Archive for March, 2013

I Want More.

Our engagement picture, 1997

Our engagement picture, 1997

 

My children are losing their father one brain cell at a time. It tears me apart at times thinking of this.  It is hard enough to lose the person that you thought you would grow old with.  The person that you have shared family secrets, family holidays, intimate desires and moments,….. the person you love and want to be beside you when you need someone to turn to, to trust, to confide in. I want to shout to the world “STOP.  STOP worrying about guns and extra large sodas and cruise ships that are stranded in the Gulf of Mexico.  Help my children keep their father from fading from them right before their eyes. ”

Sometimes it is so much more than I can bare.  How am I supposed wake up each day knowing that their Dad, the one they look up to and love and expect to always be there is slowing slipping away? It is killing me too.

What do you do when that person is still sitting right next to you, but won’t remember the conversation you just had?  They don’t remember an argument or a comment or a question or what laundry they just started in the washing machine.

How do you keep a smile on your face for everyone when all you can think in your head is whether or not he will remember to pick your son up from school?   Is today the day you realize he can no longer drive?  You just want him to remember that you love him unconditionally and will do whatever you have to do to take care of him.

But deep down inside you wonder, can I?  Can I take care of him and the kids?  Can I work full time, keep track of him and the kids and their schedules and schoolwork and the bills and cleaning and dinners and lunches and yardwork and oh my God.  How am I going to do this?  I have to.  I know.  But how?  How? What is the secret?  What can I do to make it easier for Jim? Should I put him in a clinical trial study?  What can I do to make it easier for the kids?  How can I stop this from affecting their childhood and ruining them for life?  Isn’t this the type of thing you read about that either makes a person into a great something or another or it makes them fall into a downward spiral and they end up in jail, on the streets or dead?  How do I keep my kids happy, staying positive, changing the world, not letting all of this bring them down or becoming bitter?  Isn’t it all up to me?  Don’t I have to make the difference? How?  What can I do?  I must protect them from anything that will make them feel like it is their fault or their burden.  I must protect them from worrying about the bills or Jim or that they will also one day have this dreaded disease.

I must make them appreciate the time they do have with him now, when their natural inclination as kids is to take for granted that we will both always be here.

I must make sure that I am always here.  Oh my God.  What if something happens to me?  Oh, please, please, please don’t let that happen.  I can’t stand the thought of Frances or Brad not having one of us here to remind them how much we love them and how proud we are and how we would give anything to hug them one more time.

When I first had Frances, I was just floored.  Floored by the love that I felt for this little creature.  So many parents feel the same way when they have their first child.  I remember becoming terribly afraid of dying.  It had never really bothered me too much, but all of a sudden, I couldn’t think of leaving her without her knowing how much I loved her and how much I wanted to be with her.  It was the same way when Brad was born.  Now that they are a little older, I realize that if I were to die tomorrow, they would at least have pictures and some memories.  I have told them enough times how much I love them to have it embedded somewhere in their immature brains to last for a long time.

But, I still never want to leave them.

And I know Jim feels the same way.  This man LOVES his children.  He is patient and kind and shows them love every single day.  I only hope that as he begins to decline in his ability to show them, they will be able to recall all of the times he has sacrificed and shown them how much he cares for them and that he would do anything for them. Will an 8 year old remember the Dad that threw ball hours upon hours with him?  Will a 12 year old remember the Dad that sat and read to her for hours as well?  I don’t know about you, but I don’t remember a lot about my parents from when I was 8 or 12.  How do I keep the love and devotion that Jim has for his kids alive for so many more years to come? Through the decline they will witness and become immersed in; the decline they are baring witness to each day.

I have begged him and explained to him how important it is for him to write them letters.  Letters for the future.  Letters to be read on birthdays and special occasions.  He agrees.  But like so many things these days, it is important, but then it is gone.  Into thin air.

I know him.  I know that he would want to do these things for his children.  He loves them more than anything in this world.  He wants good things for them.  He wants them to know him and how much he cherishes them. He has sobbed and told me he doesn’t want to miss seeing them grow up.  It is utterly heartbreaking.

But, he is unable to keep focused long enough to follow through on tasks that will  remind them years from now.  I know he wants to be part of their graduations and weddings.  Those are the cliché’ moments.He wants to be there to help them figure out life.  What college to attend.  What to do about a friend that isn’t being a good friend.  How to change the oil in the car.  How to drive a stick shift.  How to navigate the dangerous field of love.  How to build a treehouse and how to play racquetball and how to be a good person.  Because he has mastered these things and it crushes me to realize that he will possibly be here physically, but will mentally be unavailable.

Please just tell me what to do.  How do I stop this process of circling the drain and not being able to grab hold of the slick porcelain we are spiraling down on?

I cry as I write these words.  Jim is a wonderful person that deserves so much more.  Our kids deserve more.  The world deserves more.  As grateful as I am for all the years I have had with him, I am selfish.  I want more.  More time.  More love.  More conversations.  More laughs.  More vacations.  More tender moments.  More.  I want more of him.  I search everyday for parts of him to hold on to.  He is still here, focusing on tasks at hand and working hard at just being.  Just being himself and a good dad and a good husband.  He is trying so hard.  I love him even more for this.  But he is not the man I married and I know this.  He knows this. The kids know this.

We will survive.  I will make sure.  But it isn’t going to be pretty or fun or easy.  I will keep moving forward, but that doesn’t mean I have to like it.  I want to go back.  I want to go back to the time where I thought Alzheimer’s was for really old people and when I thought that this man of my dreams was going to be mine forever and we would retire together and travel the world together and visit our grandchildren and no matter what, be together.

I am waiting for Yesterday….

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