Monday, September 5, 2016

I needed to escape.

"I don't know how you do it."  It is amazing how many times I hear that or read that related to my coping with Gary's disease.

It's easy actually.  I stay numb most of the time so it is not hard coping.  Yes, my husband of nearly 31 years suffers from Fronto temporal Degeneration and as of two months ago, lives in Memory Care.  We no longer live together.  He still knows me but is mostly non-verbal.  The words that emit from his mouth are either words that he hears in the background or answers to basic questions.  For example:  today, when asked whether he wanted a hamburger, hot dog or ribs, he responded, "Hot Dog."  When asked if it is good, he says, "Yes, very."  

It is difficult trying to have a conversation anymore.  That luxury is non-existent.  When I walked into the unit this morning, I was relieved to not see him sitting in his chair attempting to crease his pants.  Instead, one of the male angels had him sitting at a table and putting together "a underground water system" made out of a children's pvc pipe kit.  Gary was credited with making about 15% of the construction.  Those pipes kept him busy through a lot of the morning. 
Debbie shared her adult coloring book with me and we colored while Gary put together pipes.  I found it funny that Debbie kept looking at the front of the coloring book and referenced it as "cheating" since she was copying the color combinations.  I suggested that rather than cheating that she consider it a "color guide".  Being a good Christian woman, she liked that idea.

Then the Therapy Dogs came to visit.  Gary touched every dog, with some encouragement, and he really seemed to like the experience. He sparks to a little better level of sanity when he is around the dogs.  When the unit dog Annie realizes I am there, she jumps and wants to be held.  We have developed quite the relationship for a grown woman and a puppy.  I always hold her to Gary's face for a kiss and he always responds.  She knows that each resident needs her.

I experienced my first resident today who is bitter and has a propensity for being mean.  She sat at our table during lunch.  Gary was tapping his legs repeatedly and it was quite annoying.  I have become numb to that as well.  But when I watched this woman get aggravated, I again let down my guard and felt annoyed as well.  She said, "Stop him from tapping.  He is doing that on purpose!" I started to get angry and realized that she just doesn't know.  She can't remember from one minute to the next....well, anything.

In true wife-form I explained to her that Gary could not help it.  I said that his brain sends signals to his legs and he taps.  I asked her to try to accept it.  She said, "Okay, I will try."  This same woman was particularly needy when it came to her needs.  She came to the table late.  I was busy feeding Gary and Nancy their soup.  Since I'm at the table, I help her, too.  It gives the angels time to do other things.  She watched me feed Nancy for one, two, three, four spoons full of soup and politely said, "when is that guy going to come and feed me?  You have your hands full."   She does not need assistance eating but is certainly jealous of the attention.

The male angle came over and took her food order.  All of a sudden, instead of an old woman, I saw a young child who was very afraid of being alone.  As the angel walked away to get her some chips, she said, "Don't forget me.  Please come back."  I could only imagine what was going through her Dementia-mind.  I talked to her quite a bit, in between feeding Gary and Nancy.  This woman was bitter but I could tell it was the Dementia, not her spirit.   At one point, she pushed her plate away and snubbed the dessert.  She was never going to be happy. 

So, I go on.  I helped Gary finish his lunch and decided that I needed to escape. I can only take so much.  After sneaking out the door, I wandered to my car and to the store and home.

A few hours later, my daughter Heather and grandson came home from their weekend trip.  As I sit here, things are back to the new "normal".  Whatever that is.....I'm not sure I like it.  Don't get me wrong, I am not referencing Heather and Xander. Having them here is a comfort.  I am talking about going into a very busy week that also happens to be our 31st anniversary.  How depressing is that? 

So, to answer the question, "how do you do it?"  God's grace is the only way. 

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