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Thread: Caregiver burnout???

  1. #11
    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 .

  2. #12
    Senior Member Van Quad's Avatar
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    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.

  3. #13
    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)

  4. #14
    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 .
    Were you reading my mind Bonnette?

  5. #15
    Quote Originally Posted by LindaT View Post
    Were you reading my mind Bonnette?
    We are pretty much of one mind here, indeed!

  6. #16
    MSWIFE!

    I know I'm on the other side of this issue with MS...but when my dad was diagnosed with leukemia and with mom's heart issues I had them come live with me. So, then I did the caretaker thing and worked fulltime, and cleaned my house, mowed the lawn, got groceries etc., etc. Fast-forward 12 yrs.

    When I no longer could clean the house and my husband does most care for me...plus runs a business...gets groceries... everything!!! I hired my neighbor to clean the house once a week for $35.00. Through the week I can still pick up stuff and clean the kitchen except the floors. She does the more involved stuff. It really does take the pressure of Larry and makes me feel less guilty (because I used to do everything).

    Seeing a therapist can help, but it takes 2 or 3 sessions just to get them up to speed. Even longer to get the dynamics of your family. Is there a support group for caregivers? They would "get you" in just a few minutes and have ideas you could use right away.

    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.
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  7. #17
    This place has been a haven of SCI info for me. I understand so much more of my husband's pain.
    Just bitching about the chair issues saved my sanity last summer.

  8. #18
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    Quote Originally Posted by JEAPOW View Post
    It sounds like you are just overwhelmed, we are mom's and wives and we think we can do it all we are woman as the song goes. It is real life and after 5 years you have the right to hve a little melt down. You are not a failure you are human, and it is ok. Your children will remember the great mom and the caregiver you hve been (I suspect they see what you hve gone thru) A nap might be nice but the issues do not go away, thts why this forum is so good you are talking with people dealing with similar problems. You are working and your life has really changed you should be applauded for the great job you hve done. I do not know how you feel about praying or listening to music KLOVE is an awesome site you can type on this and listen to thier music at the same time . Just remember to take a deep breath, let your heart guide you--you can do this and yes your job is probably harder than his.... you are in pain also...good luck..
    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.

  9. #19
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    Quote Originally Posted by jody View Post
    sounds like you need a break from something. it would be lovely if your family would just get a clue and maybe come vacume, dust and whatever for an hour. a nap might help, if it lasted a week or two with room service, and you didnt have to worry about if you husband was getting proper care while you were gone.

    I had a lot of fun one winter when my son left his paintball gun at my place. I plastered the back of my neighbors moldy garage with paint balls. it was the best thing at the time for keeping me from falling off edge. I had to go replace them but ended up getting some glow in the dark ones and pink ones and that is how the neighbor figured out how I was letting off steam. I think I really miss moldy old sheds and paint ball, so if I get it worked out, you are invited to come over to my place and come shoot the hell out of something, and maybe get a little cheap vacation in south carolina.
    Jody you made me laugh and I really needed that too. When David first got sick I was busy knocking walls out with sledgehammers and tearing out carpet, laying hardwood floors, laying ceramic tile, widening doorways, etc. etc. I guess that was the way I was letting frustration out in a sense too. Prior to David getting MS he had broken his back and during that time I actually busted out two concrete block walls to make doorways in our crawlspaces in the basement. I don't have any more walls that aren't load bearing though so I can't do that anymore. Funny thing is David does have a paint ball gun downstairs, maybe I will get one too and we can just shut the h**l out of each other and maybe we both will be good to go for another five years.

  10. #20
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    Quote Originally Posted by marmalady View Post
    Caregiver burnout is very real and it is exactly what you described. Talking about it here is, in my opinion, much more helpful than talking w/friends and family who don't/can't understand. I don't blame them; there's just no way they can possibly understand unless they've been in your shoes.

    I don't know what your financial/insurance situation is, but the best thing you can do is to try and get some help which will give you some relief. I'm not necessarily talking about help with David, but even help with housework or shopping, or whatever it is that stresses you out the most.

    Put aside some time each day that's just for you - if you only feel like you can do a half hour a day, start with that. But make sure everyone understands that barring a true emergency, that time is yours! To take a bath, do your geneology, talk a walk, talk on the phone; whatever.

    As for the issue with David blaming you for not making him better, he needs to understand that's his problem, and not yours. He may need help working through that, but to place blame on you isn't appropriate, and doesn't even make sense.

    Can you talk w/your doctor/pastor/ a counselor? Some folks have taken antidepressants and its worked for them; for me, it didn't work at all, and they just made me not care - about anything! I've ended up working through things myself, and think I'm stronger for it.
    Also a small caution about talking w/a counselor - I've been to 3, and although the reasons I've gone have been with my issues, the sessions all ended up being more about my son than me, so I just quit. So if you do talk w/a professional, make sure to set the groundwork right off the bat!

    Every single one of us has been in your shoes. Every single one of us has felt the way you do, both with being overwhelmed, sad, angry, and grieving not only the loss of our normal lifestyle and relationships, but our own personal loss of freedom. After 12 years, hubbie and I do pretty well most of the time, but we both have our moments when those 'hopeless, helpless' feelings surface. The major mantra in our house is "It is what it is"; somehow that helps us put things in perspective, and to not dwell on what was in the past, or how much we've lost, but to take each day as it comes to us, and try and make the most of just that little bit of time.

    Stay here, talk, don't ever feeling anything isn't important enough to talk about on these forums.
    You are right, everyone here does seem to understand alot more than family. Alot of that may be my fault too. I always tell them its ok, everything is alright. But I don't want to burden them or air my dirtly laundry and have them look at me weird. Now they all think I have been doing just fine. Honestly I have been doing ok, but I am wearing out. Taking time for myself is so much easier said than done, I mean how am I suppossed to? Like Linda said, everytime I say ok I am going to do this this or this, David or my youngest daughter or the phone or the door or the dogs or the cat or somebody always seems to need me. Taking a bath lately and this is gross and I can't believe I am telling you all this, but lately I haven't even had time to take a shower, I have gotten one good shower in a week and the rest of the time it has been a quick sponge bath for me too. By the time I have time to take a shower I am so tired I don't feel like it. Writing in a journal, when he first got sick, I made superior notes about everything, in hopes that one day he would get better and I would be able to give those to him so he could see what all had happened, I faithfully done that for about 4 years but thats depressing, looking back and it and we have come such a long way but the friends aren't coming over, its the same old same old story.
    Financially, ok thats the big one there. On paper it looks like everything is fine, meaning I work for the Post Office, government job, get paid great, I think I make $45K a year or close to, great benefits, retirement, and all. David gets social security disability about $20K a year, and our daughter gets half of that and she works too. She is responsible for everything she needs or wants herself and I don't take any of her ss, but she knows not to ask me for any money too. David had money put into annuities before he got sick, we have that dwindled down to about $9K, we own his van, my jeep for the mail route, his old truck, our shop truck (we also own our own business) which is another problem I will try to remember to tell you in a bit, and him and I both have Harleys. So I have the dept of rehab coming in two weeks, they say David can't have over $17500 in assets himself, don't count the house and his primary vehicle, so now my problem is I have to convince him to start selling stuff and he doesn't want to. Deep down I don't really want to either cause that makes me feel like I am failing to but I can't live paycheck to paycheck trying to pay for everything and not getting anywhere. I can't afford to take a day off to go to therapy, I can't afford to hire anyone. The MS society is buying his depends and thats it due to funding issues too. I have rattled on long enough and honestly am forgeting half and what i wanted to say.

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