A Caregiver’s Journey

The goal of this article is to share my insights with other caregivers from my lengthy experience serving in this role. If this article helps only one person, then it was worth sharing my soul. My wish for all who read it is that you find it informational and perhaps uplifting.

As I begin to write about this caregiver’s Journey, I am astonished by the reality of what an awesome experience this has been for the past 17 years and counting. It has been a wild ride with my adorable husband of 47 years who is definitely the sweetest, virtuous, and most courageous man I have ever known (. . . and yes, I am biased)!

Not to say that we have not had our ups and downs—for we have. Since we truly love each other and are committed to making our marriage work, we have accepted each other’s faults and have been able to build our relationship instead of abandoning or destroying it. We have experienced so many emotions: fear, anger, resentment, despair, frustration, sadness, joy, happiness, relief, awe, hope, and trust in ourselves and in our Higher Power, whom we choose to call God. In the early years of my being a “Carebear” for Rusty, [I] used to fight back and [he] would respond in kind; now, since he is so advanced in his disease and has severe Chronic Obstructive Pulmonary Disease (COPD), I work very hard to just let it roll off my back because it serves no purpose to get upset. I slip up many times because I get so frustrated and tired, but I am trying one day at a time. I am no saint; I am very human, but I am trying to earn my angel wings through this loving experience!

In my opinion, I believe there are four basic things you need to have to be a great caregiver or Carebear (I use this word because it sounds warm and cuddly):

1. You need to have your health above all, if you are to care for another special person! If you compromise yourself and your well-being, then how can you be a good caregiver? Believe me, I know from experience what happens when you run yourself into the ground! You end up defeating the whole purpose of what you are trying to achieve, and the health and well-being of your loved one goes down in flames. *You are NOT being selfish, you are taking care of you so that you can help your special person. This is a requirement, NOT an option.

2. You need to LOVE the person you are caring for. If you don’t, you must “act as if” you do and convince yourself to “fake it until you make it.” This caregiving will take every fiber of your being to do well! *Remember, only live it 24 hours at a time and by seconds, if necessary!

Here are a few key qualities you should acquire:

• Faith that your Higher Power will give you the strength and the courage to choose this vocation each day.

• Patience with yourself, the person you are caring for, and others with whom you interact.

• Perseverance in every action that you take whether it be speaking to doctors about medication or getting information to try to improve your loved one’s health and well-being.

3. What are the “pitfalls” you may encounter and must overcome to be a great caregiver (not perfect but progress, while gaining a real learning experience)?

• Try to listen to what people are telling you, and if it sounds critical and personal, try not to take it personally. Instead, hear the message and try to think about it before internalizing it emotionally. *This is very hard for me to do, and I have learned over time that it is not really about me, it is about taking the best care of my husband that counts!

• Avoid going into a doctor’s visit or a test without having your questions/concerns written down! Do not be afraid to ask your questions or state your concerns. I learned again through experience to let the doctor know upfront that I need to ask questions and to advise me in return. It works out very well!

• You must become a real advocate for your loved one. This takes research about the loved one’s condition, consulting with doctors and therapists in a calm and collected manner, and the courage and commitment to ask lots of questions and get second opinions. One thing I learned early in this game of life—if I was in a doctor’s office and started to ask questions and the doctor or specialist became defensive, that is, act like I was supposed to never question his authority, then his or her ego is out of control, and you need to smile sweetly and find yourself another doctor. With the Internet and excellent hospitals in our area, this task is not as daunting as it used to be.

4. What can this caregiving journey give you and your loved one?
The meaning [of] “this journey” is largely dependent on what you put into it. IF you put yourself into this experience with your heart and soul, you will become a much better person; you will have a very fulfilling experience, and you will have the sure knowledge that you have done your best—one day at a time!

Your love for your special person will flower and bloom with bright colors and a sense of hope, strength, and a real sharing of spirit.

I am a more patient, compassionate, and understanding person. I have found out who I am and that I am not alone in my struggles; my Higher Power, whom I choose to call God, is with me and will be with you in this greatest challenge of your life. He is always with me to support and love me no matter what the circumstances. I am indeed a blessed and fortunate woman!

My husband will eventually lose his battle with Parkinson’s and COPD, but we know not when or if I may still be here, so I cannot live in that fear—instead, I will live in each moment and squeeze out every bit of joy and happiness that I can. And so the journey continues …

Julie Ann Rhodes