Happy Birthday Mom - My Amazing Journey as A Caregiver

August 3rd was going to mark my mother’s 66th birthday.  However,we lost her in April to Lung Cancer.  I wrote this post to commemorate her passing and the indelible mark she left on my life.  I hope his gives a small measure of hope to those who are caring for, or have lost their parents.  Although at times you may feel alone the memory of those loved ones carry you each and every day. 

The title of this post was supposed to be “remission”, but that wasn’t to be.  I was looking forward to writing about how my mom fought lung cancer and won how her combination of humor, strength and unflinching faith helped her win this battle.  But unfortunately, those words, I'm unable to write.  She passed away April 11th, and this week she would have celebrated her 66th birthday.  So this week I tried to celebrate her memory and all the happiness that she brought.  The journey to get to this point was both agonizing and amazing. I was officially a caregiver for 736 days , 105 weeks  100 doctor visits 15 trips to the emergency room and countless hours just thinking about all the ways I thought this was so unfair.

“There was something wrong”

When she went in for emergency gall bladder surgery in April 2014, something told me there was more going on.   Just a feeling you get that you can’t quite place.  Days after surgery we knew.  Her problems breathing were a result of an aggressive form of  lung cancer, she was in Stage 3.  The doctors advised moving quickly and aggressively with treatment.  From the beginning she was all in, “I’m fighting this and I know I’m going to win”. That was the message I heard every day as she labored with chemotherapy and debilitating radiation.

“Strength”

My pain was like a slow burn, I was watching the person who had taken care of me and always been there for me suffer from a debilitating condition.  She had just recently completed her PHD and was looking forward to teaching, traveling and taking care of those people lucky enough to be part of her extended family.  But I was careful never to allow her see me hurting. It’s amazing a mother’s capacity for caring even when they are suffering.  I held it in, for the most part, but somehow I think she knew (mother's know everything don't they?).

I was strong, except for one very lonely night when we found out the cancer had come back after intense treatment and her oncologist started to discuss “getting affairs in order”  the words were ominous and would sting mom, who rejected such talk at every level.  “I plan on being here a while” she defiantly told the doctor.  That night I sat in my kitchen at a counter and placed my hand in my head and just let go…It was only one of two times that I actually broke down during the entire 2 year period.

There were a few things I had a tough time doing;  I never could do the Lovenox  (blood thinners)  shots in the stomach, I couldn't even watch her shoot herself. When she asked me to get clippers to cut her hair that was falling out due to the radiation treatments It took weeks for me to relent and finally do it.    I learned how to perform a plural effusion (draining fluid from the lungs) and did those often.

I knew I inherited the strength to fight through adversity from my mom, and I knew if she was being strong through everything she was going through, I had to be even stronger.  But I truly recognized real strength during the last 6 months of my mom’s life.  It was around that time we learned she would need chemotherapy for the rest of her life.  I then decided to leave a demanding job and devote as much time as possible to helping her fight. I had pretty much dismissed my own stress, but it was visible in every area of my life, but this wasn’t about me, I needed to eliminate everything that stood in the way of me giving her the best care possible.

Each time we received a bad report she took the news of the cancer coming back the way she always had and asked “what’s next?” Giving up was never part of her makeup.  She asked me what we should do, I replied, “as long as you’re fighting I’m fighting”.  Strength comes from a combination of faith, a steel reserve, and experience that tells you sometimes the only way you win in this life is to fight on through whatever it brings you.

“Always Caring For Others”

Throughout her fight she never changed  when it came to caring for others.  And she never lost  her ability to deflect and shift the conversation from her to you.  When I told her she needed more rest she quipped “You’re looking pretty old are you sleeping,maybe it's you that need rest, all i'm doing is laying down”.  She joked that she wanted to send me away on a trip so “she could get some rest “.  She never lost her sense of humor or her compassion for others.

Even as the times she could talk to people on the phone became limited due to her limited lung capacity, she still never stopped trying to take care of me (or make me take care of myself).  She knew I was worried and mentioned all I had "given up" often, and how somehow I had saved her life by helping her fight the cancer and being there.  She was always aware of the toll her illness took on others.

She was a favorite in oncology chemotherapy center because she brought the nurses jewelry and her signature jewelry box gift she would give to close friends.  She even brought them copies of her fiction book.  One nurse confided in me that if more patients had my mom's attitude that her job would be so much easier.

“The Fight Ends”

After returning from a trip in February we were at a pivotal point in treatment.  Opdivo was the hot new cancer drug that had received great reports and had been pushed to the market to become a regular treatment.  Unfortunately it didn’t fight off her cancer and we were left with very few options.  What had become an increasingly painful ordeal reached its peak.

It was after another conversation with her doctor where she informed me of the inevitability of the situation . This would be the beginning of her decline.  I decided this  this year, I was really going to focus on the happiness, connecting with friends and family and giving one big celebration in August for her 66th birthday which in all likelihood may have been her last.  It wasn’t to be.

In April she suffered a collapsed lung and subsequent treatments were ineffective.  She drifted into unconsciousness and left us on April 11th, three days before my birthday.  So here I am, writing this on Aug 3rd which would have been the big day.  Always missing her and learning to live without her.  My good friends who have lost their moms have provided me with amazing support. My father has been amazing as has the rest of my family.

One of those friends, Kevin Whitaker said it best, “Your mother is the one person in this world you can go to know that they always have your best interests first, there is never any question.”  That summed it up for me, the person always praying for, hoping for and cheering me on was gone.  I’m left with amazing memories and a lifetime of learning how to be a better person.  That’s what lives on, in me and in everyone she touched.  I never saw myself as a “caregiver” because for all of my years on this earth she had given me all the care and love in her heart.  I was simply paying back what she had invested in her only child.

The “After…”

The postscript is still being written, each day brings a new challenge and I wish I could say that I’ve faced each with grace.  I’m angry, reflective and at peace, sometimes all within a 24 hour period.  I’ve suffered great losses this year personally and each one comes with its own set of pain and complications.  Every plan I made for the month of August was shattered.  At times I’m completely empty and feel the world coming down on me.

Each month on the 11th marks a dark period for me, as another 30 days have been deposited into my memory bank of grief.  There have been moments of calm and clarity from out of nowhere .   For a brief moment the night of the 3rd while driving, I felt a calm come over me as I contemplated writing this post.  A small voice quietly said, someone will need this and will need to know that its OK to hurt, its OK to feel pain, but happiness can and will be found in the memories and the legacy that lives within us. You honor lost love ones by sharing the values that drove their lives.

So Learn, Love, Forgive, Forget, Dream, Do, Experience, Grow ..in a word Live, mom did it every second she spent on the earth.

Happy Birthday Mom..you’ll always be a part of me...

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    Happy birthday mommy! I love you.

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