Caregiver’s Learning-Curve

It has to be exponential.

Jim’s diagnosis was the most scared I have ever been.  I still don’t like to think back on that day.  For a couple of weeks, we were in a daze.  Everything was surreal.  I couldn’t watch the tv because none of that mattered to our lives, and I wanted to spend every second with Jim.  Then, Jim read Cancer: 50 Essential Things To Do, and he started to get his fight back.  Well, I had read the reports from his CT and PET scans, Jim had not, so for a while my thinking was that at least one of us had to be in reality.  That sucked.  I mean, really, he’s the one with cancer.  Who was I to anchor him down?  How was that helping anyone?  So, I changed my thinking to follow my husband’s faith and fight.

Now we were off to the races.  We were reading, passing books back and forth, I was searching the internet – we couldn’t get enough information about how to eat, think and survive quick enough.  It was frustrating to feel that the knowledge to survive is out there, we just had to find it – and fast. 

What I learned as a wife.

Jim has to have my complete and total support, and he has to know it.  In this situation, there were plenty of opportunities to show my support, from positive discussions, to becoming his personal secretary, to becoming his health advocate.  Any disagreements we had prior to his diagnosis got put in a file and shoved to the back of my brain to be worked on later because we have to save his life right now. 

I am in charge of food.  This is actually rather intimidating because malnutrition is a big problem for cancer patients.  We need to avoid feeding the cancer while at the same time, feeding Jim food that will heal and build his body.  In the beginning, it was like feeding two people.  Jim just couldn’t eat enough to gain any weight.  One school of thought was to have Jim gain weight by eating as many calories, of any sort, as possible.  We didn’t agree with that at all.  So, we now eat as many vegetarian/vegan meals as possible.  It was a little hard at first, and sometimes we eat fish or chicken, but we are getting better at it. 

What I learned as a mother.

Not only am I having to learn how to care for my husband, but I’m learning how to be a mom.  I definitely turned into a mamma tiger.  I was always going to be protective of Sarah, but I think it really kicked into high gear.  I made sure her life in year one was very predictable, but then year two was near chaos.  Parents and grandparents coming and going, and Daddy disappearing, but in the house.  I feel bad about that, but she is ok.  Maybe a little clingy to me and shy around others, but then again, that’s normal for year two. 

Sarah won’t let you hide your face anymore.  So, when it’s time to be with her I try to focus on her and make that time fun.  Some days it’s a lot harder than others.  We found daycare a few weeks before Jim’s surgery.  She hates being dropped off, but doesn’t want to come home either.  She plays better by herself after being at daycare, and that’s good for both of us.

What I learned about me.

At first, I kept thinking, “There is no way I can do this.”  Now I know I can do what has to be done.  You just do it.  The struggle is to do it gracefully.  I might not like it, and some days I can’t wait to go to bed, but I can handle it.  Things that use to scare me are nothing now.  And I actually can feel that I care less about things.  I had to give up my perfect little family image – that was hard. 

We live day-to-day, and sometimes hour by hour, never schedule anything very far in advance and sometimes those plans have to change.  Mentally, this has been a hard shift in my thinking because I was a very organized (several months ahead) planner.  Now I just make sure everyone gets to their respective doctor appointments.

What I learned as a caregiver.

You have to lose the selfishness, there simply isn’t room or time for it.  Oh, I still get really frustrated some days and act like a complete brat.  But, it happens less and less.  And it’s ok because it is what is needed for the moment. 

I learned how much I care about Jim and Sarah’s well-being.  It’s a deeply rooted feeling that I really didn’t know I had until it became threatened.  I will do what I need to so they may be as comfortable and happy as possible.

I have lost friends and gained friends since Jim’s diagnosis.  It is very hard to be the friend of a caregiver because their attention is so divided.  However, the friendships that have grown deeper and stronger will be there for life.  My friends will probably never know how much their friendship and kindness meant to me, nor how very precious I found it.

  1. jayne field
    September 6, 2011 at 9:23 pm

    Beckie, I have only this evening found this posting. It popped up at the top of a page I had never seen before. And I am so glad I found it.
    What an incredible sharing of your feelings from so many perspectives. You have a courageous attitude. I am always amazed when I finish reading one of your posts. I am always uplifted. You have a very special way of expressing your life with honesty and love.
    Jim and Sarah are two very lucky people to have you as their advocate, helpmate, soul mate, mother, caregiver and best friend. Know that I remain a faithful, concerned and caring friend. Jayne

    • September 7, 2011 at 5:14 pm

      Oh, you are definately one of those wonderful friends I gained through this experience. Sometimes I have some serious rewrites of the blog before I post it. 😉 Honestly, the blog helps me think the various situations through which really helps me come to terms with it. I’m constantly humbled that so many people care so much about Jim and want to read our blog. Thanks for your constant support.

  2. Joni
    September 6, 2011 at 10:34 pm

    Beckie, You will never know how honored you have made me feel in your reaching out to me. I have so many “hats” to wear as a pastor’s wife, mother, grandmother, teacher, musician, leader, worker that sometimes my roles consume my life so much that there is no Joni left to be just a friend to anyone. Everytime you share your pain or joy with me is so precious I can’t tell you because you are just talking to me….not one of my roles in life. Your time is so very precious. Thank you for being so real. Thank you for being so faithful. I love you.

    • September 7, 2011 at 5:26 pm

      I knew you were my friend the moment I met you. You amaze me with how hard you work to fit in all your “hats.” I have so much respect for you. I don’t know how you do it all. Even when you are overwhelmed, you maintain such a good attitude. Thank you for taking the time to just be my friend. Your loving ways must draw people to you like moths to a flame. I definately have a heart full of love for “just Joni” too.

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