feel bad

Discussion in 'Caregivers' started by Pixie, Jan 16, 2002.

  1. Pixie

    Pixie New Member

    Hi, I post very little and never get a reply, anyway helps just to write, I am a caregiver for my 38 year old daughter with fibromyalgia, her husband is quad. my 40 year old daughter has cronic fatigue syndrom, she has 3 children that I help with, getting them to and from school which is 50 round trip for me, my 82 year old mom help with her doc apts, and look after her, lost my husband 5 years ago with a stroke, have a 4 day a week job, am a fibromyalgia support group leader, and date some. soooooo what I feel bad about is when I have a good time, all the time I keep thinking about my daughters and how they would enjoy doing and being here, and can't because they are too sick, as a caregiver we have to take time for ourselves, but guess this is part of it that I just can't shake, do any of you have this problem? on my way to work, so chat later, have a nice day.
  2. mom

    mom New Member

    I answered you on the fibro board but didn't get around to answering you here.
    I have fibro and cfs so I am a caree not a care giver.
    Please do not feel guilty about going out and having a life beyond fibro. It really does make us feel better knowing that the people we love do meet other people and can have some fun, in the outside world.
    But when you get home tell your family about what you did. To see you smile as you remember all the little details is just wonderful. If you can make it so we forget our troubles that way it is a nice reprieve.
    Are you sure you aren't spreading yourself too thin with all your coming and goings. You sound so tired in this letter.
    Is there anyway that your grandchildren could get to and from school without you driving. A car pool maybe. In Ontario if you have to travel where the school bus doesn't go the gov. pays for a taxi to get you to school. I don't know where you are but maybe you could check into that.
    Do you all live together or are you spread out around the town. Maybe you could look into getting a place where at least some of you live together. I would maybe make your life easier.
    But please do not feel guilty about having a life. I know that is kind of hard to do but we do understand that you need to do this in order to not start (not hating) but not enjoying being with us.
    take care and try to relax.
    Mom Lynda
  3. Pixie

    Pixie New Member

    Thanks for your post, my 4 grandchildren go to private school, one daughter lives 10 miles from me the other 7, and by the way my oldest daughter teaches school so she takes them, but when one is sick or may have doc or dentist apt. then I take them, but not everyday, as I think the way it was written you thought I took them every day, mabe 2 days a week, but even at that with my schedule it seems lots to me. I live across the street from my mom, so right now can't leave this area, but thanks for thinking of me.
    And by the way, Willow ( on fms board) is my precious daughter, you may have read some of her post. she is 1 in 99 percent of people who stay in a situation such as hers. with taking care of quad husband, has a 14 year old daughter, and one of the worse cases of fms that I have ever seen, thats how I got envolved in the support group, soon we will put togather a BIG EVENT for fms awareness day May 12th, and on May 3,4,5 a confrence in Orlando, Fl which I hope to attend, it's about 40 miles from my home. the proceeds from last year event will pay for my stay, and others that may be able to go. hope to post info for those at a later date, the group write letters to our senitors,etc. this ads to my list of things that keep me busy, I hope and pray every day for the health and stringth to keep on keeping on. and yes I am spread very thin, at times feel like my efforts are not enough to really help anyone, so please keep in touch, love reading from anyone, and if I can be of help to board members, let me know, God bless and have a pain free day.
  4. mom

    mom New Member

    I think you are one terrific lady. Looking after your family the way you do.
    I answered a post by Willow saying I had talked to you. I enjoy reading her thoughts. She has fibro but she is a very strong person.
    I wish my mother would care just enough to ask how I am doing or say I can come for a visit and see if I can help in any way. But no luck there. It is just Don Danny and Raymond Christie and Sean now that make up our family.
    If you don't take time out for a breather you will just make yourself sick. Remember stress is a killer. So you must take time for yourself as you are doing it not just for yourself but for your family. What would they do if you did get sick. I know that they would survive but they will survive much happier with you there for support and love. Just when you do something you know they would like remember every detail possible and tell them all about it. Or bring home some sort of souvenier. Like the program from a play and if possible get it autographed. Or if it is a walk take a camera and get lots of pictures. Or take home some fall leaves to put in a vase.
    Little things like that brighten up everyones mood.
    Hope this helps a bit.
    your friend
  5. DogBoy

    DogBoy New Member

    First of all Pixie, bless you for seeing how much help your daughters need. My wife has had CFS for 3 years. We live near most of my close-knit extended family, but I was disappointed by how little help we got from them in the early stages of her illness. I think it's difficult for people who don't live with someone who has one of these DD's to understand the level of disability they involve. Your daughters are lucky to have your support.

    I definitely understand the guilt and sadness that can surround being out enjoying yourself when your loved ones can't. You have to realize, though, that taking care of yourself is part of taking care of them, especially when you're stretched so thin. If you wear down phsycially or emotionally, the whole family pays the price. It's easy, as a caregiver, to fall into the trap of feeling that your own stress, frustration, sadness etc. should be ignored because it pales in comparison to that of your loved ones.

    Very often, our own needs do have to go on the back burner, but that makes it all the more important to plan ahead to do stuff for ourselves. I've actually taken - at my wife's insistence - a week's vacation on my own each of the years she has been sick. This was hard to work out the first time when she still relied on me so much, but the level of my stress from taking care of her also made it more important for me. So I spent a week cooking meals she could pull right out of the fridge, hired someone to exercise the dogs to keep them quiet, rented her a big stack of videos, and made sure folks were available if she needed rides or anything else.

    I felt really guilty about leaving, and there were plenty of moments on my trip when I felt very sad that she wasn't there. On the other hand a week of fun and freedom refilled my tank and I was a much better caregiver when I got back. The stress and strain that had been building between us disapppeared and my outlook on life was much better. That sold me completely on the need for time away. It's easier now because my wife is much more independent, but it's still important for me to do things for me.
  6. Pixie

    Pixie New Member

    Hi, DogBoy, don't believe I have seen you post before, glad to meet you, and thanks for your kind words, my daughter is the one that makes me sad, her husband is quad, she struggles everyday just to get out of bed, or stand long enough to brush her teeth etc. I watch as she dresses her husband, sometimes crying in pain, last year we did take a week, took off to georgia, had her walk the beaches, she has fms, sooooo I am her caregiver, she is his, not much help from his side of family as his parents are retired and travel, they may look after the yard work, but as for his personal care do very little, today willow (my daughters board name) and I will go away for the day, even if I have to put her in a wheelchair.
    Your wife is a luckey lady to have your support and care, so many in my support group have no one at all, they struggle every day alone and in pain. sad sad, as we move along and growing in numbers in our group, my hope for this year is to get help for those poor people, again DogBoy and others , I thank you so much for your post, and words of encouragment, we need each other on a daily bases.
    Now, will say goodbye, and see how my willow is today, take care and god bless.
  7. patg47

    patg47 New Member

    Sorry you're feeling bad. I just joined this message group so really haven't had time to see how much response I get. I have recently become fulltime care giver for my 81 year old Mother who is in the early stages of Alzheimers, and have just moved her from her home of 21 plus years to my hometown. For now she is living alone, but don't know how long that will last. I just have to cross those bridges as I get to them, taking "baby" steps all along. I'm realizing that occasionally I have to allow myself some "me" time which is extremely hard to do because of the guilt you speak of. It's not an easy task to get past, but I think a very essential one for our health and well being. Keeping that in mind I wish you the best. According to all of the posts I've been reading we are far from alone.