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A hug is duct tape for the soul.

 
The 2nd post on caregivers from our guest blogger, Viki Kind:
As caregivers, we do our best to make good decisions for our loved ones and to keep them included as much as possible in their own lives. But to really understand how our choices are experienced by the person in our care, it is time for you to trade places with the person you are caring for and to consider the world from his or her perspective. If you can, have someone else read this to you slowly, so you can close your eyes and truly put yourself in your loved one’s shoes.

Imagine what it would feel like to have someone else be in charge of your life. You don’t get to decide where you are going, how you will get there or what will happen when you arrive. You have to do things on someone else’s schedule now. How would it feel to know that you are have lost control of your life?

You are still the same person, but somehow different. You try to remember things, but you know you keep forgetting. You try to speak but the words aren’t there. You can’t do the things you used to do and you feel helpless all the time.

Without your voice, you feel as though you no longer exist. You are at the mercy of others whether you like it or not. People treat you differently. They treat you like a child and don’t take you seriously. They speak in a sing-song voice as they would with a baby. When you do talk, people don’t listen or respect what you say. People talk as if you are not even in the room. You feel invisible. Just once, you would like to be you again.

Maybe you are in the midst of terrible grief. All of these losses are overwhelming, but nobody is willing to talk to you about your sadness. You wish that someone would listen to your complaints and let you cry about what you are going through.

You are no longer able to do things physically; you need help with the simplest of tasks. You have to wait until someone comes to help you to the bathroom, and sometimes while you are waiting, you can’t hold it any longer and you have to use your diaper. Oh my goodness. You are wearing diapers. And perhaps you can’t even feed yourself without someone’s help. Or maybe you can’t swallow and now you are fed through a tube. What would it be like to never taste food again?

Write down how you would feel if you had to cope with what your loved one is experiencing. Then write down what you think it is like for your loved one to be in this situation. If you can, ask the person directly what is the most difficult part of his or her experience. When you take the time to listen to and understand another person’s experience, it is an act of healing. Have a kind and respectful day.
Viki Kind is a clinical bioethicist, medical educator and hospice volunteer. Her book, “The Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can't,” guides families and healthcare professionals through the difficult process of making decisions for those who are losing or have lost the ability to think. She has also been a caregiver for many years for four members of her family.

You can visit Viki at her web site KindEthics.com.

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