a nuisance

Discussion in 'Caregivers' started by karenanne, Jan 12, 2002.

  1. karenanne

    karenanne New Member

    As a sufferer, it seems to me that sometimes caregivers look at us almost as though we were a colossal nuisance.

    How right is this, please?

    What can I do to make a miserable and sick self less of a nuisance to someone who is finding it hard to keep caring?
  2. mom

    mom New Member

    I am also the one who feels like a nuisance much of the time. I know we do lots of things together as a family and a couple. But we do it on my capabilities. Don and Danny both love to walk in the bush for hours. They don't do it now because I can't participate. Don loves canoeing but now it is short little hops with lots of stops and him worrying if I am tired or sore or just other little things.
    I know they care about me but it is so worrying that some day in the future Don will wake up and say I can't take this anymore and that will be the end of our life together even if he stuck around. The love would be gone on his side.
    I don't think this would ever happen but that is how I feel some of the time.
    I don't have any answers except be yourself and continue to try and that is all anyone can ask of us. Healthy or not.
  3. karenanne

    karenanne New Member

    My fears precisely.

    Sometimes there seems to be small signs and you think...does that mean...did he say/do/look at me that way because of all this....and does that mean that....and so on.

    And when there are expressions of fed-upness, or worse, even though they may have been said in exasperation or at a point of extreme stress, you cant help wondering.

    This dd does enough on it's own to destroy our self-esteem and self-confidence, doubting and worrying about this erodes it even further.

    I don't know what to do....
  4. mom

    mom New Member

    I don't know what to do about it except what we have been doing. Live for the good days few though they may be.
    We have to have faith in Don and Martin and I don't think it is misplaced. Heck they haven't deserted us yet. So that is a good thing.
    I was wondering how long have you two been married. Not important just curious. Don and I will be married 26 years in April. Seems like I have known him forever and sometimes it feels like I don't know him at all. I have only known him 26 years as well.
    I was dreaming about you and Martin the other night. I will email you and tell you about it. I have some questions about your house as well. They figure big time in the dream.
    take care
  5. BonnieB

    BonnieB New Member

    I never feel like my husband ,who has CFS, is a nuisance, but I do get very frustated because I cant do anything. I think that is the worse feeling of all..the helpless feeling I have..I know all the hugs in the world will not make this go away.I support him the best I can. I think I understand him more because I have alot of my own health issues too.I know what it is like to feel terrible on the inside, and look ok on the outside. I think it is terrible for doctors or the public in general to take not believe you because you look ok. What do I have to have a deformity or be in a wheel chair to be ill? So I do understand. The only thing I get upset about is the sleeping. All my husband does is sleep. Sometimes i dont understand why because it does not help him because he gets no refreshing sleep. Sometimes I feel very alone even when he is here.But I love him no matter what and will continue to support him all the time.He will never be a nuisence to me, and please dont feel like you are either.
  6. Pixie

    Pixie New Member

    Hi, BonnieB you said it, the hardest part of being a caregiver is, not knowing what to do, just washing a few dishes or clothes, pick up the grandchildren from school etc. what good is that? well if some of these caregivers could see my daughter (she has fms) try to do those simple chores, and struggle with every move or step, we can stop and realize what these LITTLE chores (to us) really means to them. soooo that alone can be more help to them than we realize. as for their pain and illness that I am sure is what you and others are refering to, and I agree, I watch my daughter struggle daily just to get out of bed, and not only does she have to get herself dressed etc. her husband is quad. bowel routein, get him dressed etc. and believe me these people with a life sentence in a wheel chair are difficult on top of her illness, so when you people see us as caregivers getting depressed, it is really a feeling of helplessness, I feel that I cannot get sick, no time for that, pleas my dear ill ones, do not ever think you are a neuseince to us, I do not know the whys or resons that my 2 daughters are the sick and not me, they are young, they have familys, but only God knows, and we have to eccept it and do the best with each situation, and while I am rambling, let me say, some of your feelings as the ill ones and stressed out feelings, is to watch your mother takeing care of you, when by all means, you should be taking care of them, that is a quote from my daughter to me, go it is a visious circle that causes stress to the ill and the caregiver. but again do not think you are a neusence to me EVER, you are loved, if you have a caregiver, that is love, I see and speak every day to fms/cfs members of my group, that have no one to care for them, that is very very sad, as we go from day to day, God give me and others the health to keep on keeping on, and thanks to all for letting me have this time to express myself. have a wonderful and pain free day.