Used to be Mine

While listening to this song by Sara Bareilles (I am a musical emotional hostage on many occasions) I realized something: I am scared. Really scared.
Most people who know me would never think of me as a person afraid of anything (except snakes): I am strong. I am outspoken. I am opinionated, I am tough and emotionless. But the reality is:  I am not. Any of these things. I am alone in a big world that can be scary. Sometimes a little terrifying. I found a man who saw me for me and loved me anyway. I found a man songs are recorded about and love stories are written about. He loved me with all of my faults, my weaknesses and my inconsistencies. Despite everything, he loved me. And he still does. And it hurts. It hurts to have had that kind of love, the kind that some never have, that people long for and dream of, and to watch it slip away and realize that it will never be again….it is not just scary, it is crushing. There is nothing I can do to save him therefore saving us. I can’t apologize for something done. I can’t take back something said. There is no “fixing” this. There is no making up or forgiving and working it out.  I am not an easy person to love. I don’t just go along with things. I question. I wonder. I dream. I am passionate to the point of annoyance. And Jim saw this in me and liked it. He liked me and wanted me. He chose me. I chose him. And something else bigger than both of us chose him to leave first. How? How could anyone think he should leave first? He was such a great Dad. And a great husband. And a great man. On all accounts. Jim gave. Jim was good. Jim was kind.

Alzheimer's Disease, frustrations,

Jim and I at the Grand Illumination in Colonial Williamsburg, Dec. 2011.

Jim made this world a better place because he was a hard worker, a giving man, a forgiving person and an accepting human. Just what we all need. And yet he is being put through an unfathomable demise. How cruel. How unfair. How awful for everyone involved.
I no longer know who I am. I question each conversation I have. Sometimes I can’t even recall what I said or who I said it to. I am not just lost; I am not even searching. I used to think I was…searching for something I won’t find and not a clue what I am looking for. I am searching for the man who loved me, who made me ok with me. I know I am supposed to be a woman who doesn’t need a man to love herself or who needs a man for anything and I don’t….but the truth is…Jim completed me. He made me better. He made me like myself. He made me a better mom, a better friend, employee, citizen. A better everything. And without him, who am I? Am I still deserving? Am I still likable? Am I still a good person? He was head and shoulders above me in so many categories and without his companionship and guidance I am on shaky ground. How can I live up to his standards without him showing me the way? His strength and unwavering belief in me is a lot to live up to.The trust he has shown me not only throughout our marriage, but especially as he has succumbed to this disease…unquestionable trust. It is almost suffocating. The decisions I have made on his behalf and his lack of argument are to be commended and should be held in the highest regard. Even while this disease ravages his brain, he trusts me to always do what is in his best interest. Amazingly so.  He brought out the best in me and it is now up to me to find my own strength, my own North Star, my inner GPS system. No one to remind me when I fail that I will be ok and that I will some day succeed. That I am capable. That I am beautiful despite the wrinkles and gray hair. That I am still interesting and wanted.
Without getting angry, without making excuses, without Jim…I move forward. Not at the pace I would normally. Not with the same spirit and drive. Without my partner…without my biggest fan…without the comfort of knowing no matter what mess I have made, no matter how terribly I have failed, I will have someone who still thinks I am awesome and competent. Someone who will wrap his arms around me and make the world disappear………no more. I am alone with my own failings and my trials and tribulations. I can only reach deep to a place I have never thought I could or would have to go and forge ahead. Without Jim’s inspiration and acceptance. Without his smile. Without his wisdom. Without all of the many things he brought to us all through his quiet example. I love you Jim and I miss you so very much. Thank you for being you and allowing me to be your wife for 18 years.

Brad, Jim and Frances. Nov 2015.

Brad, Jim and Frances. Nov 2015.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)

11 Responses to “Used to be Mine”

  1. Chris says:

    All will still be fine. It will not be the same. It will be different. He brought out the best in you. It was always there’s, but he help shine a light on the best of you when you forgot. So, you’ll need to remember for him. You will do your best and in the end it will be enough but seem like it’s not enough. He trusts you. It’s time for you to trust yourself. All will be fine. Not perfect. Not as we had planned, but in the end it will be fine. And that is good enough. Keep moving forward and pausing to rest and remember. That’s okay too.

  2. Sue Wood says:

    Your posts move me to tears each and every time. To lose someone when they are not gone, is the hardest loss to go through. Yes, you are you, the girl Jim fell in love with, you & the children are the living evidence of Jim’s life. Your blog is further evidence of the terrible times and the good ones too. I can feel your pain, we all can. Some of us will or have gone through what you are going through & yours and Jim’s light will guide us through that long desperate tunnel & like you, we will emerge the other end a wiser, battered by the winds but a stronger person. This you will do, but for the dark days when you doubt yourself, love and extra big hugs from this community you and Jim have created. A legacy of love.

  3. Marchelle says:

    Karen as I read your post it reminds me of the love God has for us. You described 2 Cor 13 in living color. God loves you so much and the love and life you have with your sweet Jim is a great testimony for the world❤️? Keep your head up and you and th family are continuous in my prayers????????

  4. You have put my words in my heart for my husband down on paper. I lost my husband of 43 years of marriage to Alzheimers this July. He was only 66 years old and fought this horrific disease for almost 7 years. He has taken a part of me with him, but at the same time he is a part of me forever. Life does go on, but in a very different way, because the part that completed me is gone. I will have to forge forward trying to find me again in a different world. Thank you for posting this blog, because it is hard to tell others what is missing. With Alzheimer will live through two deaths, one is the lost of our loved ones mind, then we get to go through the death of their bodies. This road has been way to hard on our souls. Storms of life can either make us stronger or we will wither and die in the shadow of the storm. Keep on living life and carry their legacy with you in every step.

  5. linda stewart says:

    he is part you. Assimilated. No way you could let him down. He has made everyone a better person.

  6. My dad died when I was 8, my mother and I never had a mother-daughter connection but Joe filled up the holes of feeling abandoned as a child. Now after Joe passed all that is left are memories, and scars from loving deeply. Alzheimer’s teaches us what true love is. We lose our husbands one tangle at a time and as the decline speeds up we love deeper. In a crazy way I am grateful because Alzheimer’s led me to an ultimate Love. Jan. 31, 2016 will be 1 year when God took Joe home. Watching Joe decline for over 11 years I view death as a Gift. Karen cry, the pain now is the love and happiness you and Jim shared. Love you and feel your pain.

  7. Karen these lyrics describes the way you, Jim, Joe and I loved. All The Way
    When somebody loves you, It’s no good unless he loves all the way. Happy to be near you when you need someone to cheer you all the way
    Taller than the tallest tree is that’s how it’s got to feel. Deeper than the deep blue sea is, that’s how deep it goes if it’s real.
    When somebody needs you it’s no good unless he needs all the way.
    Through the good and lean years, and all the in between years come what may.
    Who knows where the road will lead us only a fool would say, but if you’ll let me love you it’s for sure I’m gonna love you all the way
    All the way.

  8. Paula Ormes says:

    Thank you for sharing. I feel like you are putting my exact feelings on paper.

  9. JOAN says:

    Karen I too am scared.At first when my husband of 32 years was diagnosed I felt like a hand was squeezing my heart.Gradually I have learned to accept and go on but at the back of my mind I wonder how I will cope at the end.
    I have many happy,sweet memories and he becomes more precious.We must stay strong in the face of this terrible disease!

  10. Monica says:

    Wow. In my perspective, you are already showing you capable and beautiful you are. You ARE succeeding by sharing your deepest thoughts and emotions which is so brave and even healing for both you and for all the people who can relate and are in the same situation. And you might consider all the ways the true Jim you knew is still with you. I bet you hear a voice, what would Jim tell me in this situation? It is not the same as having him by your side in the present and grieving for that is so understandable. But maybe a piece of you can see the parts that Jim gave you and the parts you created together that no disease can take away. God’s peace to you and your family.

  11. Nicel says:

    We love Sara Bareilles and were just listening to this and talking about it. If you ever are in the Virginia Beach area and want to cruise in and get your hair done, we would love to have you!

    Rest in peace Jim.

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