I don’t wanna

Brad, Frances and me. May 2013.

Brad, Frances and me. May 2013.

I am tired of this shitty, sad life. And we are just in the beginning stages. Nooooo. I don’t want to do this. (Yes, I realize this sounds like a 3 year old. Right now,that is how I feel.)

I sometimes take a few moments to read “our story”. To go back and re- read my entries or read interviews and stories written about us. Damn. Our story is touching, jarring, sad and REAL. Actually, surreal. To live something and then to read about it is just so surreal.

I don’t want to be REAL. I mention “I don’t want to” a lot.  I don’t want to do this. I don’t want to feel so defenseless. I don’t want to speak. I don’t want to cry. I don’t want to yell. I don’t want to hold. I don’t want to watch. I don’t want to be defined by something I have no control over.

How to release yourself from an agony that is worse than prison? At least prison has a definite end date. How to protect someone you care so deeply about from a future of embarrassing moments? Moments they might not even realize are embarrassing?

What do you do to help someone that took so much pride in their dress and demeanor when they are no longer able to look put together on their own?

NO. I don’t want to do this. But I don’t have a choice. I feel trapped. Trapped in a time warp that I have no control over. No control over my own life for how many years to come?  No control over our families’ future or my future. No control over my childrens’ childhood.

I didn’t sign up for this; yet I am forced to partake and to make the best of it. What could be the best of it? I can’t see past the negative connotations at this point. I am hoping one day I can look back and find something positive.

Something positive for my children in watching their father become a person they can’t possibly understand or recognize.

Something positive for me being left alone to navigate mid -life and beyond.

Something positive in wanting to change an outcome that you see coming and falling terribly short.

Will I feel positive about writing this blog, speaking to groups, doing interviews and sharing our story with the world? Will I feel I made a difference in something? to somebody?

How to stay positive when all I want to do is run away and let someone else deal with this huge mess? This huge debacle that I don’t want to define me as a person. My children deserve more than to witness the slow demise of the person that personifies character to them. NO. I don’t want to participate in this unyielding tragedy.

But, I wasn’t given a choice. I wasn’t consulted and given an out. There was no picking what is behind door number 1, 2 or 3.  I had an out several years ago when Jim and I went to marriage counseling. He was driving me crazy. We were arguing a lot. I could have left. He could have left. We stayed.  I realized what he had before the doctors did. I could have bolted then and used the excuse “I didn’t know. I left before he was diagnosed.”  But I did know. Thankfully my parents raised me to take the high road, not the easy road. I am better than that. Being better than that really isn’t all it is cracked up to be in day to day life.

I am lonely. I am scared. I am frustrated. I am tired. I am helpless. I am….. so many things. Yet I can’t figure out that magic fix. That magic carrot dangling in front of me that allows me to figure out what to do to make this easier or better. Maybe there isn’t a carrot. Maybe it is just going to completely suck for the foreseeable future. How do you wake up each day with this thought and put a smile on your face and put your best foot forward?

It is the kids are the closest thing to a carrot I have. They give me the ability to get out of bed each morning and work all day and do it again the next day and the next.  They keep me focused on many things much more important than my own personal issues. They are losing something that can never be replaced. They are witness to their own childhood drama story to tell at neighborhood socials and gatherings with friends and colleagues. How this all plays out will define them as adults. How I help them and manage this situation will determine how their story will be told over cocktails, barbeques and in counseling sessions.

How I handle all of this will define me as a mom, a wife, an advocate; as a person.

No pressure. No pressure at all.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)

13 Responses to “I don’t wanna”

  1. Diane Chadwick says:

    You are so honest and bare your soul for all to read. I feel you pain as you write your blog. My AD story is my mom and right now she is in assisted living with dad but it is still hard on a daily basis….just dealing with life in general. Prayers for you & the family.

  2. Mary says:

    You said it in so many levels. How do we handle this? Chronic sadness has set in and will be with us until the end. But you know Karen, women are emotional, caring, giving and tough! Somehow we will see this to the end. I wonder also how family will view how I did as a caretaker, did I care enough- yes, did I do enough- yes to the best of my ability. Let anyone just try to walk in our shoes. Thanks, Mary

  3. Sharon Huber says:

    …and it does not get easier, but there are times when the rewards of navigating this awful path out weigh the negatives. Kids who step up and share the burden… new friends you would not have met… small accomplishments… As far as being embarrassed, your husband won’t feel the embarrassment and you can choose not to also. Honest, you can. Prayers for you and your family. Sharon Huber

  4. Marti C. says:

    One day, I promise you, you will look back and be happy with yourself for the great job you did. Your feelings are natural and no surprise to anyone who has walked a similar walk before you. I remember being embarrassed by my mom in social situations…you get over it, and you will do the best you can for your family. Can you get someone to help you? Even just an hour a day with strengthen you… I am so sorry anyone has to go thru this, but you have many behind you, praying for you, thinking of you, that you don’t even know. Be truthful always and thank you for taking care of your husband and children the best you can.

  5. Connie Howard says:

    I can’t and I don’t handle it well BUT my God is teaching me to walk with Him in this journey and trust Him for the future. Faith in God is not about myself but others and allowing Him to use me however he pleases. Difficult as it is. New behaviors are daily with my husband. Recently it is taking his pills. Can’t seem to figure how to swallow them. Noticed his pants were wet yesterday. I knew incontinence was coming. Last week Dr. suggested it might be a year before he would be in a memory care facility encouraging us to not have him go to assisted living and keep him home until absolutely necessary because of his age. I so feel your pain and emotions. As your children are your carrot, I know that the end on earth for Glenn means he will be perfect and whole and in Heaven with His Heavenly Father reunited with his dad that died at the young age of 35 from a congenital heart defect when Glenn was only 8 years old. I live in the present purposely looking for joy in the moment with hope for a better future.

  6. M says:

    I don’t want to either… Long lonely road…

  7. Dennis DuBois says:

    The one thing you will gain through this experience will be to never again think “I could never do that!”. I’ve learned, through my experience, that you really don’t know what you are capable of untli you “have to”.!
    You learn to live life one day at a time, and some days, one hour at a time. What your children will learn is what real love looks, and feels like!
    You are not alone!

  8. Sandra W says:

    Ohhhh everything you write feels like you took off my mind……One day at a time!!! God Bless….

  9. Yes my friend IT SUCKS dealing with this disease with kids so young! It sucks to have to deal with losing your hubs, your friend, your confidant…..it’s hard to go it alone! My kids were 13 and 15 when Curt was diagnosed, those crucial teen years and they had to deal with such a horrible diagnosis. there is no doubt it’s horrid, but you’ve got to pick your self up, push through, embrace the challenge of it all and strive to remain upbeat simply for the sake of your kids. And in doing so,your own attitude starts to get better and life goes on. Trust me I know this, it’s been 3 years of dealing with this and it’s a LONG road thtat lies ahead. Hang in there! I am here for ya!

  10. Becky says:

    Glad you can vent through your blog. You have so much on your plate. I am amazed by you, such a strong person. Your words, your honesty will help others knowing they are not alone in what they are dealing with, feeling, and thinking.

  11. Lee Ann says:

    I used to have a therapist that told me to “sit down and write and write and write until you can’t cry, scream or write anymore. Then get up and walk away from it, and your mind will still be working on what is bothering you.” I have noticed when you write a particularly open, difficult reality, such as this one, you take a few days off, and I think your mind is working on the problems. Its very therapeutic to write out your troubles. When I read this post, I thought, “Oh, she’s going to be off after this one for several days.” The other one I thought was going to be worked on for several days was the “I want the original please.” Both show your hurt and pain. I salute you for your real live feelings that come through so clearly. I think you are going to be allright. It may not feel this way now, but you’ll do fine.

  12. Alison says:

    Thank you for sharing the thoughts that my mom feels about my dad who also has early onset Alzheimer’s. it helps to know we are not alone

  13. A D B says:

    The “A” word is one that none of us asked for. Having a husband with it is as devastating as you describe. Constant prayer with God has helped me a lot. I rejoice for the good times that are left for us.
    My high school classmates described me “Weep and you weep alone, smile and the world smiles back at you.” To this day I believe that. Faith in God, prayer, good friends are what gets me through each day. Will keep you and family in my prayers.

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