Tyler Ups and Downs

When you are the caregiver of a special needs person there is an undeniable truth that will continually come to the forefront....there are going to be ups and downs.  

Yesterday we were attending church when Tyler and his staffer arrived and took their usual place toward the back of the sanctuary.  He appeared to be in a good mood as he was smiling and acknowledging others.  Robin, Sam, and I remained toward the front of the room so as to not distract him during the service.  As usual the service was filled with friendly fellowship, a thoughtful message, and music coming from the heart.  It is a congregation that embraces the loud chatters of its special needs participants.  It also welcomes good humor, tears, and hugs.  

At the conclusion of the service I'm sure Tyler was eager to duck out the side door as he usually does.  After all, an hour for him, doing anything, is his limit.  Instead, his staffer moved him toward us.  I suppose being excited to see him I rushed up on him a bit quickly and gave him a hug, which seemed to surprise him a little.  The combination of being surprised and being pulled in a direction opposite of the door wasn't sitting well with him and we decided to just allow him to go on his way.

I watched him as he walked out the door with his staffer.  He was once again happy to be on his way, heading back to his routine.  At that very moment he needed what is now familiar to him.  This time it was me who invaded his space.  On this occasion we just needed to say goodbye and let him do his thing.  It wasn't the reality I wanted to confront in that moment but he needs his security and routine far more than he needs any single person...even me.

It seems to be a universal thing with special needs, you never quite know what you will get on any given day or any given situation.  No matter how much I know this to be true, I couldn't help but respond to the way I was feeling at the time.  It was disappointing to have it turn out differently than I was hoping for, but I do understand.  It has to be about what Tyler needs in order to be happy and comfortable.  That certainly doesn't mean I don't feel the sting of what that reality means, its just how I choose to deal with it.

I'm sure there are readers that have a parent with dementia who are coping with those bad days where they don't recognize who they are.  And others who have special needs children that struggle with days of aggressive and disrespectful behavior.  We don't ever get used to that pain so we have to find ways of rationalizing it.  It leaves us hurt and asking questions that likely have no answers.  What could possibly feel worse than someone you have loved and have known for so long not knowing who you are or wanting you to be there?

What I find to be the key thing to do is to manage your expectations when you can. Understand the situation and consider the best case and the worst case scenario.  Enter the situation in a fairly neutral state of mind and then gauge how the situation is playing out.  If its one of the good days you can increase the interaction.  If its one of the bad days, you can consider have shorter and less intensive interaction.  Applying this approach can save stress for the other person, and manage the stress for the caregiver involved.

One last point, this is where support groups, therapy, church, family, and friends are SO important.  The emotions to this level of care are more than most people can handle without means of support.  While it may feel like you are "handling it" at the time, the lasting effects are accumulating and festering deep inside, and they will find a way to cause havoc somewhere down the road. 

 Be well and God bless.    Tom