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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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  • By alefever02

    I have to thank you for the bluntness of this post. I lost my mom to complications of MS last February. I finally did a google search for the loss of someone with MS and landed on this post. I have been having an extremely hard time ever since, because I will forever feel that until you have been in this situation you will truly never understand. That’s also why I find it extremely hard to talk about with friends. My mom was my best friend and always a warrior when it came to this disease. But, the last two years still feel like a blur. As a caregiver to anyone with this disease especially when it’s progressive everything happens so fast and unfortunately you still have a lot going on outside of this illness. I don’t think I ever fully gave myself time to grieve as sometimes I felt guilty if I went a day without thinking of her. The other part that is so hard is that the hardships become a new normal, and you can sometimes feel guilty if you got frustrated. For me… the last weekend before she got diagnosed with a pulmonary embolism, I came home to take her to a hair appointment… no matter how miserable she felt, she always needed her hair done and I loved taking her. But her salon got moved to a different shopping center. Busy area, minimal handicapped parking and we had the dreaded urine bag to deal with. I was never mad at her for any of it. But I remember getting extremely mad at the situation as I got her into her chair and sprinted what felt like 3 miles to get her to her appointment. Even though I was frustrated I never knew this was the last weekend we would really spend together. I will forever feel guilty for getting so frustrated that day. That last day didn’t define anything and we had a fun weekend after but I simply can’t get the scenario out of my head almost 18 mos later. I continue to play the could of, should’ve, would’ve game … and it’s been extremely emotionally draining. I know I’ve been rambling but I’m hoping sharing my story with people I feel truly understand can get me out of this funk/mindset I can’t get out of. I loved and continue to love and miss her but know at some point I need to get to a better headspace.

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  • By Kim Dolce Moderator

    @alefever02, thank you for your honesty, you are deeply understood. I have MS and was caregiver to my mother for only five weeks before she was diagnosed with terminal lung cancer, but I carry a great deal of guilt/shame about a few things years after her death. I carry guilt about some other similar events as well.

    One thing I’ve learned in general is that the feelings that accompany memories will surface from time to time whenever something triggers them, and it’s okay. I’ve stopped believing that we get over the pain of the past forever and keep looking forward.I embrace all my feelings and memories, welcoming them with open arms when they come back and saying a warm farewell when they leave again, reassuring them that I’ll always be here for them when they’re hurting and need some love and validation. I think of them now as my children, different in their temperament but equally important and cherished.

    The hardest thing of all, though, is to forgive myself. I’m still working on that. –Warmly, Kim, moderator

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  • By Donna Steigleder Moderator

    Survivor guilt is prevalent for a caregiver after the loss of the one receiving care. Many times the caregiver has focused so much attention on the one needing care for years that they no longer have a separate life of their own. Once the one needing care is no longer there, they are at a loss as to how to move forward. Depression may move in for a while when that occurs as the caregiver tries to find a new role in life.

    It’s essential to recognize the signs if that begins to happen as a separate stage from grief from loss. Yes, you miss the person’s presence, but it’s more than that, you have also lost your purpose in life. Often counseling will help make that transition take place a little smoother as the one who was a caregiver now becomes simply a person alone with many hours to fill up that they never had to fill before. Volunteer work helps, being with friends and family does too. But finding a new purpose is a primary focus during this time. Donna Steigleder Moderator

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