A Day in the Life of a Caregiver.

I sat down to write about a day in the life of a caregiver. I thought it would be easy. I could talk about a regular day and be done with it. But the truth is, I don't have regular days and irregular days. I mean, sure there are some days that appear like any other day. To the untainted eye this would seem so. However, they aren't, because being a caregiver doesn't just change your day to day life but your thought processes, your schedule, and every decision you make. What changes is the details, and much of that happens in the unseen parts.

It took me a long time to connect with being called a “caregiver.”  It felt like some kind of honor I wasn’t deserving of.  I felt like I had been given the label “mother” without having to go through the hours of childbirth and months of pregnancy.  I just didn’t fit.  It wasn’t until months after my mom’s original prognosis that I felt ok calling myself that.  And even that didn’t happen overnight.

Perhaps this came from a place of obscurity in the word.  Even now if someone asked me what exactly a “caregiver” was, I wouldn’t be able to put it into words. 

Cancer effects your entire way of thinking.  Especially terminal cancer.  I can’t just go about my business as usual.  With every holiday, there is the question of whether it will be the last holiday.  You want to make it especially good but you don’t want to make a big deal out of it.  A big deal means more stress and more stress added to an already stressful situation can cause an explosion or implosion.  And when that happens, it is far from good. 

How do we live our lives like normal, but still embrace the idea that life is short?  None of us are promised more than this next minute.  It is a concept that I have been struggling with for ten months now.  Though I know I look as though I have come a long way, I feel as though I have not made any stride in the right direction.  Perhaps that is because I don’t know which way is the right direction.

From the outside, the caregiver would appear to be the person who brings her to her appointments, makes sure the bills are paid on time, cleans up vomit in a desperate time of need.  I am all those things and so much more.  The caregiver is the person who sees the symptoms in between the good and bad and learns to hone those skills to be able to see a warning sign early on.  The caregiver is the person who cries with her when she receives yet another bad report, laughs with her when she is loopy from medication, prays with her for miracles, prepares for the opposite, yells at her when she needs to take a break, and holds her hand when all is well for a while.  

I searched and searched for some book on the matter.  See, one of the ways that I learn best is by reading.  What does it mean to be a caregiver?  I couldn’t find a good one.  Not one.  I couldn’t find one that wasn’t riddled with terrible clichés meant to work for anyone going through a rough time.  It is because there is no way to put into words all that goes in to caregiving.  It is both the most challenging and best thing I have ever had to do.  Although it has been the hardest thing I have ever experienced, I wouldn’t give up these past few months for the world.  And that, ladies and gentlemen is the true meaning of caregiving.  Speak Life, Choose Joy, Live a life abundant.

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The Words You Never Want to Hear

Words are a strangely powerful thing.  I am strongly affected by words.  Think of how important it is to hear the words “I love you” on a regular basis.  It is so much a part of our culture that we often say it every morning, every night, and every time we leave the ones worth saying it to.  I personally am glad we say it as much as we do.  Life is short, and love is important.

Now, imagine hearing over and over again that you are going to die.  Imagine hearing at every possible opportunity that a doctor has, “We aren't fighting to cure, but only to elongate your life and keep you comfortable for as long as possible.”  Just imagine it. 

Recently, the doctor said two words that generally would be characterized as bad.  “It’s spreading.” In the cancer world, hearing “it’s spreading” is almost never a good thing.  However, this is a good story.  I promise it ends well. 

Meet Regina.  Regina is a wonderful German woman who has lived all over the world.  She has pancreatic cancer and is celebrating the last of her chemo appointments soon.  Regina saw my mom and me when we were dressed in Hawaiian skirts and leis a few weeks ago.  She crossed our paths but we didn't get the chance to meet her at the time.  She felt quietly inspired to join in and choose joy.  When we finally did meet her, Regina was dressed in a vibrant green tutu with a matching green wig.  It was at that moment that our doctor came out to us and said “It’s spreading.” He was talking about the joy!  The joy is spreading! 

Regina put it this way “We can’t always decide what we go through, but we do have a choice in how we go through it.”

As a person fighting terminal cancer, or in my case the caregiver of a person fighting terminal cancer, there are a few things that you don’t want to hear the doctor say.  In a perfect world, we would never have to worry about those things.  This is not a perfect world, and I guess my belief is that we can only do our best with what we are given.  I believe that we can reclaim what is said and sometimes even change it for the better.

Recently my mom heard some other words that you never want to hear.  “We are running out of options.”  The all-encompassing “we.”  I use it all the time.  “We have chemo.” “We have a doctor’s appointment.” “We are trying a new drug.”  At first, I felt very conscious of it.  I don’t have cancer.  Is it offensive to say “we?”  Wouldn’t it be more accurate for the doctor to say “you are running out of options?” And here’s the thing.  Cancer is all-encompassing.  It effects everyone: family, friends, doctors, and even my coworkers.  Cancer not only turned my mom’s life upside down, but mine too.  It’s not offensive to say “we,” it’s almost necessary.  So the statement stands, “we are running out of options.” 

How can we reclaim that though?  Currently, we are on a break from chemo because my mom's numbers were rising.  No chemo means no dressing up.  Are we “running out of options” there too?  

We don’t want to be!  We want to continue to choose joy and show the world our choice.  I keep going back to my mom's original thought "If my silly little story can inspire others, it makes this just a little less hard."  We want to reclaim those words!  Help us to know how!  Comment below with your ideas!  Speak Life.  Choose Joy.  Live a life abundant.

The Story Behind the Hashtag

What compels a couple of grown women to dress up in wacky costumes and waltz into a hospital like it is nothing?  Well, I will tell you, the story is probably much simpler than you would think. 

It started on a morning just like any other.  I had woken up, showered and gotten ready for my day.  Every morning right before I leave for work, I check on my mom.  I check to make sure that she is still breathing.  And so far every morning she is.  On this particular morning, I looked into her room and noticed that she was awake.  I meandered towards her and sat on the edge of the bed concerned.  She told me she was having trouble breathing and experiencing a lot of chest pains. 

One of the hardest things about being a caregiver is the uncertainty.  Of course there is the given uncertainty of how long she will live.  But in addition to that, there is so much more.  Take this instance.  Here I am, sitting on the edge of my mom’s bed with the problem of chest pains.  Any normal person knows that chest pains aren’t something to take lightly.  But what do these chest pains mean?  Did a part of her lung collapse?  Does she have a blood clot?  Is it just simple heart burn?  Should I make a big deal about it?  Should I call a doctor?  She we call 911?  Should we ignore it and go about our day?  I wish I could say this part gets easier, but it is a constant struggle.

For any other caregivers out there who may be reading my blog, I do not have any suggestion of what is the best way to handle this.  However, I can tell you what I do.  I take a deep breath.  Sometimes five or six.  Then I pray. 

Our story picks up later that day at the hospital.  We had called the doctor, been strongly encouraged to come in and as a result had gone through a bunch of tests.  My mom had been wheeled all over the hospital, me waddling behind with an armful of purses and things needed.  Since we didn’t have a scheduled appointment, we were actually hanging out in the lobby area of the cancer center to hear what information the tests would reveal.  The nurses would occasionally stop by to take vital signs, check her temperature, her pulse, breathing rate, etc.  Every time a nurse came to check anything he or she would ask for my mom’s name and birthdate.  Having been through a slew of tests that morning, my mom had been asked those question at least a dozen times.  Since she was transported from one wing of the building to the next so many times, someone, I can’t honestly remember who, had given her a stack of labels with her information on them.  So that with each new test, she would have the same hospital number and information.  The label included her name and birthday, hospital account number and a bunch of other numbers which I haven’t the faintest idea of what they meant.

Let me do my best to paint a picture.  At this point, my mom doesn’t feel well, has been all over the hospital, had a bunch of tests done, and is waiting to hear what is wrong with her.  She has a fever of over 101 and her blood pressure is 88 over 26.  She was just over it. So, in a moment of sheer defiance, my mom took one of those labels, peeled off the sticker, and stuck it straight on her forehead. 

This was the beginning of “Operation Choose Joy.”  I looked at her with that label on her head and I laughed.  Then every time a nurse or doctor came to check on my mom, they laughed.  They laughed!  So, I joined in.  I grabbed one of her labels and stuck it on my forehead too.  And all of a sudden, this day of stress switched gears.  It stopped being about my mom, and how crappy it was to spend the day in a hospital lobby.  It turned into an opportunity to make other people smile. 

For those of you who need an ending to this story, I will tell it quickly.  It was pneumonia that was causing my mom to have trouble breathing and chest pains.  We spent about a week in the hospital and she had IV antibiotics which got her over that hump.  But the bigger picture is that our “Choose Joy” mindset was birthed. 

Now, every time we have a chemo appointment, we try to think, how can we make the nurses smile?  What can we do to turn this from being about us?  How can we choose joy?  Usually the answer ends up with us in some sort of silly costume with something sugary or full of caffeine to offer.  We did not set out to be internet sensations or find out how many likes we could get on a specific picture or views on a certain video.  We simply want to spread joy.  And as my mom puts it, “If our silly little story can spread a little more joy, and inspire others to not give up, then that makes this all just a little less hard.”  So I want to encourage you to do the same!  Maybe that means something different for you.  We don't all have to walk around wearing a clown nose!  But, how can you choose joy today?  Think about it.  Speak Life, Choose Joy, Live a Life Abundant.

Death and Life: The Immediate Game Changers

I was zoning in and out of a communication planning meeting at work the other day when my supervisor said something that brought me back and made me really think.  We were discussing making a change to something that had been done a specific way for a long time.  The person who normally advocated for this particular thing is currently out on maternity leave.  She just birthed a beautiful 8 pound baby girl named Grace and is settling into motherhood off away from work for the next few weeks.  We were jokingly discussing whether it would be underhanded to make the change while she was out since she wasn’t there to advocate for it.  My supervisor mentioned that it wouldn’t matter.  By the time she came back, my supervisor expressed, her perspective would have changed.  The things that once seemed important, like this silly communication process, would no longer hold a place in her heart.  She went on to say that this was the way it was for her when she came back to work after having a baby. 

After it was said my mind went off down its usual rabbit hole, missing pieces of the meeting but not really caring.  I was thinking about how hard changing our ways is.  Most of the time change is a slow process.  It happens over time as we develop new habits, using discipline to mold our ways.  It almost always takes a long time. 

As I thought more about it I realized that there are two exceptions.   Only two things can really bring immediate change in our lives.  Death and Life.  The example I used from above is perfect.  A new life has the potential to bring about change in someone who was unwilling to change previously; because life makes one see things differently.  She has a life in addition to her own to take care of, and she has a new life as a mother. 

It made me think about how we felt when the doctor told us that my mom had an estimated time left to live.  There was a looming expiration date over her life which represented death.  And guess what?  We changed.  We started living our lives differently.  We daily choose joy because life is too short to live it any way else.  The two of us brought truth to a cliché that you will live better when you know you will die.  We changed our lives for the better, but many who experience death change for the worse.  And even though it is often immediate, it’s usually hard to change back as quickly.

Both of those examples are very literal with a physical human life and physical human death.  But, when I contemplated more, I realized that it didn’t have to be literal.  Think of all the times that other forms of death and life have brought immediate change.  I had a vision of a disappointed child being told they aren’t good enough, causing death to a dream they had, and hardening of a heart which immediately changed their perspective.  Or a college student graduating with a degree, the prospect of new life bringing an immediate change which fuels them for the road ahead. 

Death and Life are powerful things.  Not just in the sense that they are a beginning and an end.  But more specifically that that beginning means change and that end means change.  I would even go as far as to say that any monumental immediate change you have experienced in your life can be traced back to new life or death in some shape or form.

Maybe this is old news to you.  But, the idea did make me realize how important it is to speak life over myself and my mom.  Because life is one of the only ways to bring immediate change.  I encourage you to do the same.  Speak Life.  Choose Joy.  Live a life abundant.