I have tried every thing to get family to "Understand"

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Jul 18, 2008.

  1. rosemarie

    rosemarie Member

    I have tried every thing I can think of to get my daughters to understand that because I have fibro there are things I don't do well. Like remembering things , being in the middle of talking and forgetting a word like it is suddenly gone. I have alot of pain and my girls hate it that I take major pain meds. I have been told that they each know some one who lives with fibro and still works daily , does not take pain meds {narcotics} still exericses daily.

    Guess what? I am not that person, I was talking with my Mom yesterday joining in the converstaion she was having with a neighbor. I was talking and then the word I was going to say was "gone" I was blank but felt like I knew what word I needed to say but could not retrive it from my mind.

    I hate having that happen as every one plays 20 questions is it this or that or -----? I can't answer as it is not comming out of my mouth.

    I have issues with my brother last summer at this time my Mom was critcally ill and was going to need a long term rehab and as the person with the medical power of atterney I knew where she was going to go and I talked to the social worker but when I brother spoke to my Mom she had a moment of being in realitiy. And stated that she never said she wanted to go there. She had been to the rehab once before so I thought that it would be ok as when I had to talk to the social worker about the plans she was out of it.
    During some of the conversations between my brother I had said I knew where Mom wanted to go and what would be best for her. But I don't say the exact words in every chat we have. WE talked about her care now and in the future and as I spend 99% of my time with Mom I know what is going on with her health, who her MD is, what meds she takes and that I have her total trust to make a desision for her care.
    Brother caught me one day out side her room and told me that I was lying to him because I never said the same thing twice and when I said that I had talked to MOm I did not say that it is an every day thing I thought that he would know that as I take MOm to doctors , get her scripts that I would know from our converstations what is in her best intersts. He felt that all I had done was lie to him about her care, how she had been acting , it was scarey to see her so out of control and he didn't belive me that she was as out of it as I had said.

    Mind you I had been with her at the hospital every day for her whole stay so I saw every thing that happened to her. He came to see her one day and she was kinda with it but had filpped out earlier in the day,, he didn't believe me as MOm said that she was just fine and knew where she was. She didn't but that is beside the point.
    He went so far as to book a room in a rehab that was 100 miles from home, friends and most of family. He wanted my cousin to check in on her daily because she was a nurse while in canada. Now she works at a really nice reitrement home and this rehab was next to it. As she is the administrator of this building she didn't have time to check in daily or even spend more than a few moments with Mom . I asked her about this rehab and I was told that it was nicely furnished but she knew nothing about the rehab program. OR if MOm could stay there since she didn't have a doctor there in that city.

    Brother was so angry that to this day he will not admit that he was butting in or that I really knew what was best for our Mother. He used to help me out when Mom was sick and at an out of town hosppital but he stopped it that day and has informed me that he will never help me out again. Even if the situation has nothing to do with MOm.
    MOm picked her own rehab her in Logan where family friends are . My brother was pissed of becasue he thought that I made up her mind.
    He does not speak to me when he visits here and he has made it very clear that I don't know what is best for our mother. He does not tell me that he cares about me any more and it really hurts me. He does not know how badly he hurt me back then and I really try to let go of this but I have a mother who wants me to not feel hurt about this and let it go as if it never happened and I know that in the future it will happen again as she is not well , {weighs 91 lbs}
    How can I get him to understand that I don't remember word for word what I say to him or any one else, How do I get thru to him that I need his support and understanding when It comes to Mom? He does not belive that I have any thing wrong with me and that I take far too much pain meds and as a police officer he tells me that if I were to bring MOm to see him and I drove he would make sure that I was stopped and tested for drugs and driving under the influance.
    Thanks to the HIGH gas prices that is not going to happen as I won't take her that far away from home.
    I feel so hurt that he thinks I have lied to him about mom's conditons when I have not.What can I do? I really have tried to let it go but it gets brought up often with MOm wanting to know what happened to her then.
    Still hurt by family and brothers words,
    Sorry this is solong.
  2. rosemarie

    rosemarie Member

    Thanks for your post and thoughts. I will work on what you suggested , I need to let it go and forgive him because he really does not know how hard I took his words. I know that it really hurts me more than him since he has no clue that he has hurt my feelings well that is not true I tried to explain the day it happened but he would not talk about what I said so I still don't know what I said that mad him so mad.

    He lives over a 100 miles away and I don't see him often so putting it in the past should be easier since I don't have to talk or see him .
    thank you for your thoughts
  3. homesheba

    homesheba New Member

    i can so totally realte!!!
    i feel like i have also been called a liar so many times, to-
    maybe not to my face but with looks and innuendos.
    it does hurt cause they all have absolutly NO idea what we go thru
    to just be able to live each day as a 'normal' human....

    i am so tired of it all.
    i hope your bro wakes up to the truth.
    im sorry you are having to go thru this.
  4. Marta608

    Marta608 Member

    First of all, I agree with caledonia about the CoQ10. I suggest you start with 30 mgs. every three days, then move it up to two, then every day and see how you feel. You might get so you can take more.

    As for your brother, I agree with jam but then we don't pick our families, only our friends. If you're determined to communicate with him about mom, you might want to do it in writing. Of course, he'll find something wrong with that too.

    I have only recently realized that for my entire life I have spent most of my energy trying to please everyone else. I'm officially DONE with that. You might want to ponder that, too. It feels a lot more peaceful.

  5. landra

    landra New Member

    I'm having issues with a brother who lives out of town (not as serious since our parents are deceased), and I have to remind myself that I am not in control of HIS PERCEPTIONS. Nothing I do is right according to him.
    There used to be a book called "What you think of me is none of my business." I thought that was humorous way of reminding us that other people's perceptions should not concern us.

    I would do the communicating in writing - AND keep copies. At least if he ever escalates more, you will have proof. Also even before brain fog, I'll bet none of said said exactly the same thing twice! You might remind him that in interrogations saying the same thing each time is considered a sign of a LIE - and not the truth!!~

    Try to not let the turkeys get you down!~
  6. rosemarie

    rosemarie Member

    Thanks for all the replies about my post. I have tried some of the suggestions that you have suggested.
    Homesheba: thanks for understanding what has gone on between my older brother and I.
    Caledonia: I will check out the co-q10 and see if it will work , I will try any thing once.
    marta608: I am going to try the co-q 10 and see if it will work for me, It is hard to find comfort with in family when they don't or won't try to understand what your going thru.
    Landra:I know that I have problems with with family and I am trying to get them to understand my life, I think your idea about writing a letter to my brother and keeping a copy of it. I know that he wonld not get it and accept what I say to him .
    Anchorholds:I think that some of my issues with my brother are from our childhood, I am younger than him and I do remember when our father died he really became bossy and tried to order me around. I remember having a date and he did not want me to go and tried every thing to stop me from going. HE did lots of things back then and always had to be the boss. In control, I know that he does not like me having control in my mother's life. I have asked him if he thinks that he knows what is best for her ,I added a question for him DO you know what illness's Mom has had? Do you know what meds our mother takes, who her doctor is, why is she on meds any way do you know any of this and he does not.

    IF I thought that he could under be there for Mom when she is sick I would give up the power of atterney but I know from past illness that she needs to have some one that can stay with her when she is out . She does not remember what has happened and she feels so alone. I can't stand her feeling lost and alone, needs her family around. I stay with her for days and take care of her not because I love her and want to be there with her.

    It has nothing to do with who she likes best. She has given my brother every thing that was my dads because he is the ONLY boy in the family so all the things from Daddy , my grandpa, have gone to him because he is the only boy and it would mean more to him. I would love to have been offered some of those things because they do mean a lot to me also but he is the only male .
    Thanks for all the support you all have given to me it means alot to me.
  7. rosemarie

    rosemarie Member

    Getting the family to understand what is happeneing and acceopting all that happens in my life seems to be confuseing to them. I know that they know other people who live with fibro and but don't neeed pain meds like I do. I have other issures besides fibro, Osteoathritis, DDD, spinal stenosis, and other things like chronic pain. They dont' understand the need of narocitics and are afarid that I will be come addicted to my pain meds. I have it under control in fact I just got rid of a 20 days supply of one pain meds. I thought that it wsa way to much to hae at home so i disposed of it. I have found that I don't always use the 3 pills of MSCointin I take a day so they add up and when it gets to high to have at home so I get rid of them asap. I can't be addicted if I can get rid of 20 days of pills and not even mis them as i have not taken the full doesage in over a year.j

    I try to take what I need and some times I don't take lal of the script like I should. I am trying to get my act to gether and have the doctor reduce my meds to just 2 a DAY. bUT I some times have I still need teh one extra pill.
    What to do I do? any suggestions?
  8. Beadlady

    Beadlady Member

    When you are going through your meds--don't just throw them in the trash a child or a pet could get ahold of them and our water systems can not handle all of meds that are going down toliets. I'm not exacty sure what the proper way is to dispose of meds.

    Also, I hold onto pain meds--lock them up a closet or something--there may come a time that you realllly need them and won't be abl;e top get them.
  9. hi all,

    first let me say that i so feel for you all.

    its very lonely at times to have to suffer the frustrations of this illness.

    i can only comment on my own case here, and on my own family,but maybe you all can relate to what i say anyway.

    firstly,after reading on this site, and the MEA site,that M.E./CFS is no longer going to be in the catagory of a mental health issue (hooray says i).

    well ive now insisted that my family gives me a apology for thinking i was mental.

    when they argued with me,they always said very cruel things to me.very hurtfull things.

    i studied my family,and they didnt even know i was doing it.

    my daughter is hard working,suffers bad with PMS (period pains),and isnt a compationate woman.

    she is some what hard.but then she works nights, and doesnt get peace and quiet in the daytime while sleeping,as all around us, out doors is noisy.she prefers night shifts though.

    my son has a quick temper if we talk about money and jobs.

    he wants to chill out and listen to music,wont face reality,at times.

    my hubby,well to cut a long story short,he thinks i run a hotel,and he,s my guest for free,and just sits watching tv in fantasy land.

    they all get hateful when i talk about trying to cut back on the utility bills,and needing a holiday.

    i myself,well i feel am flogged to death.

    not looked after when im truly ill with the flu or anything that would make me bedbound at times.

    so basically,i live in the real world,and have to look after myself,as ive always had to do in my life.

    my family,,,

    well i think... am i even on the same planet as them? lol,selfish bunch one and all.

    now,im sorry to go on so,but heres my point.

    they have said sorry to me,for saying the mental word.and do now admit that they flog me with their idleness.IT MUST STOP.

    ive been proved as being tired/over worked, by my family and my boss.im not mental.

    but i find that my family run away when im ill with anything to do with migraines and the brain.

    they are frightened of my illness.they have admitted this to me.

    i wouldnt run away if it were them who had this brain/neurological condition M.E./CFS.but then ,im me,and they are them lol.

    families who dont cope with illnesses that they dont understand,will say horrid things to you,to hurt your feelings,in order for it to be exceptable for them to walk away while you are ill.

    then they come back when we are well/recovered.

    its cruel of them i know,but i suppose its part of being human,for some people.

    they hope that the illness will go away for good,and be forgotten.

    but because ours fluctuates and comes and goes,its a up hill struggle to keep our families together in harmony.

    we get ill,they get scared,shout at us and walk away,leaving us alone to cope.

    i found that i felt like running away when i was looking after my mum,who had senile dementia,and was having mini strokes.

    i loved that woman so much,but at times i wanted to run away, as i was scared for her,and hurt inside of myself because i couldnt make her well again.

    so i do know our family is scared when we get the head trauma,you know the migraine and fever,and go a bit senile (fibro fog).

    i dont get it often now,while im juicing,thank goodness.

    but find that when im ticking over nicely,my family think im their slave,in the hotel that is called home.

    nip that in the bud NOW.family must do things for themselves,if they are grown ups.

    with younger children its a different matter.

    you arent crazy,just in need of a caring friend who understands fibro/M.E/CFS.

    someone who would get you a drink of water and slice of toast, while you lay in bed recovering from whatever put you there in the first place.

    remember that we here understand what you are going through.you arent truly alone.

    take care,love fran

  10. Lucislight

    Lucislight New Member

    Dear Rosemarie,
    It sounds like your brothe is in deep denial about your health condition as well as you mothers. She obviously has some form of dementia. Try to get in touch with your local Alzheimers Association-if you have one because they can be a world of help and have SO much information they you could have them send to your brother. Your Mom's condition sounds classic alzheimers/ We had to put my Dad in a long term facility after a year of trying to manage it. It was so hard and still is! Your brother has no right to condemn your actions because he is not there. If he were in your shoes he would quickly change his tune and probably bring her back to you! Let me tell you -someone needs to be close to check on her -even in the best facilies. People are very different and her needs may be very different than someone elses. And as well intentioned as some of these caregivers are they don't "get it". I just spent a whole week trying to get my Dad's diet revised because he is diabetic with compromised vessels in his feet. They were trying to force me to give him too many carbs and processed foods-and they are supposed to be the experts! His glucose levels were so high he was staying in bed because his feet hurt-well NO DUH!!!
    Your brother has no idea how hard this is-so fire some information off to him and tell him he has no right to complain until he has done the research. Do the work before you speak - is my motto now. He obviously has not done ANY research or her or your disease. He couldn't be a police officer without going through boot camp and school. put it to him that way-he needs to go through the education process before he can claim to know anything.-hope this helps! -L (PS you might want to send him info on FM-it is a recognized condition -by doctors now -so maybe he should put that in his pipe and smoke it!
  11. stumped

    stumped New Member

    I think Jam is right and there are great suggestions on this thread. Your brother is closed minded and does have control issues which probably has made him an unpleasant person to be around with anybody. What a shame. I suggest you tell him "You mind is like a parachute...It only works when it is open".
    I am a father and Uncle to my daughter and niece who both have FM and I have a hard time understanding this disease. It absolutley baffel's me. They both have different thresholds of pain and fatigue and are both in different stages of FM. There is a saying by Herbert Spenser which say's " There is a principal which is bar against all information which will keep a man in everlasting ignorance. That principal is contempt prior to investigation" I hope your brother is referred to this site by you. Myself? I was tired of being ignorant to FM, its symptoms and wanted to know what the hell was going on. I will be very honest and frank with you. I have never made statements to my daughter or niece as what I have read about your brother and many other ignorant people as saying to those afflicted by FM. I dont believe in calling family members liars. I jumped into this site with both feet and have been welcomed by jam,marti,pam and many others who have taken the time to explain to me what FM is about. I thank God for them and you! I appreciate you Rosmarie for voicing your frustration. It helps me to understand your plight. Your brother is an example of "what I do not want to be". lucislite is right too. He investigated the proceedures on how to be a policeman. What happened? He set a goal, investigated and obtained knowledge. He should set another goal. How do I become a loving and supportive brother. Life is an on going learning experience. It never stops. I feel sorry for him. He is obviously missing out on a beautiful relationship with his sister. I think your serenity is more important to you. Give yourself a brake from all ignorant and controlling people. Work on you and you will probably see that....What they think of you is not important. What you think of them "is". Find your peace and dont let anybody disturb it. I appreciate you. Stumped Pop. Rick
  12. tangie

    tangie New Member

    I understand exactly where everyone is coming from in telling u to let go, forgive and forget; there right but they r forgetting to tell u the easiest way to do that. This is just my opinion that i want to share with u, not fact (except to me,) but i cant say it will work for everyone though. The easiest way to forgive and forget in this situation is to write a letter. Write ur brother a letter and explain everything to him that u just said to us. Tell him how he hurt ur feelings and how bothered u r because he distrusts u and doesnt blieve u. Let him no that even if you have never needed his support b4 in ur life, u really need him to support u and attempt to understand that the things u may do, u do bcause u have an illness and u need him to understand this. Once u have written this letter and mailed it to ur brother, u should be able to let it go; give it to God and let him handle it. If it is meant for ur brother to come around and understand he will contact u and make the next move. U did the best u could by letting him no how u felt and how his actions affected and still affect u, and after that if he wants to communicate, he will contact u. I wish u all the best and may God bless u.
  13. Honora88

    Honora88 Member

    I've noticed a pattern for me that trying doesn't work. There is a push of energy people don't like. On the other side, when I don't push then people feel pulled energetically to understand what I am going through.

  14. Adl123

    Adl123 New Member

    Hi. I haven't been on the board for a long time,and I'm really sorry to hear that you are having troubles with your family.

    I took care of my mom for 15years, before she passed away, I

    consider it a privilege, and I was more than glad to do it,

    of course, but I have to tell you, that the stress of it

    almost broke me. I also became worse during that time. It

    is. No wonder your memory is tired!

    Some people will never understand. They can't. What we

    experience is too far outside of their experience. I bet

    your brother is frustrated, and afraid for you, too. That

    can easily be expressed as anger, intolerance and

    impatience. Please have compassion for him. He has a lot

    to learn, that you already have learned. I long ago gave

    up having expectations for my friends and family. Now, I'm

    happier than I've been in a long time. Suffering is

    redemptive, and we can use it to help ourselves be happy,

    and others,too.

    Peace and joy,
  15. hubcap_halo

    hubcap_halo New Member

    I'm so sorry your brother does not understand, and will not try to understand. I've had family members who regard this as my "psychological problem."

    If only they knew how much I'd love to be able to work full time.

    I hope you can reach and understanding with your brother and definitely get to see your Mom!

  16. Missizzy

    Missizzy New Member

    Your story about your family made me very sad. You are right, you do have some education to do. I'd come over and bring you a glass of cold water and a slice of toast anytime, I promise.


  17. hi all,

    missizzy,bless your heart.it was so nice of you to reply to me,and thankyou so much for your kind words to me.

    i would come over and bring you a snack and drink,if you were poorly in bed too.

    we might be in pain,and feeling alone at times,but thank goodness for this treasured site,and its members.

    when all around us, let us down,our friends here just have the knack of picking us up again.

    take care,love fran