Silently Screaming

"Speaking slowly and in a low, calm voice is usually always best…..After you’ve asked a question, be still and give them time to answer.  Waiting 15 seconds for a response may seem like a lifetime – try it out and you’ll see.  But processing time may require that you don’t rush them and wait it out.  Patience is absolutely required." (from Dementia SOS)

Ooooookaaaay.  I got it.  Stay calm.  Be patient (long-suffering without anger!).  Wait it out.  Simple….  Straightforward….  HOW IN THE WORLD DO I DO THIS DAY IN AND DAY OUT???  Not well, I tell you.  Not well at all.

I have been silently screaming my way through the week.  First a soccer game where he abandons his walker, trips on the stairs and is indignant when I insist that he use a ramp.  Next the PT/OT assessment where the OT remarks what a great memory he has and how well he seems to be doing.  In fact, so well that she doesn't have anything to really offer him.  She encourages him to stay active and be helpful around the house.  The new neurologist remarks that my husband is walking quite well and has good muscle tone and balance.  In response to my question about his safety judgment, the doc asks me if I think my husband would know to call 911 in an emergency.  That's the doc's test of his safety judgment?  Are you kidding me???  

According to my husband everyone is making mountains out of molehills and he should be given complete freedom and independence to enjoy his "retirement".  He'd like to get going on his bucket list -- Hawaii, Alaska, train trip across Canada, see the Northern Lights.  

Whoa.  Retirement?!  He was being disciplined by his employer BEFORE his back surgery and the subsequent complications.  He wasn't doing his job.  He wasn't completing tasks.  They found him sleeping at his desk.  He was playing games on his work computer.  His coworkers had been protecting him for at least a year.  They were working around him.  The same has been going on at home.  No participation.  We have been working around him.  He didn't retire.  He QUIT…. on his family and his job and his life.  

Is it dementia?  At this point I really don't know.

So I keep my voice low and calm.  I ask questions and wait for answers.  I sit but not really still -- my foot is shaking while I wait.  And I silently scream.

Faces of Love

I love getting together with my big family.  Every gathering is a bridge to both the past and the future.  Grammy at 96 years old can't hear very well, or walk very fast, but has held every baby born in this family for the past 70+ years.  The siblings, who have fought, laughed, cried, united, pulled away and united again, know the rhythm of true lifetime relationships.  The cousins, old to young, married, single, students, children, workers -- and yet all share certain visible characteristics of this family.  Quick smiles, expressive eyes, lots of affection.  There are stories from past gatherings, stories being made and many stories yet to come.  And every story joins us to our younger selves.

I looked around a table last night and saw amazing faces of love that were united, not by blood, but by choice.  Bridges to the past when all, including my husband, were young, strong, athletic.  Back then none had grey hair or fat bellies or diseases.  Back then the future was bright.  Dreams were big.  Responsibilities were small.  Around the table I saw men and women whose roads diverged in pursuit of their dreams.  All have battle scars of real life.  All have medals of honor for the courage they have to keep going.  All came back together to celebrate my husband's birthday and to love him through his failing health.  And all offer their love and support to me.

I am richly blessed.