Personally, it has empowered me and it has released me. However, the process continues and each day as we (my husband and I) struggle with this disease, nothing is predictable and everything can change from hour to hour. Confusion is the key word, and not just for him, but for me as well. How can he be lucid, and hints of himself one minute, and then suddenly, stare blankly at me, not recognizing where he is or who I am? I am dealing with a moving target. My response level is better, my understanding and tolerance has increased.
I have now taken over control of our lives, his life. This transition wasn't easy. It wasn't a role I relished. Admittedly, I am a bit of a control freak but I've always liked having a strong independent partner to counter me, to provide the balance in my life, to ground me. Decision making was previously shared. While my background as an administrator has prepared me somewhat for this role now all the decisions are my sole responsibility and it can be a bit scary. My decisions can be life altering for him as well as for me. If and when do I make the decision to "place" him in a nursing care facility? Should we sell our home and move to a smaller more managable place? How do I manage our estate wisely? These are concerns that I would discuss with a partner.
I no longer have a partner, a spouse who responds, who cares, who knows. I have a person who is childlike, at times difficult and helpless, in my care who will never get better no matter how well I care for him. This disease is progressive and it is global. It affects not only memory but a person's entire range of thinking abilities and I am more aware of this each day.
But rather than mourn the loss, I have made peace with it. My expectations are now more realistic and therefore, it has released me. It has released me to make choices without guilt for him and myself. Traveling without him will become easier because I know it is as hard on him as it is on me. Planning to take better care of myself and therefore, able to better care for him has become a priority. I can now leave him in the care of others, knowing he is safe, involved and content. And I am able to enjoy the moments of connection with him however brief and spontaneous.
This is a challenging and awful disease. It is a cancer of the soul, it erodes the essence of an individual, it shrinks the brain until there is nothing left but the shell. Medications at the moment are designed only to slow it down. There is no cure.
Therefore, one must disconnect, must stop looking for the person inside the familiar physical being. One must be a caregiver to someone who will never benefit long term from the loving care that you provide. The best you can provide is safety, security and comfort and only in the moment. There will never be acknowledgement, or appreciation. There is no payoff.
Unless you count the strength, the fortitude, the personal sense of value you have acquired. You learn to appreciate the smallest of victories and enjoy the gifts of each day in your life.
Friends who have remained your allies and family who love and support you become all important as sources of comfort and joy.
Yes, I have become a savvy caregiver and I have learned incredible skills in caring for him and most of all......me.
