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)