The medically-minded caregiver.

I am inspired today by a professor of mine who has created an informational and open blog about his cancer diagnosis.  He is using it as a teachable moment, and by doing so has touched people all over the world.  You can check out his blog at: http://dbocancerjourney.blogspot.com/  to learn more about his journey.

I don't anticipate reaching nearly that many, but hopefully some of my closer friends who are medical professionals can take note of this blog post for when they are caring for their own family members.  There is a huge burden of expectation placed on the medical professional who is also a family member of an ill person.  In my case, the burden is primarily self-imposed, but it is also evident in interactions with mom's care team.  As a medical student, I am constantly afraid I am missing something medically with my mom.  I feel this way because I am the person most present in her life, and I know (a little) about the human body and the normals and abnormals of disease.  It is probably also because she is such a unique case (her age, her presentation, her progression).  If her pupils look funny or her gait has changed, I am immediately trying to figure out what has gone wrong.  It is a painful and taxing process.  I am sure this is the case for anyone who is in the medical field and simultaneously caring for a loved one.  You know about the mistakes made everyday in medicine.  You know all too well that doctors are incredibly fallible.  You want to protect your family member from medical errors, polypharmacy, neglect, and misdiagnoses.

For me, I am always worried we have missed something big.  That there is an underlying process causing mom's illness that could have been stopped.  That when we do a post-mortem on her we will find that if we had only done _____ test we would have been able to save her memory, that I would have had her for 20 or 30 more years.  It is a painful burden to feel this way, but I am certain that I am not alone in this feeling.

Probably the most important piece of advice I have ever gotten was from a physician friend when I was talking to her about my feeling a loss of control in mom's care.  I sat down with her and was beside myself with grief.  I explained my fears that mom's care team was missing something.  That because she had been moved so much and had been passed off by so many, I was certain she was falling through the cracks.  I told her that I felt like it was my fault that this was happening because I am mom's advocate, her constant in this fluctuating process.

This was when she gave me the very best advice I could have heard at the time: "You can't do everything, Mariah.  When you are the family member of a sick person you must check your medical degree at the door and be the family member.  You cannot try to figure everything out because in the process you will drive yourself crazy.  All you can do is equip your mom with the very best medical team, and step back and TRUST them.  It is NOT your fault if something goes wrong in her medical care, it is NOT your responsibility to catch medical errors, and you can't control everything."

Medicine encourages perfection.  It pulls in people who won't settle for anything but the very, very best. Combine that with the love of a family member, and even more importantly the love of a parent, and that perfectionism runs rampant.  It is important to give to your loved ones, to be there for them, to support them.  I guess what I am learning now is that it is also important to let go and trust others.  That doesn't mean being blind to blatant mistakes.  I will always be mom's biggest advocate and will certainly fight for her to continue to have the very best care.  However, I am working diligently to give up the reigns a little bit.  To be her daughter that just happens to be a medical student, rather than a medical professional constantly on the watch when I come to see her.

Because when I come wearing my "medical professional" hat, I miss moments like this:

Innocence.

Today has been a rough day, and I come off of the heels of a rough weekend, and a rough several weeks.  Earlier today, while riding in the car, I stared blankly out of the window – deep in thought.  As my eyes drifted back into focus I caught glimpse of a little girl staring back at me out of the window of a school bus.  She stuck out her tongue and made a ridiculous face at me.  I just stared back blankly.

I often envy others who seem free from cares.  Typically this is in the context of studying for medical school.  I will gaze out of the window of a coffee shop and see a group of college students trekking down the street just having a blast, not a care in the world.  I am embarrassed to admit it, but when I am really in the thick of things at school I want to wring their necks.  I envy their freedom to do what they want and their lack of responsibility.  Of course I chose my path, and I realize how irrational these thoughts are, but it is amazing what 12 hours of straight coffee and studying will do to even the sanest person (not that I am sane).

Today this little girl made me feel something entirely different.  She made me wish for my innocence again.  She made me want to forget how terribly hard life can be.  I don’t blame children for their innocence.  Rather I want to bottle it up and take a drink when I really feel overwhelmed.  I just wish for the days when I didn’t know how difficult things really are. 

My mom has taken another turn for the worse.  I have watched as the system has continuously failed my family as we try to navigate the ins and outs of her care.  She is a unique patient, I get it, but she is a person nonetheless.  She has a story, a pathway, a tragic plunge into the darkness that has now overtaken her.  She is scared and tired and alone in her mind.  I am left to be her storyteller to anyone who will listen to me. 

The problems I am facing lie with communication, or lack thereof.  Isn’t that always the case?  I feel alone trying to help her survive what seems to be an endless battle with medications, and nurses, and EMTs, and social workers, and probably worst of all, doctors.  It is like the game of telephone that you play when you are young.  The more she is shipped around.   The more people who get involved in her care (more accurately, lack of care) the more the story changes.  In this litigious society we live in, no one wants to take the blame when I catch their mistakes and oversight, and certainly no one wants to seem neglectful.  No one wants to seem too busy to take the time to get to know her, to get to know me.  But very few people have. 

In med school we are taught from physician lecturers to care for the caregiver, to take the burden off of them whenever possible.  Let them know it isn’t their fault, that they shouldn’t feel guilty or sad, and that they aren’t alone. 

Only once in the last several years, yesterday in the ER, did I feel complete support from someone in the healthcare field.  An EMT held me in her arms and just told me how very sorry she was and how hard this all must be.  And I wept.  I wept for the realization from a medical professional that this is just not fair.  I wept to know that SOMEONE noticed just how hard this is and just how scared my mother and I are.  I wept because that sort of embrace should be the norm, not the exception.

I am on a plane right now to California.  I reluctantly left with my mom still in limbo with her care moving forward.  I need this time away to think and reflect.  There is one thing I do know, with loss of innocence comes a gain of perspective, and for me a burning desire to make things right.  My mother’s story will be told and she will be comfortable, safe, and respected if it is the very last thing I do. 

I draw strength.

I draw strength from my mother's smile and the twinkle in her eyes.  As of late, it is not uncommon for both to be absent, but occasionally I catch a glimpse and when I do, I try to capture it on photo.  Today I celebrate the beauty of my mother's smile and the way in which it keeps me going when things seem too hard to handle.  Here are a few photos from the past couple of months:

I think I bored her with all of my photo taking!

Playing it cool.

Sharing kisses.

This photo is particularly meaningful.  My mom hasn't cried with me in months.  She hasn't really registered who I am much lately.  But last Friday, she knew who I was.  She looked me in the eyes, and we both cried together.  She told me she loved me to the sky and back.  

In dreams.

As of late I have had vivid dreams about mom.  It is weird to dream about someone who is still living but to feel as though they are visiting you from another place.  In my dream last night she was starting to lose her memory.  Unlike the real life scenario, in this dream she told me she was scared.

She has always been so proud, so strong, and so put together.  Save for a few moments of vulnerability throughout the years, she has never admitted fear to me.  I could see it so clearly on her face when I would visit her, but she never said it.  

Last night, in my dream, she did.  And in response to her fear, I looked her in the eye and told her that we should just dance through it.  And we did.  We danced through the aisles of the large convention hall we were standing in (it was a dream... who knows why we were in a convention hall).  People stared but we were laughing so hard we didn't even see them.

Mom is gone now.  Her body is still there, but the soul that inhabited it has dissipated away.  In person I try to calm her fears, to tell her it will be ok.  When she cries softly "Please help me..." I wish that I could grab her hands and just dance her around her room.  I hope that it is in fact her soul that I am speaking with in my dreams.  Or maybe our dreams are melding into one so that she knows what I am saying when I say it to her.  Because I want to believe that I can calm her fears.  I want to believe that at night, when I lay down to sleep, I am meeting my mom to dance.   

Bedtime for Bonzo.

Tonight as I closed my books and shut off my desk lamp I said aloud to myself "It's bedtime for Bonzo!"  Immediately my mind shot back to bedtime rituals of old.  This was my mom's affectionate way of telling me it was time for bed when I was young.  I am sure it was met with a series of moans and groans from me, but truly, being tucked in was one of my favorite pastimes with mom.

• Sometimes it was a bedtime story.  Usually a Canadian classic such as "Make way for ducklings" or "Love you forever" (which is incredibly pertinent for me now - read it).  
• Then it was a lullaby.  My favorite was "Here comes the sandman," though she had several.  
• Then came my favorite - the multiple mini-kisses on my face.  Each day we would add another kiss until we would forget how many we had gotten to (I think one time we made it all the way to 2 months), and we would start all over again.  They were tiny little kisses that tickled and made me laugh.  
• Finally it was time to be rolled up in my blanket.  She would shove her hands on either sides of my blankets until I was wrapped in a blanket cocoon.  While she did this she would say, "snug as a bug in a rug!"  
• As she left my bedroom she would switch off my light and turn on the multicolored Christmas lights around my door.  My nightlight.  

I feel all of these sensations as if they were yesterday.  I miss being tucked in by mom.  I wonder sometimes if I miss it more because I know she won't ever do it again.

Now I tuck her in.  I brush her hair aside and give her mini kisses all over her forehead.  She giggles.  I sing her lullabies and tell her I love her to the sky and back.  

I guess that this is the normal progression of growing older.  Roles change, we adapt and find new ways to gain fulfillment.  I just think sometimes, on nights like tonight, I long to be tucked in like the old days.

cuddle bunny.

Sometimes all you want is to cuddle up next to your favorite person to take a nice long nap.  Today mom and I did just that.  We turned on Parent Trap (Lindsay Lohan pre-party years) and slept.

I remember people telling me when I was young to enjoy the fun I was having.  The free afternoons, the planned recesses during the day, the fact that I could eat 20 Reese's PB cups without immediately seeing it manifest on my thighs.  These are things I didn't understand until now.  Now I live in a constant state of "go-mode."  Now my worries seem large and my recesses seem few and far between.  This morning with my mom brought me back to old times.

I appreciate them more now.

The baby doll.

For the purpose of my post, her name will be Erma... I don't want to give away identity, med school has taught me this much.  Next to her at the dinner table was a ratty baby doll, worse for the wear and missing an arm.  On the doll's soft white pillow of a body were stains, no doubt remnants left by the many who have held and rocked her to sleep.  Today she was Erma's baby.  As Erma struggled to get up from the table the nurse's aide (frustrated at Erma's 3rd or 4th attempt to leave the table early) shouted from across the table "Erma, you can't get up!  Your baby is still at the table!  You don't want to forget her, she will be so sad."  Erma immediately realized what had happened.  She sat back down, and with the help of the aide she grabbed the doll and began rocking her.

Erma: "I am so sorry my baby girl, I didn't mean to leave you behind."

Erma rocked the baby and spoke softly to her.  She kissed her on the head and told her she loved her very much.  She spoke as a mother would in soft tones with love in her eyes.  When dessert came out Erma tried desperately to share her cookie with the baby, giving the first bite to her as any mother would.  If you have ever visited a nursing home you know that dessert is the best part of the meal for most residents.  The sweet taste buds are some of the last to go as you age and so most never lose their sweet tooth.  That being said, it was quite incredible that she offered her treat up with such selflessness.  She tried over and over to coax the baby doll to eat her cookie.  She finally said with a twinkle in her eye and a laugh that would make anyone smile: "Well if she isn't going to eat it, I am sure not going to let it go to waste!"

It is amazing as we age the faculties that go and the faculties that stay.  We lose eyesight, hearing, taste, touch, many of our senses.  Sometimes we lose our grip on reality.  But my encounters have taught me that the elderly, even at the latest stages of dementia, still maintain fundamental emotions and feelings.  Love, fear, joy, anxiety.  For Erma it manifested with the most intimate of interactions with her baby.  An interaction that could have mirrored a new mother sitting on a park bench cooing at her baby girl.