Cody Updates by Mom

I have had a long time to think.  To think about what is happening to my mom.  What is happening with my child.  Not being the parent that I should be.  What is happening in my life.  Needing to step up at work and life.  I am constantly bombarded with those things that I must do.  Those things that I didn’t accomplish today.  Those things that I failed at.  I then think of my mother and the journey that she has taken with this horrible disease.  Over the last months, I have been going through how I will commemorate my mother at her funeral.  My hope is that we can show you the wonderful person that we had the blessing to be from.

A friend once told me about the space between the notes.  The breath of no sound is just as important as the sound.  I think of that now as I know that my mom is struggling to even remember who my sister is.  My sister has become the mother to my mom.  The caregiver.  The one in charge.  I can pretend that I know what she deals with daily but honestly, I do not.  She is stronger than me in so many ways.  She is struggling with all this but is not giving up.  So in the end, we are a team.  She provides that day to day care and I deal with the insurance companies, banks and other legal/financial stuff.  We, the two of us, have a bond that has travelled to dark places and helped each other walk toward the light.  I love her more than I can ever show.

So, what is this space between.  As we have travelled this Alzheimer’s road to hell.  I think about my mom as she struggles to find the words, a lost soul that cannot find home, a child that has lost their loved ones.  I believe that she is now living in those spaces between the notes.  We all hear the notes and feel the music, she is hearing what is in that space.  That space, that breath where the music isn’t, it is scary.  It is lonely and it is sad.  I cannot bring her memory back.  I cannot fix her disease.  Helplessness is a thing that plagues us all.  We can play the music and hope that she can hear it.

In all of this, we (my sister and I) have to be parents, sisters, friends, bosses, coworkers, grandmas and so many other things.  Those things in life that are normal take a bit of extra stuff to be.

It takes a level of “umph” that is sometimes hard to find.  Yet, we do and we carry on.

A quick update.  Many people have been contacting us, mostly to Linda, to find out how mom is doing.  It is hard to text, email and message many people back.  Linda and I will be figuring out how to do a live feed weekly to give everyone an update.  To tell you where she is at in life and how things are going.  We will give more info as we work out the details.  As Linda manages the day to day life she will be the focal point of the feed.  I can provide help, support and be there to answer questions that come up.

I would be a liar if I said that I was comfortable with all my decisions.  I am not, however, it is the role I chose.  I will continue to fight for my mom to have medical support for pain and confusion.  I will also continue to fight that my mom stays where she is.  No matter how good of a memory care center you have, there is nothing that can compare to being surrounded by family that loves you and adores you.  In that, I am eternally grateful for where my mother is.

If you have the time and want to stop by, please let me or Linda know.  My mother doesn’t recognize very many people but she loves company.  Having company also allows my sister a small break of having my mother need to physically hold my sisters hand all day.  Please know that this is a real and daily occurrence.

To those of you that do come.  Thank you.  Sandy, you are truly an amazing person and we are grateful that you come and bring my mother communion and spend so much time with her.  You are such a wonderful spirit.  Debbie, I cannot express in any words the appreciation that we feel for your support and willingness to step in.  We are truly indebted to you.  My sisters family, you guys are rock stars and I cannot thank you enough for sharing your home with this person that is so important to all of us.  Thank you.

Someday, I think that we will all hear the space between the notes.  My hope is that we can still hear the music that surrounds that space.  Peace and love to you all.