I’m on another emotions rollercoster
AnonymousJune 16, 2008 at 1:02 pm
Helllo, this is my first post. My husband reads the site all the time. We are a year 1/2 out. My husband is in pain all the time. Is like my husband fell into a pool of sharks and I’m tapping at the glass trying to get in and all I can do is watch the sharks eat what I know of husband away and every day I lose a part of me.
Some days are better then others on how we treat each other. Sunday was not a good day. I was very moody because I wanted to get dress and the kids would not let me. I got mad at my husband; asking him to help. he has been down and not wanting to do much and I lost it . It not good for the kids to see us fighting. I thought we were ok tell my son ran a fever in the middle of the night and my husband started to blame me for letting him get hot.
I get blamed a lot for things and then we make up and go on are way.
But, this time I’m still sad. I’m not sad because I’m with him I’m sad because I can’t do everything. Why can’t I take care of the kids and clean the hosue and do everything and just let him be there. I want to work with out him..before he got sick he would give the kids there meds and I would do the loving part. I wish I didn’t need him to make myself work. it would make both of our lives easier. I’m not the best mother or wife but, I try. I’m just not getting it done and I’m tried. I thought I would be better at this by now…
AnonymousJune 16, 2008 at 1:39 pm
I want to say that I am very sorry you are going thru a bad spell. I cant relate to being a caretaker to a GBS or CIDP patient, as I am a patient myself.
There are a few things I can relate to tho. I know as a caretaker in general…my mother recently died from breast/lung cancer. I was with her day in and day out….I work fulltime and am married with a young child and was in the process of preparing to move to a new home. I went to my mom every day without fail and spent weekends with her. It killed me on the days she wouldnt try…at the time I didnt know she’d be leaving me so soon…I’d get angry that she was giving up…I resented having to go every single day with no time to myself. It can be just terribly hard…but now, I realize why I was there…why I never showed her that I was bothered…b/c I loved her and she needed me…and now I’d do anything for one more chance to be “bothered”.
My situation, as I say, is different b/c she was terminal…and she was my mother. As a caretaker there are so many emotions we deal with and what you are going thru is normal. I am sure someone will come along with great advice…but I hope you know you arent alone and it will get better.
As a CIDP patient, my life has changed so much. I used to be the one that did it all….the house was immaculate, my bills were paid on time, i was never behind in my work and my husband and I had a normal marriage. I still have a very hard time accepting that I cant do it all…I cant do half of what I could….and that is an ugly slap in the face. I want to do more, I want to BE more…I want to teach my son to ride a bike as I run behind him so that he doesnt fall over. That isnt going to happen…I CANT run…I can barely walk somedays. But, yet, I get up and go everyday just as tho there is nothing wrong. I walk into my work at 6a barely able to lift my legs most mornings.
My life as I knew it, is over and that’s a hard and jagged pill to swallow. I’m young…I want more out of life…why me ? These are things I face every morning and every night. In the meantime, I realize how lucky and blessed I am b/c so many are worse off than I….many have little to no family…many arent able to work or drive.
There are many people here to give support and friendship and prayers and here you will get the encouragement you are looking for…I’m sure.
Remember, your husband is probably going thru a “letting go” of his old self just as you are.
Try to keep the communication open b/c that is so important….hold onto those children and love them like the miracles they are…stay strong…
I wish I could help you more….in the meantime, I wish you the best.
AnonymousJune 16, 2008 at 2:18 pm
I can only talk from a patient side. It is hard for me to accept that I can’t do everything I want or feel I need to do. I can only imagine what it is like for my wife.
I sent you a PM with a prayer written by Oscar Romero before he was killed. I hope it offers some comfort and inspiration.
AnonymousJune 16, 2008 at 3:24 pm
Thank you for your kind words. I just hope one day I can feel like I am not a bigger burden on my husband then he is on me. I love my husband very much and I try to act strong like he does but, in doing that I stuff all of my emontions down so deep that when I can’t stuff no more I erupt like a rocket on fourth of july and I end up being mean or short to him in some way. I feel guilty that it comes out that way. When I love and worry about him all the time. What kind of person is mean to a sick person? I have even yelled at him for falling down. I was so worried that he would hurt himself. I just wanted him to be more carefull. Hopefully, with me getting out my thoughts good or bad will help me be a better person and start each day new and accept that I can’t do it all. Thanking for listing to me and not juding me. jaine
AnonymousJune 16, 2008 at 10:59 pm
God bless the caretakers! With out people like you in our lives, each day would be so much harder on us. What often happens though, as a caretaker, we worry so much about that person that we forget to take care of ourselves. I want you to know that you are not alone in your struggles. But I also want you to find some time that you can take care of yourself. No one should or does expect you to do everything.
I am like Stacey…I love a clean house, kids taken care of, three course meal on the table every night. What I had to learn was that there was only so much I could do and only so much my husband could do. We had four little kids at the time I was sick so he too was burning himself out. Ask yourself, as you face each little task, in the big picture, if this doesn’t get done today, what is the worst that could happen? If the answer is nothing or nothing life threatening, then let it go.
Don’t be afraid to ask family and friends for help/support. Sometimes, just having them take the kids for an hour or two so you can have a “bubble bath”, or read a magazine or just veg out on the couch can help you to cope with the stress of being a caregiver. Treat your self kindly, with dignity and respect and it will come back to you one hundred fold.
Please come here and vent to us. Even if we are not caregivers, we have had to rely on someone at some point in our illness to care for us, so there will always be some here who understands. We have big shoulders and can take what ever you lay on us with us never judging you. As my kids would say: “Been there, done that!”
God bless and look forward to helping you through this trying time in your life.
AnonymousJune 17, 2008 at 9:04 am
I found out from reading past and present post that although I was the patient, it would be hard on the caretaker to go through this illness with us.
My husband (caretaker), thought he had to work full time, come home fix meals, do laundry, clean house, mow lawn, take care of our cats and help me with all of my needs.
I thought he was going to work himself to death with a heart attack if he didn’t slow down. I convinced him it was ok if something didn’t get done today, there is always another day.
He slowed down and things don’t get done like they did before I got ill, but that’s ok, I have him.
Slow down Janie, not everything needs done today or the next day.
Take relaxing time for yourself.
Caretakers are special.
AnonymousJune 20, 2008 at 8:59 pm
My name is Barb, and I too am a caregiver. My husband has been unable to work for over 5 years now. I have one piece of advise. ENJOY THE GOOD DAYS. I have learned that I can’t do it all, and if the grass gets a little to high, so what, it gives the neighbors something to talk about. My husband and I have a great marriage, and always have. We were high school sweethearts and still are. I too get mad at him when I am tired and just can’t do one more thing, but that’s when I remember all that he has done for me over the years. He diapered the kids when I was tired, cooked a special dinner, brought me flowers, ect…. All these things are special and I know in my heart that if he was still able, he would still be doing them. I do a couple of things for myself that help: I take a long bath and read each evening (I have fibromyalgia and my dr recommened this and I found that added benefit was that I get to relax and enjoy 1/2 hour of quiet). I do this no matter how late it is, this is my time. I also get up early even on the wkends and make my self a cappicino (sp). Just for me, no one else likes them, This is another moment of quiet. We have had some rough times, and trust me, your husband feels really bad that he can’t do all that you need him to do.
We try to do something on his good days. Whether it’s going to a flea market, out for breakfast, and just sit on the porch and watch the storms. These are now my special memories.
It will get easier to not do everything all the time, and he understands your hard days just as you understand his.
There is nothing harder than watching some one you love suffer and feel that you can’t help, but being there is the best thing you can do.
Take care, and know that you are not alone.
AnonymousJuly 4, 2008 at 12:00 am
I have just joined the forum. I recently found the forum for caregivers.Some of the posts make me cry. When my husband falls or canot do things for himself like he used to he takes it out on me. We have been married for 33 years. We married young. I was 18 he was 21. All our marriage he has always taken care of everything.It is hard I take over some of his duties. I hired a lawnguy to help with the yard work. My husband cannot dress himself anymore I button his shirts for him. I just feel like he does not appreciate me. I cannot take his attitude anymore. He hurts and is depressed. My husband is on a medical leave from work . He still works he had to have surgery, he wants to keep on working so he feels whole. I quit my job to help take care of him. I would sometimes have to work late in the evening and he would fall when I am not there. I sometimes lay in the bed and cry when he is asleep so he does not hear me. It seems like all of our arguments are about his illness.You say your are on an emotional roller coaster I feel the same way. I feel like there is nobody I can talk to about this . I do not think friends or family will understand.
AnonymousJuly 4, 2008 at 10:33 am
Hey cookie girl…
You have come to the right place. We are here to listen and support you. You will get through this. It takes time and patience. I was the person who was ill so I can empathize with your husband, but I have also been a caregiver and know the stress that brings.
I am thinking that perhaps your husband is grieving the loss of his independence and “manhood”. He was used to taking care of everything and now he can’t do that. That in turn, leads to depression. Depression shuts down our abilities to communicate effectively, to empathize and see another person’s perspective. You also may be grieving the loss of the man you married and knew before this illness hit. I think you both need to talk to someone…a counsellor or your family physician. There are meds that they can give you to deal with the anxieties/depression. This is a hard time for both of you and as a caregiver, those of us who are ill could not get through it without your love and support. But that being said, one thing caregivers often forget is to take care of the caregiver.
I hope you find reassurance and help through these forums and that we can give you the support you need to get through this time. We need cargivers in our lives and thank you for being one!
Take care and God bless..
AnonymousJuly 4, 2008 at 5:55 pm
Janet thank you so much for your kind words. I am trying really hard to get through this. You are exactly right about my husband. He was a marine. He coached little league, he liked to do yard work. He recently picked up a hobby. He bought some little models of airplanes and cars, he haS TO HAVE SOMETHING TO KEEEP HIM BUSY. hE BOUGHT A MINI AIR COMPRESSER SO HE CAN AIR BRUSH PAINT HIS MODELS INSTEAD OF HAND PAINTiING SINCE HE HAS TROUBLE WITH HIS FINGERS WORKING. He has not stated on aNY OF THEM YET HE HAS JUST BOUGHT EVERYTHING TO GET STARTED. mAYBE IF HE HAS SOMETHING TO DO HE WILL NOT BE SO GROUCHY.
AnonymousJuly 8, 2008 at 11:50 am
You are right thinking your husband may need something to do that will make him feel valued. When we sit idle, the brain starts to work on us and our thought processes begin to wander all over the place. It is so easy to convince ourselves things we would not otherwise believe.
It would be very helpful if you could find something that he can do that would benefit you as a caregiver and him as a husband and father. It could be something simple like folding towels, reading to the kids…be creative. Even small things can make life easier for all of you. Let go of the things that aren’t so important. It is tough but you can do it. Be patient with yourself and with your husband.
Keep us posted.
You must be logged in to reply to this topic.