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Thread: Caregiver burnout???

  1. #21
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    Quote Originally Posted by jck77 View Post
    MSWIFE1, I'm fairly new here, but have always been impressed when I see your helpful comments on this forum. I'm so sorry that you're feeling down right now, and as others have said, this isn't a reflection on your abilities as a caregiver (to either your children or your husband). Everybody (including people who have much less responsibilities and worries) reaches this point sometimes. I agree with others on the thread who have advised taking time for yourself, meditation, a hobby (like the geneology one you already have) and getting outside help. When you think you don't have time for any of these things, remind yourself that time is what we make it.
    Julie
    Thank you so very much, that means so much to me. I have always been the one to make everyone else feel better, even before the MS. I think that is another reason this is so hard for me to come to terms with. You are so very right as is everyone who has posted to me I need to understand that I can't keep saying I don't have time because one of these days it will be to late if i don't take time. There I said it.

  2. #22
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    Quote Originally Posted by Bonnette View Post
    MSWIFE1, .

    Honestly, I don't see anyway around it. It is just so hard to deal with, and counselors usually don't get it - by the time you get to a counselor, you've already tried most of the things they're trained to suggest. That can make you feel lonelier than ever. I agree with Linda, the situation reaches a fever pitch, and then it simmers down for awhile. Sometimes the periods between peaks are very short. There is so much fear, it's impossible to describe to people who aren't dealing with it - When will the next shoe fall? What if he/she doesn't have me to be caregiver any longer? How will he/she survive without me, and I without him/her? Who will go first? What if one of us needs an ambulance and the other can't follow or visit? And all variations imaginable. Regrets and guilt are shadow companions - what if (fill in the blank)? On and on. I think that honestly acknowledging it is about as therapeutic as anything can be, and knowing that people here get it. And allow me to give you another .
    Bonette, you have hit the nail on the head. I have these thoughts on a daily basis. Another bad secret of mine that even my family has not noticed is that I am smoking about three packs of cigerattes a day. I have tried to quit and everytime I do I start back up worse than before. I have tried the medications and patches, etc. etc. and it just doesn't help. My point is that I keep telling myself how stupid it is that I am going to have a heart attack one day and who is going to help me. If I have a heart attack laying in bed next to David he wouldn't even be able to call for help, that tears me up thinking that I may die laying next to him and then what? And then what happens to him, who is going to take care of him. But on the other hand I don't want him to go before me. Death scares the hell out of me but yet I am killing myself with the cig's and working to hard.

  3. #23
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    Quote Originally Posted by Van Quad View Post
    It drives me crazy when people say this to me, but I have to tell you caregivers that your strength is humbling. Especially those of you south of the 49th. You seem to receive so little support from the powers that be.
    (((Vanquad)))) This means so much to me. Thank you very very much. Speaking on behalf of all the caregivers, I don't think we are told this enough. Maybe in the beginning when friends and family are first aware but after awhile it kinda just becomes old news and they don't say it anymore, so when it gets to the point like where I am at now, it really does help to hear it. Thank you.

  4. #24
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    Quote Originally Posted by gjnl View Post
    Hi Lisa,
    I know it may sound like an overused suggestion, but in the time that your husband has been injured, have the two of you been to couples counseling? I don't mean ordinary couples counseling, but meeting with a counselor who specializes in working with couples who have suffered a catastrophic disease or injury.

    I know from reading some of your other posts that David is the love of your life and the two of you have suffered through and achieved so much together, but when there is anger, when there is blame, when there are unattainable expectations on the part of the sick or injured person in the relationship, it becomes incredibly difficult for the caregiver to shoulder the burden. David has got to find a way to deal with his illness and disabling condition, without saddling you with his inability to accept what is.

    I have no doubt that you could go on forever with the caregiving, your job, financial challenges, changes to your family dynamic if you didn't have to shoulder David's tendency to blame you, i.e., "I hate it because he is mad at me for not making him better." I think this one sentence that you wrote in your post is the tipping point for your frustration, your feelings of being overwhelmed and feelings of failure. You and David have been so busy and overtaxed dealing with his day to day needs that I don't think either one of you has absorbed and integrated the changes David's illness has meant to your relationship. Ask your doctor for recommendations for a counselor who specializes in couple dynamics when there is serious illness or injury. Call the MS society in your area and ask them for recommendations. There is help and not just with the chores and physical things that need attention. I hope you find that help very soon.

    With care,
    NL (GJ's wife for 41 years and caregiver for 28 years post spinal cord injury)
    We have never been to counseling and doubt very much that I could ever get him there. I mean litterly I could all I would have to do it take control of the chair but he wouldn't talk to them. He always makes jokes about everything when anyone else is around. You are right too though, the 20th was our 20th anniversary. You know what we did? We spend 3 hours in the shed making some stupid snowplow for his wheelchair so he could plow snow. Not for our driveway but for when I take him to the woods that way he doesn't get stuck. Ok, this is just plain stupid, the plow is made from a 4x4 post with a 2x4 that is cut at an angle and then a piece of plywood for the blade, none of this is treated wood so wet snow is going to tear it up, then the other problem is he thinks the weight of his feet is going to keep it on his footrest, ok, he doesn't have the strength to keep it on the footrest, it's going to fall off, he's going to run it over and get stuck or tear something up. But he had been on me for a month to do this stupid thing so I finally gave in to shut him up. Sometimes this MS stuff effects his brain and he acts like a little kid. I can't even get him to take his dirty cup to the kitchen. I have spent all this money and time remodeling this house to make it more usable to him and he won't even try to do some of the household things he would rather build something in the garage or be outdoors. But all those things he can't do by himself. I am trying to find someone who come tinker with him but not having much luck there. I have explained till I am blue in the face that if he would help with the household things while I was at work I would have more time to do the things he wants done when I get home. No luck there either. I have went on strike and not done anything, thats a big mistake. It just piles up on me.

  5. #25
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    Quote Originally Posted by Snuz View Post
    MSWIFE!

    People are like balloons...bare with me...when they get stressed and have nowhere (safe) to go with it it fills them up until they can't hold anymore and they blow. If you let alittle air/stress escape here and there you/it doesn't blow up. Just a safe understanding group could help. An MS group or Spinal injury group...the hospital may have one.

    As far as David, he's maybe gonna be angry, and scared, and stressed and feel guilty that you are having to live your life like this. A myriad of feelings can well up inside and cause him to display some "inappropriate" behavior at times...let him vent. I know its hard for both of you. Larry and I go a couple rounds verbally atleast once a week. I can be "his worst nightmare" seriously.
    I like the balloon idea...its true.

    Thanks for understanding. David and I usually have our weekly blow up too but thats whats wearing on me. We both have gotten so hateful in those outbursts that it hurts. But deep down I don't mean half of what I say and I don't think he does either. Its just this stupid disease and what its done to our family.

  6. #26
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    Linda, I havn't forgotten you. I know you of all people understand what I am going thru and I hate that I have to feel like this, I have tried to be so strong and there for you and now this. You know the whole mother in law deal, well now he has been calling her and his sister on a daily basis and trying to make things better with them. That toppled with him being nice to his friends that do absolutely nothing for us and then talking crap to me is wearing me down quickly. I mean I have been there daily since this whole ordeal and his mom walked out the day I transferred him to a different hospital, his friends cant take him hunting or fishing, its been me, but if he calls them and and they say no its ok, but let me say no and omg the world has come to an end. Our business, I never did finish that part of my problem, where my daughter and son in law are basically running everything, I go in and do bookwork and thats pretty much been it for awhile now, anyway isn't doing very well at all. I really don't know how much longer I can keep it open. I want to close it but David says no, do what I have to keep it open, he doesn't like our competitor and doesn't want him to get our customers. Not worried about finances or me, just our competitor. I mean there again, I feel like I have failed at his business but its really just the economy and my biggest fear is telling my daughter and son in law, they are the onese who are going to suffer more than anyone.

  7. #27
    Quote Originally Posted by MSWIFE1 View Post
    We have never been to counseling and doubt very much that I could ever get him there. I mean litterly I could all I would have to do it take control of the chair but he wouldn't talk to them. He always makes jokes about everything when anyone else is around. You are right too though, the 20th was our 20th anniversary. You know what we did? We spend 3 hours in the shed making some stupid snowplow for his wheelchair so he could plow snow. Not for our driveway but for when I take him to the woods that way he doesn't get stuck. Ok, this is just plain stupid, the plow is made from a 4x4 post with a 2x4 that is cut at an angle and then a piece of plywood for the blade, none of this is treated wood so wet snow is going to tear it up, then the other problem is he thinks the weight of his feet is going to keep it on his footrest, ok, he doesn't have the strength to keep it on the footrest, it's going to fall off, he's going to run it over and get stuck or tear something up. But he had been on me for a month to do this stupid thing so I finally gave in to shut him up. Sometimes this MS stuff effects his brain and he acts like a little kid. I can't even get him to take his dirty cup to the kitchen. I have spent all this money and time remodeling this house to make it more usable to him and he won't even try to do some of the household things he would rather build something in the garage or be outdoors. But all those things he can't do by himself. I am trying to find someone who come tinker with him but not having much luck there. I have explained till I am blue in the face that if he would help with the household things while I was at work I would have more time to do the things he wants done when I get home. No luck there either. I have went on strike and not done anything, thats a big mistake. It just piles up on me.
    I know it can be hard to get some one to accept counseling. But, there may be ways you can work counseling in with an aspect of MS that is rarely noted and treated by physicians. MS commonly causes mental illness and psychiatric conditions, and I not referring to depression. Serious psychiatric problems do occur in about 50% of those afflicted with MS. These disorders can manifest in mania, personality disorders and sometimes psychosis. The reality is that you, family, and friends are not equipped to deal with these serious mental conditions. David's behavior and attitude toward you borders on spousal abuse and he needs help and medication to get a handle on the problem. You, family and friends, can with the help of mental health care professionals and his attending physicians, do an intervention. But all of this takes time. You should set the wheels in motion by having a discussion of David's mental condition with his physicians. They may be able to convince David that there is this mental disturbance component to MS and that there is treatment for it. You are a thinking, feeling, loving person and you don't deserve nor should you allow yourself to suffer this abuse. David may be mentally disturbed because of the MS, but he can get some help with this.
    I wish you good luck with this and hope that both you and David can get help.

    NL

  8. #28
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    Quote Originally Posted by gjnl View Post
    I know it can be hard to get some one to accept counseling. But, there may be ways you can work counseling in with an aspect of MS that is rarely noted and treated by physicians. MS commonly causes mental illness and psychiatric conditions, and I not referring to depression. Serious psychiatric problems do occur in about 50% of those afflicted with MS. These disorders can manifest in mania, personality disorders and sometimes psychosis. The reality is that you, family, and friends are not equipped to deal with these serious mental conditions. David's behavior and attitude toward you borders on spousal abuse and he needs help and medication to get a handle on the problem. You, family and friends, can with the help of mental health care professionals and his attending physicians, do an intervention. But all of this takes time. You should set the wheels in motion by having a discussion of David's mental condition with his physicians. They may be able to convince David that there is this mental disturbance component to MS and that there is treatment for it. You are a thinking, feeling, loving person and you don't deserve nor should you allow yourself to suffer this abuse. David may be mentally disturbed because of the MS, but he can get some help with this.
    I wish you good luck with this and hope that both you and David can get help.

    NL
    Where did you read that at? I have never heard "MS commonly causes mental illness and psychiatric conditions, and I not referring to depression. Serious psychiatric problems do occur in about 50% of those afflicted with MS. These disorders can manifest in mania, personality disorders and sometimes psychosis." I would really like to look into this further. I know it causes depression and I know that steriods could cause some temporary odd mental behaviors but he hasn't had any steriods since 2006. He is on an anti-depressant and I had that changed to a more powerful one about 2 months ago. The MS society said to call Faith in Action, I called them and they said they only deal with 60+ seniors.

  9. #29
    Quote Originally Posted by MSWIFE1 View Post
    Where did you read that at? I have never heard "MS commonly causes mental illness and psychiatric conditions, and I not referring to depression. Serious psychiatric problems do occur in about 50% of those afflicted with MS. These disorders can manifest in mania, personality disorders and sometimes psychosis." I would really like to look into this further. I know it causes depression and I know that steriods could cause some temporary odd mental behaviors but he hasn't had any steriods since 2006. He is on an anti-depressant and I had that changed to a more powerful one about 2 months ago. The MS society said to call Faith in Action, I called them and they said they only deal with 60+ seniors.
    My dear Lisa,
    I know of what I have written because I have had two dear friends with spouses suffering from MS who have presented with mental illness issues. If you search the internet for "MS and mental illness," there are a number of articles and papers written on this subject.
    I know you are internet savvy enough to find information for yourself, so I won't post any number of sites for you to investigate here. But, I also urge you to find an MS forum website where you can communicate with others who are dealing with the rigors of this disease. On this site, many of us who are caregivers (and who care about you) can empathize and sympathize with caregiver issues, but an MS caregiver forum may give you more support with the issues you and David are dealing with because of his specific disease.

    Dear lady, I hope you find some help and peace.

    NL

  10. #30
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    Quote Originally Posted by MSWIFE1 View Post
    Your post made me break down and litterly cry last night, thank you. I mean really I needed that. It kinda flushed out the system and made me feel so much better. I know my kids know what I have been going thru, they are really the only ones. I just feel like I have missed out on so much with them. My oldest, who is just 20 is already married and has a baby girl thats almost 1 now. So figure that one out, she got pregnant when she was still in high school, says she didn't do it just to get out of the house but I really wouldn't blame her if she did. I could completely understand it if she would just have told me yea she was sick of the stuff around here and had to get out. Thats not the problem though, I love my kids with all my heart too and would do anything for them. They know that, but I haven't been able to go to their school functions because David didn't feel like it, or I was working, I mean really all of my complaints sound like I am a single mom trying to do things and in a way I am. I am just tired and a nap doesn't help.
    Again you are selling youself short, is your daughter happy, she has given u a extension of her love. It sounds like u hve no free time, can anyone stay wth David so you can do the mom functions that u would like t go t? If he does not want to go don't let tht stop you and don't be afraid to let him know you are disapointed. Where do you live I think we need to hve coffee? My heart goes out to you sister and I would love to think these chats help. You took a big one for all the caregivers, wives and maybe a little pat on the back for u...
    close your eyes and again take a deep breath, then put your head in a pillow and scream if u need t.....God bless..By the way my name is Jeane and I am from Ohio
    JeAnNE L1Burst Fracture inc. 11/5/10

    Live Well--Laugh often

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