I Am a Caregiver For My Soul Mate

I am very blessed that I married the love of my life.  My husband is my soul mate.  He has always joked with me that we were like peas and carrots.  I always said that God knew what he was doing when he introduced us.  We are in a sense polar opposites and what one of us lacks the other compliments.  We are very attracted to each other and my husband reminded just recently that his life would not be complete without me.   I feel the same, as I awake each day with a smile that he is still here with me.  He always tells me I am his angel.  I have spread my wings far and wide to help him through a difficult time with cancer.  A few times during his cancer treatment I wandered if he had an alien inside him that had possessed his personality and made him do strange things, and say things that were confusing, and sometimes hurtful.  Now that we are at a peaceful place in our life again,  I can see how blessed that I am to be in love with my soul mate for the past 38 years. 

Today I am writing about what it has felt like to be the caregiver of my soul mate.  I just read an article posted by MD Anderson about acknowledging a caregivers feelings.   The article was about a special lady named Traci Newsom.  She works for MD Anderson and she talked about the importance that caregivers have the right to be heard and cared for.  At this point in my journey with my husband, I would like to shout out, "Amen".  I am now able to speak about the pain I experienced as the caregiver of the love of my life.  I am no longer a shamed of feeling emotionally drained and alone.  I spent a lot of energy over the past years trying to tell myself  I had no right to be tired or hurting inside because I was not the one fighting for my life.  It is hard to admit that deep inside every day is a struggle.   Yes, I do have feelings.

The biggest obstacle that I have encountered as a caregiver is lack of my own family support.  I longed so many times to have had a mother or sister to support me.   I needed someone that would just listen and let me express my pain without judgment.  I needed someone who would let me cry without judgment and hug me. I have a few close friends who have been wonderful.  Other friends have been great support, but I often hide the pain I feel.  We put on a happy face, because we don't want anyone to see all the worry and day to day uncertainty that cancer brings into our life.  I feel that everyone has their own problems in life, let alone they take on our sadness.   As a parent, I feel like I should shelter my darkest fears from my own children.  I was taught as many of us are, that as a parent we are suppose to be strong and protect our children from our burdens. 

When my husband was going through treatment at MD Anderson in Texas,  I attended support groups for well wives.  It was interesting to hear others express that they too had a hard time deciding what to tell their children about their spouses medical problems and the heartache they both were experiencing.  This applies to children no matter how young or whether they are grown ups.

The other tough thing for me while attending the group meetings was seeing other women bring along their sister and sometimes mother for support.  It always made me yearn to have someone's shoulder to rest my tired head upon.  I needed someone that I could tell that I was tired and hurting very emotionally.  You don't want to tell your spouse, because they are using all their energy to get well.  The overwhelming guilt of yourself being healthy becomes a shameful thought in your mind.  You want someone to tell you it is alright to hurt and be scared.

I tried to get a referral while living in Texas to attend a group that was run by a psychiatrist.  I was told she helped spouses deal with all the emotional pain.  I was never able to attend the group after making several phone calls.  I was told I would have to be on a waiting list, my name was added and an e-mail address was taken.   No one ever followed up and I later found out that some other people had been left hanging in limbo also.  I did however keep attending another support group just for the comfort of knowing that others were dealing with the same feelings.  I can tell you that even in a group of people dealing with similar situations sometimes you still feel all alone.  It is especially hard also when there are new faces every week.  With the multitude of people coming and going at a large cancer center, it is hard to connect emotionally with anyone.

As a result of all the emotional pain, I became withdrawn and quiet.  The complexity of  life changes that cancer brings is very overwhelming.  I began to feel like I was no longer a participant in my husband's treatment.  I no longer felt I had a voice.  It was a scary feeling to face so much uncertainty in life.  I reminded myself everyday that I had to be strong for my husband.  I cheered him on and prayed everyday for God to give me strength to keep smiling for my husband.  I have to admit that at times I just wanted to run away.  I wanted my husband to run with me.  I needed my healthy husband to run with me. 

Today I see my healthy husband before me and he would gladly run with me.  He has wrapped his loving arms around me and thanked me for holding onto life.  We still struggle daily with the uncertainty that cancer brings to our life.   We are stronger after all we have experienced and closer, because we did not let cancer take away the love we have for each other. 

We are still facing financial issues from all the medical debt, but we both are in a healthy state of mind these days.  Together we are moving forward to make some positive changes in our life.  I have always said two heads are better than one and if plan A fails there are 26 letters in the alphabet.  If you reach the end and all has failed, then lay down your sword.  Stand up and start climbing the mountain again, and if you have to ask for help accept it with love and honor.  The view from the mountain top is beautiful! 

Loving you my husband was the easiest part of our journey.  The uncertainty of life is the hardest.
I love you always and forever !!

Life is beautiful!!

Elizabeth:)