Archive | June 2013

Understanding is impossible

I had a moment yesterday.  It was one of those “eureka” moments when for just a brief fraction of time, I thought I had learned something about Alzheimer’s disease.  They don’t happen very often but when they do, my heart fills with hope and for that little moment in time, I think we may be moving in a positive direction.  It never lasts.

Alzheimer’s is disease is a trickster.  There are days on end when the repetitive cycles of my Dad’s brain just wear us all down.  But then, something happens and my Dad (the one I know and love) resurfaces.  Conversation flows normally and he exhibits the social skills that made him such a success in business and personal relationships.  Just when you take a deep breath, preparing to enjoy this moment of clarity, it is gone again.

Since moving to the assisted living facility, Mom has gotten a lot of attention from the staff.  She is getting physical, occupational, and speech therapy.  Dad gets little more than acknowledgment of his presence there.  I guess most aren’t motivated to engage someone in conversation that won’t remember it two minutes later.

While visiting yesterday, Dad was once again stuck in that endless loop of five questions that I respectfully answered with each cycle.  It’s always the same and it is always exhausting.  But then, the therapist showed up to give Mom some speech/mental exercise.  For thirty minutes, my Dad sat quietly observing the therapy session, holding my hand, and occasionally whispering the answers to the questions to me.  He was literally – in the moment.  For thirty minutes, my Dad was normal again.  It was stunning to watch.  And, when the therapist finished, it was over.  What flipped the switch in my Dad’s brain?  How could he be perfectly normal for 30 minutes and then instantly revert back to the loop of five questions?

Driving home, my mind was racing with ideas of how we, as his family, could initiate a similar response as the therapist.  Was it focus?  Was it structure?  Was it her demeanor that demanded respect and attention?  What did she have that we don;t?

I raced inside to call my brother, wanting to share the experience with him and brainstorm with him on how we could use this experience to enhance our time with Dad.  As the realist in the family, my brother simply said – “you’re trying to make logic where none exists”.  He’s right.  Understanding the Alzheimer’s brain is impossible for an average person like me.

The lesson is clear.  These moments are rare and precious and should be cherished rather than analyzed.

“Is This My House”

After a while, one starts to wonder just how many times a human can ask the same question.  And then, one starts to wonder how many times it can be answered the same way – verbatim.  Mostly though, one wonders how to stop it.  It’s maddening.  It’s exhausting.  It’s…Alzheimer’s!

Mom and Dad have been in their new assisted living home for eleven days.  It has been a great change for Mom.  In such a short time, the staff has fallen in love with her and she is the first to arrive at any activity offered by the staff.  She’s been on van rides, played bingo, listened to a gospel quartet, and more.  The woman who could barely get dressed in the morning is the fashion icon of her new community and she hasn’t had her afternoon nap since she arrived.  She’s just too busy.

Dad, is another story.  He has gone from thinking he is in a hotel to thinking Mom is in the hospital.  And through it all, he is stuck on one question – “is this my house?”  Actually, that’s not completely accurate.  He is also stuck on “this ain’t my house”, “where are my clothes?”, “is my car here?” and “how do I get home from here?”- over and over and over again.  Thirty minutes with him seems like an eternity.

The staff tells us he will eventually adjust.  We wonder.  One of the other residents told me yesterday that she doesn’t know how my mother remains so patient.  I laughed.  My Mom is anything but patient.  My brother and I worked so hard to make Mom and Dad’s room look and feel like home.  We filled the walls with familiar pictures and things that mattered to both of my parents.  Although we purchased new beds, we used their old familiar chairs, dresser, chest of drawers and tables to  help ease the transition for Dad.  It didn’t.

Two days into the move Dad became very agitated and we had to increase his dose of Seraquel.  It helped but now, he cries – a lot!  And the worst thing that has come from the move is that my Dad seems to have lost the part of his brain that knew my brother.  He knows he has a son but doesn’t recognize him when he visits.  That broke my heart.  My brother is a good man and he has worked so hard to make this move happen.  It rips my heart out when my Dad looks at him and says “Do I know you?”  My brother says he understands and that it’s okay. It’s not okay – not with me.  He deserves so much more than to be erased from his father’s memory.

After only eleven  days, I am now having to talk myself into visiting.  I’ve been there all but one of he eleven days but I catch myself dreading it and looking for a good excuse not to go.  It isn’t fair to Mom though, to punish her for something none of us can control.  And so, I will put on my happy face and I will go again today.  I owe them this and I don’t want to live with regret.  I won’t let this monster (Alzheimer’s disease) keep me away from the people who loved me when I was unlovable and who have always been there for me.  My Dad raised me to never back away from a challenge.  I won’t disappoint him even though I know that today could be the day when his memory of me is erased.

If you wonder why I write it is for one reason only.  Until there is a cure for this insidious disease, we have to help each other face the difficulties it brings.  So many others have reached out to me, shared their experience and stories and helped me to understand that I am not the first to feel these things.  They have helped me to understand that we are not alone facing the monster.  I am grateful for their kindness and hope that our experience will help someone in the same way.  That, is why I write.

False Hopes and Reality

Never think for a moment that making the right decision will make all your problems disappear.  It works for most things but certainly not when you’re dealing with Alzheimer’s dementia.  I hate this disease more every day.

We made the move to assisted living yesterday.  After only 12 hours, Dad’s bad behavior has escalated.  He is completely discombobulated.  Is that really a word?

To sit with him for even half an hour is exhausting.  He is hostile, confused to time and place, thinks he is in someone else’s house, and wants to go home but…can’t find his car.  There it is, the damn car again.  I am starting to feel like we’ve been fighting about the car my whole life and I’m 58 years old.

My mother’s heart is broken.  She loves her new home at the facility.  The people (staff and residents too) have been more than welcoming and are treating her like royalty.  And then, Dad pulls the rug out from under her with his constant repetitive questioning and yes, hostility.

The staff says we have to give this time and I know they are right.  I just don’t know how much more time my Mom has under this kind of stress.  We all understand that Dad is incapable of understanding what has taken place.  We are sympathetic but his paranoia and hostility make it so hard to keep trying to love him through this.  Don’t panic.  We do love him and always will but dang this is hard.  I think when we were planning this move, we allowed ourselves to be lulled into a false sense of hope and it is a far cry from the reality.  This just stinks!

Moving Day Looms on the Horizon

Decisions have been made and fears cast aside.  Moving day is looming on the horizon and we wonder – will it bring sunshine or storms?

 

Mom is excited.  My brother and I are relieved but we have no idea how Dad is feeling or, if he is even aware.  Our biggest worry now is over his capacity to cope with life in an assisted living community.  We have more questions than answers but are satisfied that we have made the best decision for our situation.  In just a few days, we will sleep knowing that someone is watching over our folks in the dark hours of night.  We take great comfort in that.

 

The next few days will leave little time for writing but I will return with what I hope will be nothing but hopeful, happy, funny stories.  As we step onto this new road, I wish each of you who is living under the cloud of Alzheimer’s the same peace that we have found since making a decision.