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For Caregivers, a Sixth Stage of Grief

  • By teddy s.

    I’m sure we are all aware of the five stages of grief that we must endure when dealing with the loss of a loved one: Denial, Anger, Bargaining, Depression, and Acceptance. For myself, I really have only experienced one: Acceptance. I knew what I had in store for me when I committed myself to Tracey. I knew that we were fighting a losing battle, and that the best I could do was provide for her and just try to enjoy our ever dwindling time together. As MS entrenched itself, and the battle lines were drawn, I was fully aware that it was just a matter of time. I accepted this inevitability, and was as prepared as I could be when the end finally came.

    As I continue with the mourning process, however, I have come upon a sixth stage, which may be unique to caregivers:

    Guilt.

    About two weeks after Tracey’s passing, I finally had a good night’s sleep. I went to work the next day full of energy, and had what was probably the most productive day I have ever had. As I made my commute home, I still felt terrific, AS IF A TREMENDOUS WEIGHT HAD BEEN LIFTED OFF OF MY SHOULDERS.

    I think you know where I’m going here.

    By the time I got home that evening, the guilt started setting in. How could I possibly feel relieved, when the love of my life and the best thing that ever happened to me was gone? I was in a place I had never been before. Fortunately, some of those in my inner circle had been through similar situations. Though they don’t like to talk about it, they had all experienced the same thing.

    What I’ve learned is that when your loved one passes, you have two choices. Here, I will reference a line from one of my favorite movies: “Get busy living, or get busy dying.” Try to establish a new normal, and get on with your life. There still might be some great things in store for you.

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  • By Erin Rush Moderator

    Thank you so much for sharing, teddy s. Your posts throughout your journey with Tracey have been touching, gut-wrenchingly honest, wry, and downright beautiful. Don’t quit sharing with the MultipleSclerosis.net community! Your voice is an eloquent, refreshing addition to our community. I hope writing here is a bit cathartic for you as you heal and process what you have been through. Thank you again for sharing. We’re glad to have you here. Best, Erin, MultipleSclerosis.net Team Member.

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  • By teddy s.

    Thanks, Erin

    I do find that posting here is very cathartic, and for that I am grateful. I recently went to visit Tracey’s family and the conversation eventually turned to my feelings of guilt. But they misunderstood. They thought I felt guilty because I thought there was something I could have done to prevent her death. I knew that once MS declares all out war, you can sue for peace, but only on its terms. My guilt came from a feeling of relief that the weight of years of caregiving was over. I have learned that you have to make that feeling pass. I had done all that I could possibly have done. Multiple Sclerosis is not a fair foe. It will ultimately triumph in the end.

    To all caregivers that are in the long, downhill slide: Stay close to your charge. Never pass up the opportunity that awaits you. By being true to your calling, you will experience a level of intimacy that very few will ever feel. For those who are younger, you have experienced something that will elude most of your age. For those of you who are older, you have experienced the ultimate, though there may be still more to come.

    I am hoping for that.

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  • By caregiverX1

    I applaud your courage and determination to have stayed the course. I am caregiver for my husband who is in advance stages. It is becoming more apparent that he will lose the battle due to respiratory issues. Aspiration pneumonia. I plan to stay the course as well. Reading your entries remind me that others have gone before me as caregivers for this disease that sucks. Thank you for sharing your thoughts.

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