A Caregiver's Point of View

June 15, 2012 in the Yellow Room

Watching over someone you love, whether a spouse, a family member, or a dear friend, as they are diagnosed with serious illness is not in the life plan of anyone I know.  However, when you are chosen, or put into the position of being a primary caregiver, it's a responsibility you take on with no questions asked.

These are only some of my observations and opinions based on the ongoing experience I'm having in walking  the journey with Susan. I offer some of the things I'm learning along the way that are making it easier for both of us, with the hope that it will help anyone else in the caregiver position.

Overcoming Fear:  One of the first things we learned from Dr. Akoury was how to overcome the fear of the cancer. No matter what "kind" of cancer, or it's location, we learned not to give in to our fear of it. We have been conditioned to panic at the word "cancer" and immediately think of a death sentence, or how long do I have to live. Erase the negativity surrounding the word and the disease, and replace it with positive emotions, prayers and thoughts. Our bodies have miraculous powers to heal that many traditional medicine practices have ruined with man-made drugs, and doctors giving patients an "expiration date."

Respecting  her decisions:  It's ok for me to offer advice and opinions, as long as they are based on knowledge, but I don't have expectations that she will always take what I have to say and do it. We have had open discussions on everything about cancer that we know. Most things we are in total agreement on, but Susan is in charge and has made the decision to take responsibility for her care and treatment. I'm here as backup to support whatever decision she makes, and what she needs, whether I agree or not, doesn't matter.

Self Education: If you know it, you won't fear it. I've learned more about cancer than I ever wanted to, but the most important lesson was how we create an environment within our bodies for cancer to make a home. Along with taking a reactive approach to the disease, we also learned how to be proactive and prevent the spread of it, (much like we have been trying to do within the domestic violence arena!) and other factors which contribute to the likelihood of allowing cancer to grow in otherwise healthy bodies.

No Stress Zone: One of the major contributors to cancer, along with heart disease and other ailments, is stress. One of the most enjoyable parts of the treatments that Susan receives is the beautiful facility created by AwareMed. You are immediately welcomed into a space of serenity and peace, not a sterile atmosphere with stress inducing sounds and antiseptic smells.  What we see, hear, and smell is welcoming, beautiful and relaxing.  Susan is encouraged to turn down the lights, lie back in her chair, close her eyes and concentrate only on healing herself. It doesn't always happen,(you who know her, know how she loves to talk!) but when it does, she's much calmer and clearer. Learning to not worry about what will happen, how it gets paid for, and making the best of the situation at hand may go against the grain of Susan's personality, but she is trying like the trooper she is, and will emerge stronger and mightier.

A Doctor With Passion:  When Susan first started feeling bad, like something was happening within her body that just wasn't normal, we researched several options, and several doctors.  I must say that her choice was right. Immediately feeling the connection between, not just doctor and patient, but two minds on similar missions, saving lives, it was exciting to see the future unfold between them.  Utilizing the talents and gifts each of them have, together they are more powerful than apart.

What About Me!  The really cool thing about this experience, is I don't feel left in the background to fetch things, run errands, and then be dismissed.  Dr. Akoury has made a huge point to keep me included in every step of her treatment of Susan.  We all laugh, we cry, we hug a lot and we talk about what is going on, what is going into her body, what to expect, what kind of progress we see and what's the next step. I've learned that I must set the tone with Susan and her care, along with the staff at AwareMed who answer every question. (and I ask a lot!) I feel less stressed and worried about this situation than I ever thought I would.

People Really Do Care: The decision to go public with this blog wasn't an easy one, but once Susan made the decision, she realized that it may be another avenue to help people. Only a week ago was her diagnosis announced, and the outpouring of love, prayers, cards and donations has been overwhelming. Truly, it brings tears to her eyes. She has a hard time believing that this many people really care about her. She wishes she could answer every email, phone call and text she receives, but there just isn't enough time in the day. Each and every person is important to her, believe me, she will find a way to respond to each one of you in time!

This is only a part of what I've learned in a very short period of time!

I can report that there have been many positive changes happening already. Yes, she has good days and bad days, but the good ones are starting to occur more often. Yes, she tires easily, but she's learning to pace herself and learning about prioritizing and living in "the now." She is improving, but, like the sunrise and sunset during different seasons, we don't often see every little millisecond of change.

If there are topics or questions that readers of this blog would like to see addressed in future posts, please let Susan and I know.  She wants this blog to be a teaching tool as well as a place to share her experience with the world. The gratitude towards each of you is immense.

Delilah xoxox