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Close up of a closed eye with a musical note inside a tear.

Caregiver Perspective: Unexpected Sadness

I got hit by feelings of sadness unexpectedly today. Keeping my self out of my husband’s sight at all times, I had to work really hard to hide the fact I was very close to crying. Usually, I guard my emotions well, and rarely break down. However, I have one weakness that I can’t seem to guard against: music.

Fell in love with his singing

Lynn had the most beautiful tenor voice you would ever want to hear before his MS progressed this far. It was his singing that sealed the deal for me in deciding to take the chance on marrying him and bringing our two families together. I had been burned badly in my first marriage and was very hesitant to remarry. Lynn was just as reluctant as I was as far as setting a date, but he was very romantic. Me on the other hand – I wouldn’t let my guard down in order to give him my heart either.

Afraid of being hurt a second time, I kept up an emotional barrier until he wrote a song that he sang to me as part of his marriage proposal. I love his voice and to hear him sing as he plays his guitar or drums just melts my heart.

Music was a significant part of life prior to MS

One of the ways we bonded as a couple was to participate in church activities together. We both were part of the adult choir, handbells, dinner theater, and Sunday school. Plus, Lynn played guitar and drums for the praise band while I helped with the drama team. All of these activities gradually stopped as his MS became worse.

One of his last solo’s at church was him singing, “I Can Only Imagine.” It was the last time he accompanied himself during a performance. Everyone at church knew he was struggling with MS and had already given up his role in the praise band. As he finished his solo, he received a standing ovation, and several members were openly crying. Many still talk about how poignant his last performance was both from the standpoint of how well he performed and the appropriateness of the song’s message.

MS losses

Lynn’s voice represents to me so much of who he is; it illustrates his vibrant personality and vibrancy. He used to be the lead singer in several bands in his twenties, and today, as I was giving him his morning care, we listened to several ‘70s songs he used to sing with the band. Suddenly, it hit me in the gut. I could hear him singing those songs, his voice so strong and energetic. He still sings regularly to exercise his diaphragm, but he doesn’t have the strength to bellow out a strong vocal. The loss of that ability just shot through me, and I wanted to sit down and have a good cry.

Blinking back the tears

Lynn’s back was to me, so he could not see that I had teared up. I kept blinking until my eyes cleared. He never knew I had become upset. It took me a while before the feelings left, so I had to keep chattering about nonsense for a while to keep the conversation on a light topic. The melancholy is still there to some degree.

Grieving the loss

I’ve accepted the fact that he has lost most of what he can do, and I know Lynn can still sing though not as strong as he once did, but I still grieve the loss of what once was and the memories of what that voice meant to me. It’s a symbol for me of all the losses we have had to accept…and it hurts.

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Comments

  • Irishmar8
    6 months ago

    I have the ms and I grieve loss always for my husband my adult daughters and my young grandkids and myself. I was the Rock! I was a fairly good artist too. I was life of party with gift of gab. Not anymore

  • ornelasjer
    1 week ago

    Sorry to hear that I know how you feel life of the party not any more sucks how life is everything you love doing or use to do and the next get taken away like nothing people take a lot of things for granted i pray one day I will be able to walk again without anything I will never ever take it for granted!

  • Donna Steigleder moderator author
    6 months ago

    Irishmar8, You are so right. The loss is not just to the one with MS; it’s to the entire family and everyone who knows the person. They all suffer.

  • asapcynthia
    6 months ago

    I’ve has ms for 25 years. I’ve been married 33. Unfortunately for me, I have allowed him the luxury to pursue things that I can’t do any more. Now he has a life outside of us. He golfs, hunts, fishes with his buddies and pretty much does whatever he wants while I sit on the dock and wave good bye. I didn’t want to be his burden. I’m glad he’s happy. But I’m afraid it’s gone on too long to reel him back in. Liking the fishing metaphors a little too much, don’t you think? Personally I believe he would resent me if I got too needy. He wouldn’t leave, there still is love. But I don’t believe he would give me what I need, I believe he would give me what he thinks I need. I asked for a sheet, he gave me a blanket. He’s the same guy I married, but I guess I’m also a realist. You can’t expect someone to give what they don’t have. I hope that others learn from my mistake. Don’t be so stubborn and self sufficient and insistent as I am. Take the help when it’s offered. Otherwise you’ll be sitting on the dock next to me.

  • Donna Steigleder moderator author
    6 months ago

    When Lynn and I first got married, we had the same situation-totally separate interests. Had we continued in that direction we would not still be married. His limitations forced us in many ways to begin to pursue similar forms of entertainment as a compromise so that neither of us had to suffer boredom all the time. We went to counseling for help to have a third party help us talk. I can’t blame MS for our issues. I can only blame our own selfish natures. MS is not always the problem in a relationship. I would recommend having an honest talk with him about how you’re feeling about your relationship.

  • asapcynthia
    6 months ago

    You’re right about the counseling. I have been trying to figure out an online therapist because I really don’t have anyone to talk to. Friends and family may listen, but I don’t think anybody that close to us needs to know what should be confidential in a marriage. I know there are two sides to every story, I don’t mean to throw him under the bus, but I guess all I want is somebody to tell me I’m not nuts.

  • Donna Steigleder moderator author
    6 months ago

    I’m so sorry. I do think that the stress of the relationship, however, can impact your MS. If you can seek counseling, even by phone or internet, it might help you to have someone to talk with about your needs since he’s not there for you. Getting out on your own might be difficult but helplines can be very useful as support lines and just talking to someone can take a load of pressure off and make a difference when you have no one to share your feelings.

  • asapcynthia
    6 months ago

    I have asked him to go because life and ms have altered the boundaries of our relationship, but his attitude is that he’s not going anywhere so it would be a waste of time. The reality is he doesn’t want to change. If we were to voice our feelings it would mean you would have do something about them, wouldn’t you? He enjoys being recognized as saint for caring for his poor, ill, wife. I’ve told him I could replace him with a cleaning lady and Uber. I already have the cleaning lady.

  • ornelasjer
    6 months ago

    So sorry that has happened to y’all I’m dealing with my own struggles found out 7 months ago that I have a severe case of ms lost everything my job use to work out everyday can’t even do that I’m only 32 barley can get around I try and be ok with everything but I just don’t now how this is all new to me pluse I have a 14 year old son moved in with my mom thank god she has done so much for me and my son lots of days I feel worthless so all I can say y’all are not alone nice to know there are others out there like me!

  • Donna Steigleder moderator author
    6 months ago

    Ornelasjer, It takes a lot to get used to all the changes and if you just got diagnosed you are still in the shock and adjustment phase and asking a lot of “what if” questions. I’m glad your Mom is there to support you and that you found our site to use as a support group as well. Lynn and I are excellent; I just have short periods of sadness but lots of times of feeling blessed as well. We have a great life together most of the time. Hopefully soon, you’ll find the find combination of treatments to give you strength and support to feel back in control again. If that worthless feeling doesn’t go away soon, please mention it to your doctor. One of the symptoms of MS is depression. There’s a treatment for depression; you may want to consider. The depression comes from chemical changes from the MS; not from personal weakness or failing so don’t think you’re weak if you need something. It’s just a thing a lot of people need at times. Hang in there and thanks for your words of encouragement.

  • Donna Steigleder moderator author
    1 week ago

    @ornelasjer I’m so glad to hear from you and encouraged that you’re doing okay at the moment. Hang in there. It’s a long journey to making change. I hope things keep getting better for you and I really appreciate your getting back to let me know how you’re doing.

    Donna Steigleder Moderator author multiplesclerosis.net

  • ornelasjer
    1 week ago

    Thank you took me awhile to get back to you message thank you I needed that encouragement thinks are ok right know I am getting treatment right know every month tysabri an infusion I feel hopeful but days seem longer!

  • jim
    6 months ago

    Donna, the strength and depth of your relationship is so evident in your post.

    God bless you both.

  • Donna Steigleder moderator author
    6 months ago

    Thank you, Jim

  • gmc
    6 months ago

    Oh Donna! I have MS. I don’t know your Lynn, but I don’t think I’d hide my tears from him. It would give him a chance to comfort you with words or a hug or some how show or tell you that he still loves you. I wouldn’t want my husband to hide his emotions from me; it comforts me that he feels so strongly because of his love for me. I realize your relationship may be totally different and you should handle your emotions however you think is best. I will be in prayer for both of you.

  • Donna Steigleder moderator author
    6 months ago

    Thank you, GMC.
    I hide my emotions from Lynn mainly because he’s such a softy. He feels so bad that he puts me through so much. He feels guilty that I have such a heavy burden and that the cannot help. He tries to do whatever he can and he comforts me often if I get upset. We’re very close but I try not to unnecessarily upset up if it’s just a simple emotional response like this rather than something that truly has me upset.

  • Tanner
    6 months ago

    As someone who has MS, I fully recognize it is harder on my girlfriend than it is on me. She seems to notice my decline more acutely and, since she also is my backup, her caretaker duties are increasing.
    But it’s important to remember, despite the tremors, despite cognitive issues, despite the crippling fatigue, despite the pain, despite the incoordindination, despite the tripping and falls, I am still basically the same person she fell in love with. We try to focus on all that we still have, which is most of us. As long as I can still laugh and understand, I’m still in here somewhere. Don’t cry for me, just find me.
    There are many good caretaker support groups. Ask the neurologist or call your local hospital. As caretakers, you need to care for yourselves just as much. And also, thank you.

  • Irishmar8
    6 months ago

    I often feel that I’m handling my ms better than my husband of 40 years. I hate being the “Beast of Burden”, but I am more an armadillo type, husband is easier stressed, and has his own health problems. One kidney due to kidney cancer. I try to put on brave face. I cry alone sometimes then I feel better. Stay s my motto is no matter how bad you think you have it, it can always be worse.

  • Donna Steigleder moderator author
    6 months ago

    Thank you, Tanner, for that encouragement. Most of the time, Lynn and I can share everything, even emotional pain. We are closer now than we have ever been, but there are times that I can’t add to his burden what is mine alone and a support group would be useful. Unfortunately, I live in an area where the closest one is three hours away and in the county where I live there are no home health respite resources at all. Within my family, I have several members with chronic health problems so we all cover for each other so the caregivers can take care of necessary trips to stores or appointments, but there is no additional time available for much else. Sometimes life is what it is, and we are blessed to have a lot of love in our family and laughter to look at our circumstances plus lots of grandkids to bring us joy. So we’re okay, but at times I can’t help but have a few tears too. Thanks for reaching out to offer your support. I really appreciate it and keep supporting your girlfriend every day as well. She sounds great. Donna

  • dhortho1
    6 months ago

    Hi Donna,
    I’m very sorry for the losses MS has brought to you and Lynn. I don’t have MS but my mother had ALS and a female friend from my past I have learned does. I have come here to learn more about this illness. My friend and I were catching up on our lives when she suddenly stopped communicating leaving me bewildered and hurt. Don’t know if it was MS or something else but I’m certain MS played a role.
    You and others on here write so well about your journey with this disease and I’ve learned so much; although, not sure what I can do with that knowledge, now.
    Try to have a Happy Valentines Day.

    David

  • Donna Steigleder moderator author
    6 months ago

    Whatever your reason for visiting David, glad you’re here and thanks for the kind word. For your friend that stopped communicating: (a hint in dealing with women) seek her out and ask if you can do anything for her. Think of something that she has shared with you that is special that you can take t her as an ice breaker and see if that opens the door to talking again. Good luck. Donna Steigleder, Moderator

  • PattiandBob
    6 months ago

    It seems like every year we/he loses something else. The losses are hard to take .. Bob was such a vibrant, strong, energetic man. Reduced to a wheelchair was hard enough .. but now it is affecting his arms and hands too .. making it impossible to do anything that requires reaching out or grasping. He can no longer even play Bingo at our senior center as he cannot reach to slide the covers over his cards 🙁 and more often than not I have to cut his food up for him to eat. This upsets him (frustrates is more the word) .. it makes us both sad in many ways .. but I too avoid crying in front of him. It makes him feel SO BAD when I get teary .. We have learned to accept, but we do not like it.

  • Donna Steigleder moderator author
    6 months ago

    Thanks, Patti. I try to be aware at all times that he wants to still be my protector as my husband and not let him see the pain I feel by watching him deteriorate. Occasionally, he sees me and provides comfort for other disappoints and that is okay but not for this, it only leads to his feeling guilty that he’s causing me pain. This sadness has to be hidden and cried alone in the car or shower. Know what I mean? I’m sure you do. Donna Steigleder.

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