Who Am I? Part 2.

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All of my life I have worried about fitting in. I have craved friends. They have always been immensely important to me. I have chosen friends that have been good for me. I have chosen friends that were not so good for me. I have strived to be different, yet at the same time  “normal”.  While trying to be true to myself. It has at times been ridiculous, immature and wasteful. Just to make sure someone liked me.  It has caused me to treat my parents and family less than they deserved. It has caused me to miss out on things I shouldn’t have. It has caused me to treat myself less than I deserved.

Honestly, this has been a struggle for me for as long as I can remember.

Now, I am morphing and changing. I am not sure who I am anymore. I am someone while I am at work. Then I am someone at home. And someone else completely different with my friends. I don’t recognize this girl that is becoming self conscious in a crowd.  I sit alone in the evening and literally can’t figure out who I am anymore. It is becoming increasingly difficult to be “me” because I am just not sure who “me” is. I am being forced to create a new identity at the age of 43 and I must admit, I feel like I don’t have any control over the outcome. Not having any control over who you are becoming as a person isn’t just a weird feeling, it is a frightening one as well.  One thing that is becoming clear to me: I am terrified I will lose my friends because this seems to be a very common problem for caregivers. Yet surprisingly, I am ok with this possibility, even as I admit being so afraid. What, you may wonder, would cause me to change and grow as a person and suddenly be ok with missing out on the fun and friendships? Funny you should ask….

It is a lonely, long road when you suddenly are “different” from everyone else around you. At first you can pretend that nothing has changed and you can hide the fact that you aren’t the same. But eventually, slowly, it is the elephant in the party room. It raises its ugly head and shouts out to be heard and seen. You can’t ignore the desire to talk about it. You can’t hide the fact that Jim isn’t the same Jim. It can be a hard line not to cross back over once you decide you want to be true to yourself and not follow the pack.  Standing up for something you believe in usually means venturing down an unbeaten path that only those that are willing to accept your changes and endure a different “you”  will last through. For the first time in my life I have found something that actually keeps me from worrying about being invited to a party, if someone doesn’t like me or if I have offended them.

Part of my personality is not only yearning for friendship, but searching for my place in this world. I have always wanted to make a difference. I have dabbled in saving the earth. I have raised money for organizations. I have volunteered with a variety of groups; never quite finding the passionate feeling that would make me give all my time and energy. The one thing that I was willing to lose friends for or choose friends over if I had to has eluded me.

I have found my calling. I have found the thing that gets me excited and drives me to keep focused and pushes me to read more and do more. I have found the one thing that will allow me to keep pushing forward and striving to be part of something much bigger and more important than me or my circle of life. I have found something I believe in with all of my heart, soul and mind.

Alzheimer’s Disease. Finding a cure and changing the course of this disease.

I do not pretend to be an expert. We are in mile one of this marathon. I have a long way to go and it isn’t really something I am looking forward to pushing myself through.

But, I have heard MANY stories. I have cried my own tears and shared tears with others over their same heartbreak and frustrations as mine.

It is a sorority I wasn’t looking or hoping to join. They could come and revoke my membership card and I would be just fine. I don’t want to be part of this . I want to be the  girl that fits in and has friends over  and has no worries in the world. I want to sit around an evening fire and relax and not think or feel so much. Can I even remember what it felt like not to have this secret, twisted knot inside of me the entire time I carry on a conversation? I want to fall asleep with hope that tomorrow will be an even better day and that my life will be something I have a semblance of control over.

I don’t fit in anymore. I am not the same as others. I have a different life and a different purpose. I need to stop kicking and screaming and I need to start DOING!

Yes, it is hard to be different. It is lonely and it is scary to fight this battle.

I am strong. I am a woman that has a mission. If I can complete my mission, I will have helped not only my own children and grandchildren, but I will have made an impact on this world that will make a difference for all the generations to come. My destiny has become clear and it is much bigger than I.

That is worth giving up being one of the crowd and it is worth the lonely nights and lack of parties and trips and dinners and picnics.

I do not travel this road alone, but I travel it side by side with many others that have the same destination. We are just traveling in adjacent cars on the same path.


posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

7 Responses to “Who Am I? Part 2.”

  1. Michelle fox says:

    As I have read the last two days of posting, I fond this post to be especially sad and troubling. You have obviously struggled with your identity many years before Jim’s diagnosis but you did not really have to define it because you were a mother and a wife. You are still a mother and a wife but the path has taken a sharp right and you are struggling with who you are. Each paragraph jumped from one thought to another thought. Yes, you are in a long, winding journey but I wish for you so much that you would stop fighting it. You “said” it in your last words, that you have a purpose now to be an advocate for your children and Alzheimer’s and I believe you really want to do that but I think it is not in your personality makeup from what you have described. What you have already done is far more than many people do and congratulations!!!! A huge step but how about doing what you want to do? Figure it out…Have people over, if they cannot accept Jim for who he is, that is their problem, or is it yours? Are you embarresed by some of his behaviors? So very normal. My wish for you is that you start working on yourself now for your future when Jim is either away from the home or gone. As caretaker of my mom, before I knew what was eventually coming down the road, I went back to school and got my Masters degree in social worl and I work in Hospice and see many Alzheimer’s patients before they pass. It is difficult because I now have my mother in a facility and work and visit her, but I am fulfilled as a person and as a daughter. I am a cheerleader for you and feel every ounce of your pain and anguish in trying to figure this out. You will and don’t be afraid to put yourself first. Someday, sadly, it will be you and the kids and life will go on. Think of you often and May God Bless you daily.

  2. Marsha Carpenter says:

    I have felt the same way for years. I was a Mom of 5 kids and 3 stepchildren & a grandmother & great grandmother. Now, I am mother to my 75 year old husband. Like one of my children when they were small, I change his clothes, give him a bath, cut up his food. I am no longer a wife, friends have gone as if they will somehow “catch it”. My day is consumed with his care. As Michelle says, find your own path. Don’t let the disease diminish you as well. Later Jim will need you more and your children will need to know that Mom is fine (even if you cry for hours after they sleep). Please keep on sharing. It helps all of us. Is that perhaps your purpose? Were I your age I would think about a book. God bless you and give you strength.

  3. Amy Denman says:

    Hi, Karen,

    You are not alone. I think many of us at this age are trying to find out who we are irrespective of our roles as wives and moms, caregivers and professionals, etc.. We are all looking around and wondering if this is all there is – and what happens “when”. When the kids leave home – when the husband retires – when I retire – who am I without all of that going on around me? What have I done with my life? Have I made a difference? Even if Jim was well you may have been asking all of those questions.

    My Dad died a few weeks short of my 10th birthday. Believe me, when you say you feel like you don’t fit in with your friends, I completely understand that feeling. I spent most of my adolescence feeling like I didn’t fit in. I felt older than my peers and like I had gotten a sneak peek at something they never contemplated – death. It hung over me and influenced my decisions as I grew up as I doubt it ever did for any of my peers. I felt lonely and ‘different’ and yes, I felt like the kid in the corner everyone pitied and talked about – but never talked to. Aside from my best friend, and maybe one or two others, none of my classmates ever asked me how I felt – they just ignored it or forgot about it. I suspect some of that is going on with you as well…?

    If Frances came to you and said her friends were giving her a hard time, or that they didn’t want to be friends with her “unless” she did or did not do something, or they were shunning her and leaving her out – what would you say to her? Would you tell her that friends like that aren’t really friends anyway, and that she is better off without them? That she should cling to the friends who treat her well and truly care about her? I think you would. I think you would want her to hold her head up and look out for the people who really matter. May I offer to you that if you are worried you will lose some friends through this process that they may not be your true friends anyway? Your true friends will keep inviting you, will keep encouraging and supporting you and will love you through your changes. I think you probably have lots of them as you are a fantastic person.

    I personally think that we are all growing up; whether we are 10 or 20, 40 or 70 – we are all still growing up. The journey doesn’t end until the end. Why should we feel like we should have it all figured out by now? We are constantly growing and changing, and hopefully learning and adapting along with it. Hang in there. We love you and Jim and the kids – all the way from Texas and back.

    • Karen says:

      Hi Amy,
      Wow. I had no idea that your Dad passed away when you were so young. I don’t remember us having that conversation. Thank you for your insight. I definitely think Frankie feels that things are different. She made a comment a few months ago on just wanting our family to be the same as everyone else and I think that said a lot. Thanks for writing and for helping me out. You are always so good to me. Thank you. Wish you guys were closer again.
      Hope all is well your way. I am in the midst of packing up for an overnight trip tomorrow and I wanted to reply back to you before too much time had lapsed. Thanks so much!!
      Love right back at ya!

  4. Hey come jump in my van, we can drive this road some together on occasion. It sure isn’t an easy one, and yes it can be very lonely at times.
    I think I am just a tad ahead of you on this road, I am constantly amazed at the goodness I see in others as they reach out to our family with such kindness and care. I have had the attitude that we keep on, keeping on. We have gone to ALL of the kids events this year, we sit with friends, chat during dinners and at games and just keep things “normal.” Yes I know it is a NEW and different “normal” but I have found that as I keep conversations focused on normal mom/wife things and not always dominated by my woes of life, things feel somewhat normal for our friends, and that helps me and the kids. It’s hard to adapt always ( I have started carrying a special business size card with me that I hand to others explaining why I am in a women’s restroom stall with my husband, I cut his food in public and help push in his chair to sit down and put on a take of his coat for him, I help him get seated in the bleachers at games etc) But we do it with a smile and a sense of humor and keep on, keeping on……:) Really come hop in our van anytime on this road my friend, you do not need to driving it alone! Thanks for sharing your heart! True friends will see you through this!

  5. Lee Ann says:

    I am reminded of an elderly woman where I used to work, whose husband was 95 years old (she was old too) and he had a feeding tube in. He decided that he’d rather die of pneumonia than never eat food again. So he got papers filled out, giving him the right to know what eventually would happen if he ate meals. And he enjoyed his meals, every one of them. But his wife would sit and be very anxious while he ate, knowing that he could aspirate some and get pneumonia. I found her sitting in their room, crying, and she was saying, “I know that he’s enjoying his life more, but when you get married to that strong, smart man, you never really realize that it will end. The end came too soon.” So we never know how things are going to change. We get married, expecting to live happily until we are 100 years old, healthy until the end. Sometimes we’re lucky and sometimes we are not. You got the life you didn’t plan on. You, like everybody, expected certain things. And its difficult to adapt and change to the new reality. But I think your posting to this blog helps you more than you realize. You’re a strong person. You will get through this.

    • Karen says:

      Lee Ann, Thank you for sharing this story and your words. So true. This brought tears to my eyes. Thank you.

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