Announcement

Collapse
No announcement yet.

Needing support badly :(

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Needing support badly :(

    Today I got off work early but instead of going out for friends to happy hour I spent an hour on the phone with Cobra explaining to them why my husband needed his gabapentin to function. Then I came home, sat in the hallway and sobbed. As for the friends? No one had even asked me to happy hour. Why? Probably because I havent been returning texts or phone calls. Dealing with MS has pulled me completly away from my friends. It's hard to relate with people who whine about the beautiful house they are buying or how they spent too much money at target. Meanwhile I am paying $1000 for cobra, $600 for MRI's and wondering when the next huge bill will come rolling in. I know that I should look at other MS patients or the Boston bombing survivors and say wow, look at them, look how lucky I am but that just makes me more depressed that I am having such a hard time dealing with this. It's funny because when this all started in January, I was the strong one. Now that things have calmed down a little, I feel like it is all sinking in thats its not going away. Help needed from non judgemental people.

    #2
    I'm so sorry that you're having such a hard time. Being a caregiver to a loved one is one of the most stressful things you'll ever have to do. I am the one with MS in my family and have watched my husband go through the same emotions that you are. He has been angry, sad, and extremely frustrated. Then he feels guilty for having the feelings in the first place. What you're going through is completely understandable. We are in the process now of seeking help to communicate better with each other and speak honestly about our feelings.

    This is a crappy disease to have but I think it's almost harder on the loved ones. The biggest thing I need from my husband is for him to be honest about his feelings, let me know when he needs a break, and quit trying to do everything. I would also strongly suggest a caregiver support group. It's always nice to know you're not alone. But above everything else take care of yourself, letting yourself get beaten down can happen quickly if you don't pay attention.

    I sincerely hope that your situation gets easier for you and your husband.

    Take care, Susan

    Comment


      #3
      Please remember to take care of yourself even if it means hiring someone to come help care for your husband so you can have some respite.

      This is a horrific disease and sadly it seems many downplay the toll it eventually takes on our lives and our family's lives.

      I hope things get better, my heart goes out to you and all the others who are stuck taking care of those of us with MS who can't take care of ourselves.
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
      Anonymous

      Comment


        #4
        I just posted that I was having a hard time and saw your post. My husband is the one with MS and I so understand your feeling. We are in our 60's and all our friends are camping, traveling, fishing, etc. We are home most of the time, my husband all the time and when they start complaining how depressed they are I want to scream.

        I know that prayer helps me and doing something I like to do. Call your really good friends and tell them you need a "happy hour" and I'll be they would be thrilled to go with you. Most people don't know how to comfort us and tend to stay away. The Bible says, "you have not because you ask not." I know that scripture is prayer related but it can also relate to your friends.

        I try to remember that crying is ok, it's not weak and also that I'm so glad my husband is still with me.

        Take care.
        Husband Dx'd in 2006. Currently on Tysabri, Gabapentin, Ampyra, Baclofen..

        Comment


          #5
          Just joined MSworld, because I was having the same thought, needing support badly and I saw your post, I totally get what you are saying, I too feel like the person I was is dissapearing and all that is left is a caregiver mom.

          I can't relate to any of my friends either, I have nothing to talk about except my son, I am tired of people asking what have you been up to lately, have you/are you going on any trips, what's new and exciting, even my husband and I have nothing other than our son to talk about and we are so busy taking turns helping him that there is not much time for us.

          My son Tony (25) has PPMS which in the last 5 years has taken everything from him, he needs 24hr care, we have 50hrs a week of support workers and the rest is us. I don't want to sound like I'm complaining but I just needed to get that out.

          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

          one day at a time

          Comment


            #6
            My heart goes out to you Cheri and to your husband and son.
            He is so very young to be stricken with ppms.

            I also understand your grief as my husband has had ppms for almost 20 years now. The wonderful retirement we thought we would have is now a world where we have lost our privacy due to aides, lost all of our friends, and even family has disappeared and do not want to help. It's like we are dead to everyone except ourselves.

            As for our relationship (mine and husband) -- well, that is no longer either. But I have vowed to be there until the end, although I often feel I'll go first.

            You are in my prayers.

            Comment


              #7
              Thank you,
              one day at a time

              Comment


                #8
                That is a big challenge, dealing with a loved one who has the disease.

                What your spouse with MS goes through is horrific. I do have to say, the spouse suffers as well. Badly.

                There has been a death in my family. My wife is very alive, but she is no longer the intellectually curious, quietly ambitious woman that I married nearly 11 years ago. Our hopes, my hopes, my professional aspirations, my ability to continue to professionally develop (with my partner as my help-meet) appear to be DEAD. I must be honest, I am having a very hard time dealing with that.

                We have two small children, and the overwhelming bulk of the responsibility of raising them now falls upon me. Please understand: I am not complaining about my children and about marriage in general, I distinctly remember my vows and understand what I signed up for. What I lament is the death of the partner aspect of our marriage. It no longer exists, and I am tired.

                I love my wife, but I am miserable. She tells me, constantly, that I am the best thing that has ever happened to her and that she is very blessed. I really wish I could say the same.

                My wife was officially diagnosed in April 2012, but in hindsight, she was presenting symptoms possibly as far back as 2006. I have been iceskating uphill since that time. I am exhausted. I do attend our local quarterly MS caregiver meetings, but I have been the only male at those meetings. I am also getting professional help, but it is a work in progress. I have battled challenges with my own high blood pressure and Type II diabetes in that time. I sometimes fear that my own health is failing, because I am cracking under the strain of carrying the load.

                I often have heard the stories of the poor people dealing with this terrible disease and their significant others could not take it and left. Sensibly and naturally, people of this board will side with the patient and not look kindly to the spouse who leaves. I understand that. That said, I now understand what the pressures are, and I am feeling them.

                Comment


                  #9
                  mrhick01:

                  So, I have MS (survivable so far, at least), and I have a spouse that has taken on the burden of dealing with me.

                  I just want to say that I hear you 100%. It is a burden on the spouse. For better or for worse, its a major negative.

                  However, I would encourage you to get help, if financially viable. Child care, professional assistance, whatever. There are a lot of things you can take off your list with helpers.

                  I know it won't solve the major problem, but perhaps it will make things more viable and manageable.
                  Started Tysabri October 2006

                  Comment


                    #10
                    Originally posted by webmonarch View Post
                    mrhick01:

                    So, I have MS (survivable so far, at least), and I have a spouse that has taken on the burden of dealing with me.

                    I just want to say that I hear you 100%. It is a burden on the spouse. For better or for worse, its a major negative.

                    However, I would encourage you to get help, if financially viable. Child care, professional assistance, whatever. There are a lot of things you can take off your list with helpers.

                    I know it won't solve the major problem, but perhaps it will make things more viable and manageable.
                    Thank you for your response. More power to your and your significant other on your struggle.

                    Being able to have a cleaning service come through once every two weeks and taking our laundry to a service that washes and folds (with another one that irons) helps immensely. That has helped keep things together. However, it is not cheap, and our resources are limited.

                    I am going to also check out some of the national caregiver websites, and see if we have respite care assistance where I live (Louisville, KY).

                    My wife didn't ask for this disease. It's not her fault. I wish this wasn't so, but it is. I feel guilty for having these negative feelings, something thinking about an exit strategy. I do not want my wife or children in poverty. After all she has gone through and will go through, she does not need or deserve abandonment. However, I do not want to kill myself trying to maintain in the midst of all of this.

                    I also have a mom in long-term nursing care because she was paralyzed with transverse myelitis around the same time as my wife's diagnosis. Seeking to manage all of these affairs...the pressure is immense. If I can help it, I do not want my young children orphaned.

                    Comment


                      #11
                      I have MS as well and my husband is my biggest supporter; I can relate so much to the issues you are describing. How are your kids holding up? I came across the crowd funding website causes4kids.com and was wondering if that organization could provide some support to your family. They focus on after school and extracurricular activities and are trying to provide a means for kids to pursue their interests even when the cost of doing so surpasses the expendable income in the household. Check it out!

                      Comment


                        #12
                        Originally posted by NettiP View Post
                        I have MS as well and my husband is my biggest supporter; I can relate so much to the issues you are describing. How are your kids holding up? I came across the crowd funding website causes4kids.com and was wondering if that organization could provide some support to your family. They focus on after school and extracurricular activities and are trying to provide a means for kids to pursue their interests even when the cost of doing so surpasses the expendable income in the household. Check it out!
                        I wish your family the very best in your struggle.

                        Also, thank you much for your link. I will check it out.

                        So far, the kids are in good shape. They absolutely adore, and both the 7-year old and the 2-year old think I'm the greatest thing since sliced bread. They depend for nearly everything. If there is something that they need around the house or want to do, they come to me, and not Mom...because I am the parent that is going to get. it. done.

                        Again, I understand why, but the accumulation of job, supplementary education and training to continuously improve my skills, work-at-home and chores are piling up.

                        One example: we cannot regularly get our children (particularly our first-grade daughter) into bed by or before 9 pm. If there is an instance where I have to work late (which is sometimes as much as three times or so a week), leaving my wife to feed the kids and get them in bed on time...(sigh) it doesn't work, and my wife can no longer do it. Her MS seems to have broken her internal clock...sometimes she will not come/go to bed until 4, 5 in the morning and she will sleep throughout the day (and perhaps the entire day if left to her own devices). These habits do violence to creating an environment where you can put the children to bed in a timely fashion.

                        That is just one of the numerous small and not-so-small things that make this so hard. I am striving to maintain and not lose my job while in the midst of being physically and mentally burned out. Even with a good night's sleep, it's hard to get up in the mornings and focus and function.

                        Forgive my steady rant. These are just some of the things I have to get off my chest and share...just to stay sane.

                        Comment


                          #13
                          A day at a time is very difficult since the world goes on.
                          MS stinks for anyone who has symptoms and the ones that they live with.
                          It is difficult because everything changes,everyday, unless it's the progressive form.
                          If only the people that should care and don't (for whatever reason) would mind their own business instead of making it harder for the patient and the caregiver.(I hate that word.)
                          Do whatever you can for yourself, if possible.
                          HAVE A GOOD ONE

                          Comment


                            #14
                            MS sucks!

                            I have just been sitting here reading blogs from tired loved ones and spouses. I have MS. I am in a wheelchair. Nothing lasts for very long before something new comes along. I am a lot of work. I don't mean to be. I don't want to be but I am. I know my spouse is tired, desperate. I know it's MS doing it to him and not me but I feel awful. He can and does take breaks. He lives his life. And still I am a horrible burden. MS is winning and I can no longer take care of myself. I need him so totally now. That need is crushing him. MS sucks!!!

                            Comment


                              #15
                              how to get help

                              My husband has ms at the young age of 30, we have 3 young children, I run my own business. I work full time, do all of the household chores, go to all doctors appts with him, and manage all of the kids activities. I am literally loosing myself. I am trying not to be resentful, but having hard time with that. I know people say to take care of yourself, but when is their enough time? I wouldn't mind some help, but it seems like we don't qualify for anything. My husband can take care of his basic needs, bathing and restroom. Any ideas, we have very little.money. I am feeling very alone. My husband is.so depressed and withdrawn. Need help!!!!!!

                              Comment

                              Working...
                              X