who needs me today?

Discussion in 'Caregivers' started by Pixie, Jan 24, 2002.

  1. Pixie

    Pixie New Member

    When I say "who needs me today" that is what I mean, My 82 year old mom lives accross the street from me, every am she ask me "what are you doing today" I say " whoever calls first, and needs me the most" meaning willow (youngest daughter) fms, she has been in sooooo much pain lately, then cheryl, (oldest daughter) cfs, she may call not able to take her 3 children to school, 50 miles round trip for me. I know my time is so limited with each, that nothing that matters is being done, I don't know how to express in words what i'm trying to say, when I read over my own post, sounds like I'm upset with little things that I have to do, and mabe that is it, I would like to do more emportant things, cheryl and willow need to be watched more closely with the meds,eating,doc apt, and their follow ups, what this and that med does and does not do for them, what works, what does not, etc. do you see what I mean? those are the BIG things that matter, not running errands, etc. but if I were not able to do this, who would? so that is what stresses me, If I had more time to get the medical help for then and follow up on it, they could get better, it is just getting worse and worse, and I am getting older and tired, then what? don't get me wrong, whatever I do for my family, is a BIG privelage and love doing it, but how do I find the time in a day to do what I feel is more emportant?
    and thanks again for letting me express myself.

  2. DogBoy

    DogBoy New Member

    I thought this would be a short reply, but it just exploded. Sorry for so much rambling on.

    Wow Pixie. I don't think I ever had it as rough as you do, but I do remember that totally frazzled state of mind. It doesn't sound to me like you're complaining about the little things you have to do. What I'm seeing are the complaints of someone who's in a situation where there is more that needs to be done than she can possibly do. And to make manners worse, the things that don't get done detract from the quality of life of people you love who are already suffering way too much. It's a horrible distressing totally unfair thing to live with, so please don't feel silly or guilty for complaining. That's what this board is for.

    You wrote: "Whatever I do for my family, is a BIG privelage and love doing it." Forgive me if I'm being too blunt, but that sounds more to me like how you think you should feel than how you really feel. I know that when Sara was first sick and I had to spent 18 hours a day doing things for other people (working full-time and on a side-business, cooking, cleaning, reading about CFS, holding her while she cried, etc.), it wasn't a priviledge and I certainly didn't love it. It was a catastrophe and I hated it.

    That doesn't mean I wasn't grateful for my ability to care for her, or that I loved her any less. Heck, I fell even more in love with her from seeing the courage and determination with which she faced her sickness. My point is that we have to be honest about our feelings and vent them (I'm really not the new-age self-help type, no matter how much that sentence sounds like it :)). Being angry or depressed about what you're going through doesn't mean you love your family less. And it doesn't make you selfish or wimpy to have these feelings when they're so much worse off than you are. Emotions are emotions. Let yourself feel 'em without guilt and then get on with your life.

    Sara is always saying she shouldn't be so upset about her illness because there are so many people in the world who have it worse. Well that's just silly. Yes, it's helpful to remember what you do have and give thanks for it, but that doesn't mean you can turn off your rage and dissappointement about what's happened in your life. Paradoxically, venting these emotions (in the right time and place) will actually help mitigate them. If you deny them or stuff them, they just turn into this constant buzzing chaos of emotion that's always just below the surface. At least that's how it was for me. Find a place to vent. It can be this board, a friend, a journal, a clergyman, whatever. Just take some time to vent your emotions and you'll find that it's easier to get on with what you have to do to keep your family functioning. So that's the first thing I had to learn about loving someone with CFS.

    My second big lesson in dealing with this DD, has been coming to terms with the fact that I can't make it all better. I may want to be Superman, but I'm not. There are an awful lot of people working on this stuff who are a whole lot smarter than I am, and they can't fix. So how can I expect myself to? I had to learn to let go of some things.

    In my case, I know I always felt responsible for Sara after she got sick. If she was depressed, it was my responsibility to cheer her up. If she was overdoing it or making decisions I didn't like about how to approach things, I felt like I had to convince her to do it the "right" way. You know what? That's not my job. She's still a grown-up and needs control over her life. My job is to help her do what she can't do and be there to listen to her, not to take reponsibility for everything. In a concrete sense it's not your responsiblity to make sure your daughters take their meds, eat properly, follow-up with their doctors, or keep track of how they're responding to meds. Those are all things they can do for themselves. You might have to help with shopping, cooking, driving, doing some research, or tagging along to doctors in case of brain fog, but don't waste energy on worrying about how your daughters are doing their part. I'd wager that they can handle that just fine. You need that energy for things you can control.

    Finally, I learned some concrete pracitcal things too. The first is to consolidate effort. It's easy to fall into a pattern of always putting out fires instead of planning ahead to do things efficiently. I had a real hard time the first few months getting Sara the quality of meals she needed. I just didn't have time to cook every night. So, I'd consolidate efforts. Whenever I had time to devote 2 hours to cooking, I'd make a whole bunch of things at once. I'd make a big pot of soup, a pot of beans, cut up a huge salad and seal it, and BBQ a bunch of chicken all on Sunday afternoon. That would drastically cut down on what I had to do during the week. Do the same thing with errands. Instead of waiting 'til you have to do something, think ahead and plan your errands strategically so that you can do them in big bursts instead of having to run around several times a day. You may be doing all this, but I know it took me a while learn.

    On the flip side, some things need to be broken up into littls pieces. For instance, you clearly don't have time to sit for hours each day pouring over the research that's out there. So maybe take 15 or 30 minutes a day to sit down to read an article or 2 and take notes. It may seem insignificant compared to everything that's out there, but within a few weeks you'll start to have a feel for the medical options that are out there.

    Actually, I have more lesson. If there are people around that you're close to, don't be afraid to ask for help. I know I was disappointed with my family's response when Sara got sick, but I think it was just a case of people not understanding the disease and not knowing how to respond. I think a lot of people would have been willing to do more for us, but we never asked. I was proud, and somewhat angry that help wasn't offered the way it would have been to a family-member with cancer or surgery or some more common health problem. In hindsight, I think people just didn't understand and I messed up by not educating them.

    I'm sorry if I sound preachy. It's just that I remember being really frazzled and overextended by caring for my wife, and you sound like your pretty on-edge yourself. You can't live like that forever. Fighting these DD's is a project for the long haul. Your daughters are blessed to have you in the fight with them. You've gotta take care of yourself too though. Don't forget that.
  3. Pixie

    Pixie New Member

    Hello DogBoy, I did read your post this afternoon, and I thank you for it, will read it over and post tomorrow am, as I am very tired now. just wanted you to know that I appreciate you and others for their concern, but will answer when I am refreshed. OK?
  4. Pixie

    Pixie New Member

    Hello DogBoy, I want to thank you sooo much for your reply, there are times when I do get upset, want to vent anger etc. like when my oldest daughter calls me to help with 3 children, they have upset her, she can't cope with them, now I have to be the one to scold them, I do not want to be the bad guy, these are my grandchildren, the time we spend togather should be FUN, I raised these 2 girls myself, now it's my time to enjoy, not to take them to school, not to disapline them, not to take them to doctor, not to make sure they eat. etc. that upsets me. now my youngest daughter, her husband is quad. as I have said before these people are very very difficult. he says things to upset her, she will need to talk to me, and as a mother this upsets me very much, as I listen to her and advise her to get away for a while, she then starts telling me, " mom he doesn't mean any harm, what if you were in a wheel chair, drope something, have to call someone to pick it up for you" can't wipe his nose, etc. I tell her, " then if I were him I would certainly not upset the one that picks it up, or wipes my nose etc. then she gets upset with me. these are some of the things that make me,(don't like the word mad) but just down right MAD. and believe me if I were in the wheel chair, as active as I am, I would probable be more difficult to get alone with than he is. another thing that upsets me is, I lost my husband 5 years ago, am dating this man, when we go out I try to forget and have a good time, but think of how my daughters would like to be here, or how they would enjoy this dinner, etc. so guess you are right, I do get mad, I do get upset, I am mad because her husband is quad, upset daughters are sick, upset because I can't have a good time, upset because I'm tired and still have to go go go, because I have to do this and that, not the loving mother and grandmother things. because I can't find a cure, or cause for their illness, Now that I have vented, What now?
  5. kid4ever

    kid4ever New Member

    whew! reading some of this stuff - i just can't imagine how everyone gets through their day sometimes. my best friend (who is my adopted sister cuz i have no siblings) finally got a diagnosis cuz we were able to get a referral from co-cure.org good doctor list and he recognized symptoms right away.
    my friend is on her last leg - refused to see any doctors for past 10 years or so (other than for antibiotics for general illness) becuz of how she was treated when she had her last episode of cfs, was bedridden for over a year, all MD's told her she was crazy (after they poked and prodded her to death). because she was on her last leg, she agreed to see MD and thank goodness he was nice and gave her the validation she needed. now it's a matter of going through paperwork and red tape for home health care (she can't feed herself sometimes, cant get in and out of bed, has great difficulty getting dressed, bathing, etc)
    also fearful - no disability insurance other than through work which may pay 50% or less of salary

    don't want to lose house

    i'm taking on extra work to help pay for bills, mortgage, home care and MD as her HMO won't recognize or treat cfs

    i have felt scared, anxious,extremely angry (not at her but at the disease), sad, depressed, frustrated, confused, irritated, etc. for all kinds of reasons. I really don't like it when she says that she is not sick, she doesn't deserve to be off work, says other depression related things. I know it's cuz she's only 36 and doesn't want to admit she's disabled but sometimes i feel like if she would just allow herself the permission to rest and take care of herself instead of worrying about work (which she has a note to be off for a month)she may feel a little tiny bit better. MD actually thinks she should be off work for at least 6 months - she said she wanted to go back after 1 month.

    anyways - today was a better day - she was able to feed herself and smile a little - thanks dogboy for suggestions - we planned a picnic in our backyard if she feels well this weekend - i have been cooking multiple meals and freezing them - i try to let her make most of the decisions - i try to read a little each day (Attention deficit hyperactivity keeps me from reading for hours at a time anyway)

    pixie - hang in there and keep venting!! it helps us all!!


  6. Pixie

    Pixie New Member

    Guess what? my daughter does not have cfs, its bipolar and manic depression, she is on meds and doing good, and I mean better than in her life time. she was taking all wrong meds that put her to bed, could not take care of home her children etc. now she has gone to beauty shop, and taking care of herself her children and has a real life, you know, these med doctors think they are doing the right thing but all they do is put a sick person DOWN, so that they cannot think for themselves, now I'm wondering if some of these people with cfs may be helped with the right meds and right doctors. worked wonders for us and may for some of you. worth looking into. don't you think?
  7. kid4ever

    kid4ever New Member

    great to hear about your daughter! I'm glad she's better. Glad for her and you and everyone else you hold dear!! (big smiles!) I hope all goes well from now on - take care and
    God Bless . . .
  8. Charr

    Charr New Member

    Hi pixie, you express yourself jus like the rest of us caregivers feel. We love the people we take care of and want to be their for them and make things better. That doesn't mean we don't get tired, frustrated, and resentful, not atthem, but at our circumstances. My mom has Alzheimers. She was my best friend and we shared everything and since my dad had a stroke in 86 when I moved back home with them, we shared our daily lifes and decisions together. when he died in 2000 everything changed. Mom was diagnosed with Alzheimers and now she needed the care. My sisters care for her while I work, but she is my responsbility after work and weekends. I don't go out much either and when I do I worry about her constantly and am hooked to my cell phone in case they need me to come home. She is usually better for me than them, so she depends on me to be there. My sisters tell me I can go out,just let them know and they will come down. It's just that I feel I should be there for her when I'm not working. She is calmer and feels more secure when I'm home. I don't like to put more stress on her than this stupid disease does. She doesn't always remember who we are or where she is. It's a constant battle to make her feel secure in her own home because she wants to go to a home she lived in as a child. It's just a very sad disease to watch take your loved one away in mind. Some days I just cry for the loss of my dear mother and friend. You are trying to take care of everyone and you are getting exhausted yourself. I know it is impossible for us to take time for just us, but with all you do, you truly need a little TLC for yourself, even if it's a half hour a day, devoted to you. Your family is so lucky to have you looking after them! I'm so pleased to hear that your daughter received a proper diagnois and is doing so much better. Please take care of yourself as well. Talk to you soon!
  9. teacher

    teacher New Member


    I think that once in a while, you need to call yourself first! Then line anyone up that calls after that behind you.

    I can totally appreciate all that you're doing for your family. But please, please take time for yourself. Been there, paying for it!

    My parents are in their 60's and in poor health. My younger sister left the state and does not help. My older sister had a baby out of wedlock, dumped her on my parents, and disappeared. I have and still work to support myself. I was going crazy!

    I'm learning to take time for me. It's hard. I'm a perfectionist and have extremely high goals for myself. I'm trying to lower them and some days are OK. Others, well, I have to start from square one.

    Please don't feel guilty about being tired. Tired is a sign that you need to rejuvenate from within. Only YOU can do that.

    Run away and get a manicure, an all out hair styling session, a massage. Take care of YOU.

    I'll be praying for you and all the other caregivers out there.