Monday, July 31, 2017


It has been a tremendous honor to continue the blog series for Jason's Connection.  There is such wonderful power which comes from caregivers banding together and sharing pieces of themselves.  The website includes content in current events, inspirational stories, resources, art, and blogs.  Most importantly, it provides us all with a feeling of belonging.

When Tyler was a baby, I remember how people would love to talk to him, and have him around.  We went to gatherings, relatives, and out to eat.  We continued with hobbies as usual, and did our best to maintain a "normal" life.  Tyler would gladly tag along for whatever trips and activities we planned.  I have fond memories of walking on the boardwalk at Ocean City, Tyler up on my shoulders.  He loved to watch people and wave at them as they passed.

Soon Tyler grew older and the behaviors began.  He was bigger and much less comfortable with his surroundings.  Getting into enclosed places or into crowded places made him edgy and aggravated.  This is where the isolation began.  I didn't recognize it at first, but it was starting.  

As Tyler grew older still, the behaviors became even more intense.  He was especially difficult to handle when I would be away for the evening.  We created more and more strategies to make sure I wasn't separated from him for long periods.  Eating in restaurants became more difficult, so we started to rely on more take-out.  We carefully selected our vacation destinations to match his needs.  

During one of the more difficult behavior periods, I was scheduled for a weekend bowling tournament a few hours away.  It was rare at this point that I would even consider this, but I felt compelled to have a weekend with friends to have a good time.  It wound up being a disaster.  Tyler was anxious that I wasn't around, and his behavior escalated all weekend. Each time I called home my wife was crying and frustrated as to what to do with him.  I counted down the hours until I got home again.

And so it would be as the years went on.  We withdrew from activities more and more.  We had some wonderful friends that would come spend time with us at our house, but we no longer visited at anyone's home.  Even our family saw us less because it became harder to visit them.  Before we knew it, we were spending every day just trying to survive without major incidents.  It was like we circled the wagons to keep ourselves, Tyler, and everyone else comfortable and safe.

In the last few years of Tyler living with us, we had become extremely isolated.  Tyler and I would spend our evenings downstairs in the man cave.  He was fairly happy playing his wii bowling, and doing other activities, and I would watch TV or work from my laptop.  My wife and daughter would be upstairs in the living room.  We were actually to the point of isolating ourselves from EACH OTHER.  

Isolation usually does not happen overnight.  Rather, it is a slow progression that one day I looked back on and realized just how far it had gone.  That isolation contributed to my anxiety and depression.  Worse yet, the isolation can feel like the best option, or the only option, so we did it more and more.  Its like a cancer that slowly spreads.

It's easy to say...don't isolate yourself!  But reality is what it is.  The important thing is to step back and take inventory of the ways you are isolating yourself.  Once you do that, find ways to minimize the isolation.  Find some alternatives to what you feel you cannot do.  Try to take full advantage of opportunities that you do have.  Simply recognize that it is a dangerous and debilitating element of what we do as caregivers and that we must fight it at all costs.  We must preserve our sense of self, even in small doses.

My prayer for all caregivers tonight is to get that breath of fresh air, even once in a while, that lets us know that we are still social individuals capable of happiness.

Be well and God bless.   Tom  

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