A Balancing Act Like No Other

If you have been reading my blog for more than a few months, you know that I believe the unsung heroes in this world are caregivers. In today's article I will use the example of the married caregiver knowing very well that most of what I discuss applies to all caregivers.

Being more mature (an old codger) I remember the entertainment shows like Ed Sullivan and Red Skelton. They brought on a variety of acts including jugglers and plate spinners. Everyone has probably seen the plate spinners that begin with one plate and spin it on a stick. Then they go to the next one and the next spinning those plates while occasionally having to go back and re-spin the original plates. If the person spins the stick to fast or hard, the plate will go flying. If the plate spins to slow, the plate will lose its balance and crash to the floor. It takes a keen eye, patience, and some degree of skill to keep the plates spinning.

Balancing work, children, as well as a social and home-life is difficult enough for the average woman today, but now add in the role of caregiver and it becomes even more complicated and stressful. It is like adding another bowling pin to juggle or another plate to spin when you are already at your limit. The job in itself wears on a person, but when you add in the mental and emotional aspects that a caregiver has to put up with, it becomes close to impossible to pull off. Being that there is no "Caregiver 101" course at the local college, the role is totally "on-the-job-training."

Probably the most difficult aspect of being a caregiver is the fine line that she has to walk between being helpful or smothering. The caregiver not only has to be helpful and supportive, she also has to be a mind reader. The dozens of questions she has to ask herself daily include,

• "Do I offer to help or can he do it by himself?"
  
• "At what point do I offer to help?"
  
• "If he tries to do it by himself, could he get hurt?"
  
• "Should I just do it and put up with his criticisms afterwards?"
  
• "If he tries it and fails, will he blow up or will I receive the brunt of his anger?"
  
• "If he tries and gets hurt, can I still get everything else done (job, children, housework, etc.) while helping him through the recovery?"
  

I always talk about developing "win-win" situations. Unfortunately, the role of the caregiver is often not that easy of a choice. She is dealing with a man's ego, insecurities and his machismo. They are fragile, no matter what the situation, but then add in the affect of the progressive wasting away of the muscles and it becomes an almost impossible situation for everyone in the house. I believe that most men living with Kennedy's Disease at some point (and perhaps frequently) question their value in being the breadwinner, father figure, husband and man of the house. This especially becomes apparent when challenged with a chore that the man use to be able to accomplish, but now finds it difficult if not impossible to do. Talk about frustrating.

Knowing when to offer to help or just walk away is not easy. Add in all the other responsibilities a caregiver goes through and you can begin to imagine the choices she makes every day ... often without so much as a thank you. Yet, somehow things get accomplished and life goes on ... mainly because of that wonderful woman who just happens to love you.

This post is my way of saying "THANK YOU" to my wonderful wife and to all those other caregivers out there. Without you, life would be extremely difficult, if not impossible. On behalf of all of us men living with Kennedy's Disease, we apologize for those times that we lashed out in anger because you were the only one in the room. You are all saints in my book.