Respect and Dignity

    I don't know exactly how, but I have had friends from all walks of life. Every imaginable occupation, every imaginable background.

     I had a friend who was very involved in union politics. If you are familiar with long term support staff in unions, you may have an idea of the type of individual who helps union presidents get elected.

    Colorful would be an understatement.

    Anyway, he used to have this saying, "Now you will find out where the rubber meets the road."

     An odd saying. I never truly understood its roots or history, but I always knew what he meant.

     There are things that you will just KNOW when you KNOW.

     Some call it intuition. Some will say that God spoke directly to them. Some call it gut.

     Whatever it is. It is personal.

      I keep hearing his voice and advice in my head today.

      Respect and dignity are not just words.

      This year, I have been on a major collision course with those words.

     When my aunt was ill, for weeks before her death, we talked about things. Occasionally we discussed what she wanted when it was "time".

     She really didn't plan things out. She didn't answer all of the questions that someone with a terminal illness is asked. She didn't write it all down.

     I did the best I could.

     I say that because honestly, that last week was awful beyond any kind of awful anyone should ever know about.

     Did she want this? Did she want that?

     The questions flew around.

     There were a few things she had been adamant about. Those were the things that were done, or not done, according to what she had said.

     It did not matter what WE wanted. It did not matter that WE were not ready for this to happen so quickly.

     We had to respect her wishes and treat her with dignity.

     Caring for aging grandparents, I am seeing the same issues.

     I have had way to much mental exercise on this topic.

     When I was younger, I worked as an advocate for developmentally disabled adults. The rules were very clear: Although the IQ numbers may be compared to those of an average 7-9 year old child, each person is to be treated as an adult with choices and rights.

     Maybe you think that doesn't sound so difficult. Maybe you think it sounds impossible.

    I assure you that statement requires more thought than you would guess.

    So anyways, just because a person's behavior may be more childlike does not mean they do not deserve respect and dignity. Yes, there are certain things that must be done to ensure their safety, but ultimately, they need more than ever to be valued as an adult. They need their decisions to count.

     The same can be said for us.

     We know that some of our decisions right now may not make sense to everyone. Each person has their own unique experiences that affect their judgement. Each person has a right to their opinion.

    Now, let me tell you another secret. I can carry out the exact wishes of another person. I can and have done this even when it has caused me tremendous stress and heartache.

    My husband is writing down all of his decisions. So far, although it is not pleasant, I have been able to agree to all of them, but I see one that I know is going to be very difficult.

    He is doing this to be clear. He wants it written so that if someone wants to attack me, they can view the document for themselves. He is trying to protect me.
    Protection? From pain? From the heavy burden that comes from making these decisions?
    Yes.
     Will it work? Well, I would love to say that this makes it all so much easier. I would love to say that nobody will say anything to me about how terrible it is that I "let that happen".
      I know the truth. I also know that most of the people reading this care about both of us. Most of the people reading this know us well and really want the best for us.
     That is the point of respect and dignity. Sometimes what we believe is the best for someone is just not what that person wants. How they want their medical care handled, which treatment they choose or did not choose, whether someone wants life support or not, a hospital or home, right up and including whether someone wants a casket or cremation are just not up for debate anymore.
     Each of us deserves to feel some control.
     Yes, it is all an illusion, because if we actually had control, our bodies would not fail us. We would still ride roller coasters and eat spicy food at 88 years old. We would run a marathon at 90 and not worry about a hip replacement, a pacemaker or anything else that may have already failed us.
     I can tell you that in the moment when everything seems to swirl, I have seen a wash of relief in the faces of those who have "decided" what they want.
     That is not mine to take away. I have seen the terror when someones wishes are not followed. Their eyes screaming, "Please, NO! This is not what I want."
    Respect and dignity.
    Those words are hard and sometimes cruel. When it really matters, sometimes they are the second and third most important words, followed only by LOVE.
    Where the rubber meets the road......