Sunday, April 24, 2011

Living a Nightmare.

Sometimes I feel like I'm living a nightmare.  A really elaborate one complete with sleep walking and going through the motions of every day life.

One day I will wake up and this will have been one extremely long bad dream, and everything will be alright again - I will have my daddy back again.
But deep down I know this is not true.  There will be no awakening.  

This is not just some horrible dream.  This is reality.

And I must face the fact that my daddy will most likely not be able to walk me down the aisle at my wedding.  He will most likely never know his grandchildren.  He will never travel to the places he's never been and has always wanted to see.

This pain inside of me will never go away.  It may lessen with time, but it will always be there - a hole in my heart where the future with my dad is supposed to be.

I used to think I had lots of time left to spend with my parents.  But now I realize how precious right now is.

I will try to not get impatient when I cannot understand what he wants.  I will try not to be annoyed if he wakes me from a nap when he needs something.  These are selfish feelings that will pass, that I regret having.  

I will try to make sure he is comfortable.  I will try to be more open about expressing  how much I love him.

As a child you think that your parents will live forever and will always be there for you.  It is difficult to suddenly be blindsided by the fact that this is not true.

Sometimes I feel like life has kicked me in the face.  Repeatedly.

Monday, April 18, 2011


I am 26 and my father was diagnosed with ALS in August of 2009.   My mother, my 23 year old brother, and I have been the only caregivers for him for some time now and it is getting harder and harder.

I have decided to start this blog in order to address the toll (emotional, etc.) that having a parent with ALS takes on teen/young adult children.

It seems to me that it is difficult to connect with others going through the same situation because, at least in the support group my family attends, a lot of the young adult children live away from home, or the PALS do not have such young children.  I was thinking that it might be easier to connect with more people in the same situation as I am by using the internet.

Maybe if we all shared our experiences, in general and regarding specific topics, in one place we could form sort of a teen/young adult support group.

If anyone who reads this has any ideas for topics, please let me know!