.
    I think counseling is the best route to go, because she is severely burnt out, and I just want to get her that helps that she needs. Along with the help that I need that would benefit us both. At a point where we both can feel comfortable.
    I think maybe I need to go and shoot a couple boxes of shells in my gun, don't worry I have it in my parents cabin.

  8. #8
    Senior Member zillazangel's Avatar
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    Oh gosh, where to start.

    It's funny because I relate to your wife's feelings - at least some of them. At the risk of getting ripped a new one, I swear, sometimes it feels like all I do is feed people. Here is a typical day (abridged):

    Wake up at 6 am to cath Chad. Back to sleep (hopefully) Wake up at 7:30 am, feed my son breakfast, feed the dog, go to school, get back at 9:15 am. Feed Chad who is hungry. Now its 10 am if I'm lucky. Sit down, relax with a cup of coffee and eat breakfast myself. A few minutes later, cath Chad. 11:15. Start working. Feed the dog at noon cause he's whining. Chad is hungry around 1 pm. Make something, feed him. He eats realllllllllllllllllly slowly, its a huge pet peeve of mine. I eat lunch later, so I go back to work for an hour or so. Rats, I need to eat lunch and I need to grocery shop. Run to store, start food prep for dinner. Get small boy from school, give him a snack. Make dinner, feed everyone, including dog and me again. Bedtime for small boy, come down at 11 pm after I fall asleep accidentally with him, and Chad wants a snack. Cath him, give him a snack. Collapse, repeat tomorrow. And the day after that, and the day after that, and the day after that.

    As awful as it sounds, feeding him is probably the biggest, or shall I say, one of the most difficult things when I'm his 24/7 caregiver. (we have no PCA right now, working on that again ...). It sure is easy to revert to snacky easy stuff, easy for me, but not so good for him nutritionally or tasty.

    Some things I've tried and am going to try to do more now that we don't have a PCA. I am going to make stand alone meals for a few days and then just put them in the fridge to microwave or take out. E.g. tonight I am going to make a number of various sandwiches, bag up small portions of chips, cut up a bunch of fruit and put in small individual size bags, make pasta with sauce and divide into portions to heat up quickly, etc. My goal is to make 10 meals - even if it's something as simple as putting a pre made oatmeal pack on the counter so that I don't have to stand there staring at an overfull, but seemingly empty, pantry when he's hungry. I'm going to put a list on the fridge with his meals and then just make them one by one. I'll still make dinner each night, but lunch and breakfast will be from this.

    Maybe your wife could do that? This approach helped me TONS with my son. Jadis, from here, suggested this to me a long time ago, probably 2 years ago, and it has made my life sooooooooo much better. I fill up a regular drawer with unrefrigerated things - bags of graham crackers, peanuts, apple sauce with spoons (all in a ziploc so they don't get separated), etc. Then I have two drawers in the fridge - one for boy snacks: cartons of yogurt and spoons, cheese cubes in snack bags, cut up fruit, carrots (his favorite believe it or not), etc. It varies by week depending on whats fresh, good and importantly ON SALE! at the store. The other drawer is the boy drink drawer. It has little bottled waters, juice boxes, and cartons of milk. Anytime at all he is hungry, he can just eat anything from any of those drawers without asking. Sometimes I get him to eat breakfast from the drawers on the weekends so I can sleep at bit. He eats cereal every morning on school days, so I have to get up for that otherwise I'll have a 1/2 gallon of milk on my floor!

    There are alot of issues in your relationship it sounds like, and counseling is highly advised, and it sounds like you are going to invest the time to do that for yourself and I hope she does to (individually) and also as a couple. This SCI stuff is highly stressful and its really hard for all of us.

    But no matter what, you deserve to be fed. No matter my irritation, I would never, ever let Chad go hungry.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  9. #9
    Senior Member michaelm's Avatar
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    Zilla,
    When the hell do you sit and relax? And what is Chad doing all day? Your going to collapse girl.

  10. #10
    Senior Member zillazangel's Avatar
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    I don't. Seriously. Well, there are a few patches here and there when I get time to rest up. Namely, I have an incredible best friend whose daughter is my son's best friend and she does so much for me with the kids. We joke that we share custody of the kids - they spend every other Saturday night here and the other one at their place for a sleep over. And at this age (age 6), a sleep over is soooooo great because they play with each other all afternoon and night, they can mostly mediate their own disputes, they go to bed early and sleep like rocks because they're so tired from playing! But ... that's when I clean the house typically.

    The thing is my biggest pet peeve (not directed at you for what you said btw) but when people say "you have to stop trying to do it all, you're going to burn out!". Ummmm, ok, so which part of my life is optional again? Posting here and blogging is what I do for fun, I could cut that out and just vegetate instead, which at times I do, but honestly, there ain't one iota otherwise that is optional.

    But I manage to patch it together, some bits are harder than others. When we don't have a PCA is the absolute worst. Our PCA needs to stay home for the summer with her son during summer break and is planning to come back in late Aug. So I am counting the days .... and hoping badly that she does not change her mind in the meantime. Hiring another person is SUCH a hassle (and is done in all my spare time, lol) but we'll do it if we have to.

    Trish and I talk alot offline from here, we call it the high level club. If you're a caregiver to a high level quad, who truly cannot do anything for themselves physically, its just a whole 'nother ballpark than caregivers for lower level injuries. It is not a contest by any means, and I am not saying my lot in life is harder. I have a husband who adores me, and that is a huge factor that keeps me sane, and there are others who have a very low level injury spouse but they have issues with each other ... its all relative. But, as I was saying, when you are a high level quad caregiver it really is impossible to tell your spouse to just buck up and do more. As in physically impossible. Chad cannot feed himself, he cannot cath himself, he cannot dress himself, he cannot take his meds. He can walk the dog (and does), he can play on the computer and make phone calls (and does), he can play with our boy (and does), he can figure out which roofing company to use after getting 3 estimates (and does), asks my dad to do various chores about the house that would not occur to me (and does), but physically, I have to do everything. And so pushing independence onto him isn't possible.

    Hmmm. How did this turn into me?!! Sorry to the OP. Michaelm, if you want to chat offline, pm me and we can chat on email.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

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