December 15, 2009 – WHO ARE YOU??

12/15/2009

(REAL-TIME ENTRY)

My dad is fading away now by the day.  His degradation milestones used to be quarterly, then monthly, lately weekly, but now it’s daily.  The magical sparkle in his charming blue eyes that used to light up my world is now totally gone.  I catch him looking through me sometimes when I speak to him or, worse, he doesn’t look in my direction at all. 

Any more than two people in the room talking now seems to be too much for him.  In those moments, he dips out of what’s happening in the room and gets lost in his own private world.  It’s like I can literally see and feel him floating away from us… 

In those moments of disconnect, I find myself sitting on the arm of his chair, stroking his hand, rubbing his shoulders, scratching his back, somehow lovingly touching him to try to reconnect.  When he looks into my eyes and there is some person-to-person connection, as small as it may be, I feel as if everything is going to be okay.  At least I got him back for the moment!

I am seriously trying to figure out how to measure what’s left of him.  I mean, when he looks at me, is the connection 10-percent of what I used to be able to expect from him when he was my powerful, loving, doting father?  Or is this phase really 20-percent?  Or are we down to 8?

In my desperation, I get in his line of sight and gently grab his hands, trying to have just ONE MORE moment with him, trying to coax him back to a place where we can connect one more time… 

It’s almost pathetic how you start clinging to the small percentage that’s left.  How, out of desperation, you get in his line of sight trying to have just ONE MORE moment with him, trying to coax him back to a place where you can connect one more time.  And then you find yourself actually grateful for that one smile or one more “Oh, hi, Jo!”  God almighty, this is such a cruel, nasty disease on so many levels!  I miss my buddy!  And my poor mother – when she got home yesterday and said hi to Dad, he perked up, reached out to shake her hand and said enthusiastically, “Hi, I’m Frank Firek.  It’s nice to meet you!”  You can almost hear your heart breaking.

So today was Dad’s in-home assessment by the staff of Sunrise Assisted Living.  The purpose of the visit was to determine his needs and level of cognition and to then place him properly on the appropriate floor or ward of the home.  Mom has been very worried that when they came Dad would be having a great day and they wouldn’t know the truth about how bad he really is.  Well, that’s not at ALL what happened today.

Mom said Dad was having a bad day when they arrived; he was really out of it.  When they asked him how many children he had, he didn’t know.  Mom says he didn’t even take a guess.  Next, they asked him for the names of his children.  Again… nothing.  Then they asked him for just ONE name of ONE his children… and Dad couldn’t come up with any of our names.  Mom then tried to connect with him, told him look at the family portrait on the wall and try again.  Nothing.  No one was home.  My mom was all alone.

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8 Responses to “December 15, 2009 – WHO ARE YOU??”

  1. Jill Keller said

    Joleen,

    You are soo brave to share all of this! It’s heartwrenching to read-I can’t imagine actually living it. You and your family are in my thoughts and prayers everyday. Stay strong and hold on to all the amazing memories that you do have & hope that your Dad is maybe emmersed in a really happy place with all of those wonderful memories. Love ya Jo!

  2. Deb said

    This is such a horrible disease that robs you and your family of EVERYTHING. I have often wondered what goes on inside the mind of someone who has this disease. What do they think about, or do they think? And I have also always wondered how it is that they don’t know anyone around them but they always remember their own name? Strange isn’t it? You and your mom & dad are in my thoughts and prayers daily!! Love you guys so much!

    • Thanks, cuz! I know my mom is thrilled that you’re helping with Dad over the holidays. And thank goodness you recently saw Dad at dinner because I’m not sure he’ll remember you next time. 😦 Regardless, it will be a good excuse to have you close to us! 😉 xo ~Joleen

  3. Judy & Jim O'connor said

    My darling, Our hearts just weep for ALL of you. I pray for legions of Angels to wrap their arms about you just for comfort through these last days together…………..and forward. YOU kids, will never (and Fran) have ANY regrets. You ALL have been noble beyond comprehension!

    • The constant foot traffic through our home this week by supportive friends and family has really helped relieve the load. Plus, then Mom and I have more drinking partners at night! 🙂 The Angels may already be here – I somehow manage to locate an upside to things at the end of each day so maybe that’s them at work! 😉

  4. Jan Wilhelm said

    Joleen,
    Thank you for sharing. I know that your Mom is thrilled to have someone with her, especially during the Christmas season.

    Love and prayers to you all!
    Jan

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