Ode to Caregiving

My heart has been heavy lately thinking about all of the other people in my expanded circle of friends and acquaintances who are struggling with cancer or other lingering health problems.  Many of them are caregivers to the sick.  Spouses, siblings, grown children, all of them trying to be strong for the sick while working full time jobs, raising children, and dealing with their own life problems.

There was a time in my life when I too was a caregiver.  It was at a time in my life when I was working on the weekends, home schooling preteens, all while juggling my concerns and often preoccupation with my husband's issues.  It was tough, trying to raise children and be compassionate to my husband's darkest days.  It wasn't until my care-giving ended that I realized how exhausted and depleted I felt.  

Several years ago the script was flipped and I had a major injury to my leg.  I would have been up a creek without my husband and sister.  I was not a good patient.  In the beginning I'm sure they both wanted me find someone else to do their jobs.  I was angry at my loss of independence and I am sure I made their lives hell at times.  We all managed to survive and I became very grateful for all they did to help me be comfortable and take care of me..  

Fast forward to the present.  I must say I'm thankful to not be trying to raise children or maintain a marriage relationship during this cancer journey.  I can't imagine I'd have too much too offer given the fact that much of the time I've been looking at life from the lenses of Stage IV Kidney Cancer instead of the reality that I am still very much alive.  Living with my sister has been a blessing and I've been very thankful for her help.  She works full time and would never be in a position to be a full-time caregiver.  

The truth is, caregivers are thrusts into their roles with little regard to their life's issues.  Many have had to give up jobs to stay home full time to be help and transportation for loved ones.  Others are working full-time torn between responsibilities.  As a telephone triage nurse, I could hear the frustration in a spouse's voice as they tried to coordinate appointments and work schedules.  I remember trying to encourage them to remember to take care of themselves.  Adult children trying to manage mom or dad while living hundreds of miles away meant frustration for everyone.  Absent caregivers would often call the office wanting to know about a recent appointment or the plan regarding their parent and then grow frustrated that other important issues weren't addressed.  Care giving is a tough, thankless, difficult job.  

If you are a cancer patient, I understand how it feels to live expectantly from one scan to the next, never feeling sure about the future.  No matter how compassionate your caregiver or health care provider thinks they are, there is still so much they don't get about having a cancer diagnosis. A mentor of mine used to say "Feeling bad isn't an excuse for bad manners"  That's probably easier to say than do at times when you have cancer.  However, having cancer isn't a license for being hateful and mean to your family and those you love.  Talk to a counselor, pray, journal, but lashing out because you have cancer is only going to make you feel more isolated.    Nausea, vomiting, pain, diarrhea, on and on the symptoms go.  But when its happening to you, it feels like constant reminders that you are "sick."  When you  haven't known a lot of sickness, most of these trivial sounding symptoms are anxiety producing.  You want them to stop immediately!  Initially I wanted to make sure someone knew how miserable I felt.  Surely this wasn't "normal?" I gained a much deeper understanding of why a telephone triage line is so important.  It's the reassurance that everything is going to be okay and the moment will pass, even though you don't feel like it now. Remember that they had a life before you got ill and have chosen, maybe by default, to lend a hand at this difficult time in your life. 

Thank your caregiver!  Write them a letter and let them know you appreciate and see all they do and all they sacrifice on your behalf.  They want things to be different.  They want you to feel better.  They too wish everything would magically go back to the way it was before the cancer or illness. They have to practice living now, because it's the current reality.  They don't punctuate talks of the future with "if I'm still here." So Barbara Starr, thank you for making time in your life to help me when I need it and allow me to just be without the pressure of expectation.  Your love, companionship and loyalty are priceless.  You mean the world to me! To my dear friend Lynn, who has made it her business to be on stand-by for appointments, errands, and everything else, thank you my friend.

If you are a caregiver, God bless you!  Truly you have a difficult job.  You maintain a home, the laundry, meals, transportation, encouragement, and normalcy for your loved one.  It's easy in the beginning to be compassionate and understanding with the cancer patient, but let's face it, there are days you feel like screaming.  It's easy to completely lose yourself because you've become so involved and wrapped up in  the cancer patient.  Stop!  You are a separate entity.  You have to take time to replenish yourself.  Go to lunch with a friend, get a haircut, go shopping, take a nap, whatever it takes to recharge and think of yourself.  Don't feel guilty.  Loving and enabling become blurry lines in sickness, try to strike a balance.  There are days they do need a swift dose of reality about the blessings in their lives.  There are also days they may just need to be quiet with their emotions.  Many times there is anxiety and fear about the future, no matter how much you tell them God is in control.

Caregivers are vital and they deserve more than could ever be repaid them.  We know that the world didn't stop when we became ill, even though you can't always tell by our actions.