I guess I just need to be heard

Discussion in 'Fibromyalgia Main Forum' started by NashCag, Feb 26, 2006.

  1. NashCag

    NashCag New Member

    I was diagnosed with cfs almost 7 years ago, it's been a tough time. I needed to move in with my mom beacause I can't work and haven't been getting better.
    Almost a year ago my mom was diagnosed with ALS (Amyotrophic Lateral Sclerosis, a.k.a Lou Gehrig's Disease).
    Some of you may have seen an episode of E.R that was about a patient with ALS. It's a Cruel and ruthless illness.
    Anyway, I am her caregiver and I'm scared out of my mind.
    What little energy I have goes to her, I am pushing myself further than my body can handle sometimes, but when we have no choice we do what we never thought we could.
    She's scared of what this illness has in store for her, we both are, but when she cries It takes even more energy from me and I feel like I can't take anymore. Then I feel guilty for not giving more, and I end up crying for hours, alone in my room. I don't know if I'm explaining this well enough, or giving it the right words. I think I just need to be heard. I've got so much fear built up inside I don't know what to do with it all.
    What am I going to do when she gets worse and worse, I don't know if i can do more than what i'm doing now.
    I stay up nights pleading to God that I don't think I can do it. And I don't know anymore if he can hear me.
    I don't know what I need from those of you reading this,
    maybe just to know I'm not alone, maybe I just needed to unload some of this fear, maybe some of you have been in a situation sort of like this..I don't know. But just knowing I can say stuff like this to people I know care, helps.
    I do feel a little lighter.. so that's good.
  2. PVLady

    PVLady New Member

    I understand what you are saying. It is a tough situation for you and your mom. I am sorry your mom has ALS, she must be frightened.

    Are you sure you are the only one who can be your mom's caregiver? I mean are you the only child or do you have any brothers or sisters who can help financially to hire some outside help.

    I am just not sure the answer is for you to become her exclusive caregiver without looking at all the options.

    With my mother, we had her in a lovely "assisted living" facility, and she really loved it there. They were much better in attending to her needs than I ever could have been.

    In assisted living, it is not a nursing home, many are very nice - and don't cost that much. If your mom owns a house or has any assets you can pay for it with that money. You might consider visiting some "assisted living" facilites just to see your options.

    If you are not well, you may not be the best one to assume the role of caregiver for your mom. In the "assisted living" you can decorate her room just like home. They prepare and serve all the meals, housekeeping, beautician, assist to dress and eat if necessary.

    It is alot to be 100% responsible for everything - and in the end, you may not be doing what is best for her.

    I remember my mom tried to be a caregiver to my dad when he had Parkinson's. It was a mistake, she did not handle it very well.

    I am just saying for you to think about all your options. My mom had always said she never wanted to be in a nursing home - she did not know the difference between that and "assisted living". After she got there, she was so relieved and did very well.

    Lastly, if you do a search under "google" for assisted living Arizona, it pulls up alot of information.

    [This Message was Edited on 02/26/2006]
  3. jaltair

    jaltair New Member

    I'm sorry to hear that you have this responsibility, it will get greater. The other post had a very good idea in exploring all other options.

    I'm not familiar with services in AZ, but there should be some help through Social Services. I know in CA there are information and referral centers set up through the Area Agency on Aging. There must be something similar in AZ. An information and referral service can help you in discovering othe options.

    You and your mother need care and you cannot be the one to do all of her caregiving. Please explore the other options.

    I will keep both of you in my thoughts and prayers as you get through all of this.

    Warm hugs, Jeannette
  4. neen85

    neen85 New Member

    Your Mom may qualify for help at home if she has insurance or medicare/medicaid. They mey be help with housekeeping, errands and personal care as well as taking her to doctor appointments. Can either of you seek caouseling on a sliding scale fee at a local mental health center?

    Either or both might take the stress off of both of you. Daneen
  5. Hope4Sofia

    Hope4Sofia New Member

    You are truly in a very stressful situation. I'm so sorry. I agree with the others that you need to find help. This is too much for a healthy person. I'm just so sorry this is on your plate. I can't imagine if my mother was ill and in my care. It must be completely emotionally and physically draining. You are in my thoughts.

  6. lilchisler

    lilchisler New Member

    First of all, I am so sorry about you and your mom. I have been sharing the care of my mom, who has multiple heart and health problems, with my brother and I will tell you the truth...it is nothing compared to ALS.

    Everyone here is giving you good advice...to search out all of your options. I, unfortunately lost a dear friend to ALS, but she was able to have a much longer life expectancy and greater standard of living due to at home health services and the help of family and friends.

    This is too much for one person to bear.
    This has to be some of the saddest news I have heard in a long time. I am sad for you right now. I feel like I should not even post. I don't want to make you more sad, but I do believe that you need to know that there are much better treatment options than even 10 years ago, when my friend finally lost the battle. Just 2 years after that, they had found new meds and treatment that were remarkable.

    I don't know what to say except please seek out all of your options.

    I cannot imagine your worry and hers on top of you suffering with your own illness.

    I have no words that can touch you deep enough to say how sorry that I am for your news and that I am certianly putting you and your mom on my daily prayer list.

    God does hear your prayers! Please don't give up.

    My friend lived near Chicago and went there for a "new teatment" option and that was 10 years ago and she had remarkable results...unfortunately she was too far into the illness to be totally put into remission.

    I think it was the Chicago University Hospital, similar to Mayo Clinic or MOnroe Clinic.
    If you get on the internet and research treatment options, you will find places that you can call for more information concerning ALS.

    I wish I had more information at this time to give you.

    Don't lose hope, miracles happen every day, but don't be afraid to ask for help and accept help if offered.

    Peace be with you...from "LILCHISLER"

    P.S. I pray I have not offended or hurt you more by this post. I am a "new" oldie on this board, so I am not known that well, but I would never hurt anyone here intentionally. I know we are all baring enough injury on our own without me adding to it, so please forgive me if I have overstepped.

    I jsut had to write because my heart broke the minute I read your post.

  7. Hope2Bwell

    Hope2Bwell New Member

    Dear Nashcag,

    I noticed that you have been sick with CFS about the same amount of time I have been...seven years. Also, I am just two years older than you.

    I am very saddened to read of your situation. I am not real familiar with ALS and how devastating this illness is.
    It sounds like many others on here have given you some very good advice and suggestions to help you. I do hope that you have some other means of help and support for both you and your mother.

    Many days, it seems, that dealing with this horrible illness is more than a person or family can handle. I hate to see someone such as you "have SO MUCH on your plate". In my opinion, you are already on OVERLOAD, now.

    I am just so very sorry for you! Just FEARING what "life has in store" in a situation like this is SO PHYSICALLY and emtionally draining!

    I JUST really don't have any good advice for you, but, I wan't you to know I do understand CFS and this aspect of your life. AND, MOST OF ALL , I AM THINKING of you and sending (((((((HUGS)))))) your way!

    Take Care,

  8. CinCA

    CinCA New Member

    It is so good that you've gotten some great information from others who responded to your post. I am sorry I don't know more, but I hope you can find the help both you and your mom need to get through this. The body is an amazing thing, and I know you can handle more than you think, but you are up against a huge challenge, too, and don't ever think you have to bear it alone. What a scary situation...I can only imagine what it must be like...but your mom is so lucky she has your love. Don't ever forget that, and don't let this illness impact the relationship between you two.

    Keeping you in my prayers and hoping you find strength, comfort, and answers,
  9. sueliza

    sueliza New Member

    you are not alone in your feelings. Everyone goes through the doubts of being able to care for someone and sometimes it is just not physically possible to continue.

    My mother had terminal cancer three years ago and lived with me for a while. We were always very close and I wanted her with us. This was before I had fibro and I was in great shape.

    It was the hardest thing I have ever done in my life! My brothers helped some, but didn't understand how bad things had gotten.

    During one of her hospital stays when the doctor's said she could go home I broke down to my brothers and cried. I just couldn't do it anymore!

    Please get some help, being a caregiver is extremely difficult even when you are 100%.

  10. Lori_P

    Lori_P New Member

    I wanted to strongly suggest you contact the Muscular Dystrophy Assoc. Years ago, my mother took care of my grandmother who suffered from ALS. THEY WERE amazing in all their help. Their help was immediate also. Insurance, I don't believe was an issue. Research... Help is there for you. My prayers.
  11. NashCag

    NashCag New Member

    I'm going to have to read all of these replys again, because I've become so overwhelmed by the kindness you've given me and I cannot finish reading. I just wanted to say Thank you, you've given me hope.
  12. atiledsner

    atiledsner New Member




  13. Bambi

    Bambi New Member

    services in AZ but we do have a lot I'd never even guessed we have; from Meals on Wheels and everything from there on. As with everything it usually depends on your mother's assests, but if she has a lot of things it might even be worth considering giving things to relatives etc now that she'd intended to eventually anyway. Sometimes it what ever it takes to get the help you need..if it was me I know I wouldn't hesitate to give up some of my worldly possessions to get the help.

    But much of it doesn't seem to require that you have a super low income or you just need to find out.
    There is a site called Eldercare also
    dealing with AZ benefits besides the
    State site.

    I took care of my mom with her cancer, though unfortunately it wasn't long, as well as for my father in law, also not long. Even though I
    did try to take some of the burden off the blood family for him, I'm not sure I wasn't a little resented but they did step back and let me. I adored him also and nothing, no matter what my own pain and exhaustion would have held me back. But like I said both were short term
    and nothing like what you are facing.

    I know you love your mother and "want" to do all you can, but I'd try for at least respite care or day care to give yourself a break. They do also have house cleaners and a variety of things..don't feel at all
    embarrassed for asking! That's what
    these agencies are there for and you NEED to preserve your own strength also.

    All of my best wishes and prayers are with you and I admire and think you are a wonderful, sweet, precious gift in your mother's life..we should all be so fortunate to have a child that
    loves us enough! Try to pace yourself as you can, rest all you can and see your doctor to see if you may have some depression going on. You might need and find help from some anti depressant (can't spell kat today, sorry!).

    There are days I feel like I would give my arm away for some help at home with (at this point) sorting, straightening, cleaning, companionship even..so I know it must be soo hard on you. My friend took care of her husband and dad, both in wheelchairs for over 15 years and it
    wore her out. Please take care of you first, you will be no help to either
    one of you. I hope you can find someone to spell you occasionally at
    least. I'll shut up but I am so touched by your post I just don't even know what all to say!! Be well as you can and God bless you!!
    ((((((((Hugs! Bambi)))))))))
  14. NashCag

    NashCag New Member

    You're Advice, suggestions, and prayers have been so comforting. It has already helped me and my Mom, and given
    us ideas we didn't have before.
    It has also made me feel like It's "okay" that I can't do it all alone, and more willing to find help. It's almost as if I felt getting outside help was lettering my Mom down in some way, but now I realize getting help for some things will give me more strength to do other things.

    So Thank You all, I'll let you know how things are going.
  15. Mikie

    Mikie Moderator

    Sweetie, you have too much on your shoulders which aren't strong enough to care for the both of you. See if there is a local Agency on Aging in your area. They are a great resource for services. Talk to someone at your church, if you have one. Call the Salvation Army; they are really great at helping people.

    You need help coming up with a plan so that your Mom gets the help she needs without completely draining you of your energy. As her needs increase, your ability to meet them likely isn't going to be there even though I know how much you want to care for her. It's got to be hard for your Mom too, knowing how little energy you have.

    Exhaust every resource and find out what options you have. My heart goes out to you and I pray for you and for your Mom. God bless you.

    Love, Mikie
  16. marw

    marw New Member

    I am so very sorry to hear of this sorrowful thing, and the difficulty it causes...and I can see what a wonderful person you are and how much you love your mother.

    My best friend was the Primary caretaker for her Mom for many years...her Mom had Diabetes, congestive heart failure, dementia, and was in a wheel chair. It is sooooo Hard!!

    To help your Mom, you must first help yourself, as you might begin to know already. Even though you may feel helpless right now, you are not. First, get some help through the resources suggested to you by others above. No matter where you live, Medicare, or Medicaid (but I think it is Medicare) will send a Social wroker out to evaluate you for services. So call them. THen you should be able to get a nurse to come to your home several times a week plus extra housekeeping services, and therapy for your Mom. You will also get a Care-givers Support Therapy Group (counseling for yourself.) I hope you will take advantage of all these things...they will help your life and your Mom's very much! If she has S.S. you can use that money to hire additional caregivers to help you out.

    My friend did not have FMS, but she did have an artificial hip herself, arthritis and many medical problems of her own. So in order to be the Primary Caregiver in such a situation, you must get help. Otherwise you will not be as much help as I know you will want to do.

    I hope this letter does not sound harsh. I do no mean it that way at all....only that you find some resources, and a way to manage all this. Of course, there are good assisted living facilities, buy my friend did not wish these for her Mom, so she took this other way.

    Some of what I hear is grief for your Mom's condition....not just the difficulty of caring for her, which I know you undertake gladly....so if you can get some counselling for yourself first, or at soon as possible....it will help enormously. My friend loved her Support group, and her Social Worker was also a big help to her.

    Will you post again and let us know how you are doing? I am worried about you, because this is such a big undertaking for you. I know you are strong, but we all need help. I am planning to get some of these services for myself, and I have only me to worry about.

    I will be sending healing thoughts and energy to you.

    Take care, and trust that there will be a way!
    Thinking of you,
  17. Cromwell

    Cromwell New Member

    I think we all live in fear of ALS, and it is scary she was dx'd when older too.

    I do understand it has some forms that are not as awful as others, I read this somewhere. If only they could find a cure for that.

    What a terrible stress for you too, my heart goes out to you.

    You must see if you can also arrange for her to have Hospice care at home too, which deals with all terminal illnesses, or some other caregiver to lend a hand. Also Meals on Wheels.

    Love Anne C
  18. springwater

    springwater Well-Known Member

    I cant say much nashcag; i dont know what to say; I dont have any advice as such but you already have been given those and i know theyre going to help.

    What i can do is pray and ask others to pray for you and your dear mama. After all, we're told Jesus brought the dead to life and made the blind to see; for you and the others He can do as much.

    Im sorry you had to go through this - I wish you recovery and for your mother to get well too and if not then for her and you to have the strength to handle all this. I wish you most of all peace and happiness all your life.
    And thank you for being there for your mama.

    God Bless
  19. jane32

    jane32 New Member

    Hi I think it is really nice that you take care of your mom. I hope thigns are alittle bettter for you these days.

    I saw a post awhile ago about seasonale. Does that still help you?
  20. tlayne

    tlayne Member

    What a wealth of info you can find here! I didn't see respite for the caregiver. The office for the ageing will have a ton of info for you.

    Please don't feel guilty for seeking help. You have to take good care of yourself, or you will not be able to care for your mom. I just bet that your mom will be thankful for the added help, and I am sure that it will ease her mind that you do not have to shoulder all of the weight. Sending prayers for you and your mom. Tam

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