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:

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.

cat nap.

I am in San Diego visiting family for the week. It is so nice to get some time away from Missouri - I love the pace here and the ability to just enjoy the day-to-day without stress. My uncle and aunt (Ted and Molly) are like parents to me. Growing up my mom and I lived in the bottom level of their house so we had the opportunity to grow very close. As far back as I can remember they were the voices at the top of the stairs. I would just call up the stairs "Molly! Ted!" and they would be there.

It was in early high school that mom and I moved out of the house and bought our own place. It was a strange transition to have them across town rather than at the top of the stairs. I remember really missing the accessibility and comfort that came with being able to see them every day. Now several years have passed and they are half a nation away. I try to make the trip out to see them whenever possible - usually once or twice a year. This house has become like home for me now, a place to rest, a place to REALLY relax and find inner peace. The best part? I am once again under the same roof with two of the most important people in my life. It just feels right.

Oh yeah, I have also inherited three very special sisters. Some of them more reluctant to share their space (ahem, Leah) than others. You may remember them from posts made last summer. They all have such very unique personalities! Tonight while Ted, Molly, and I were sitting and watching TV "the girls" were napping around us. It was like one big happy family.

This is Sarah - by far the most dainty of the three. She isn't quite sure what to do with me but she tolerates my presence and even allows me to pet her on occasion.

This is Leah. She does not like me at all. I try not to take it personally, apparently she doesn't really like anyone new. I suppose when you get to a certain age, making new friends seems silly. I think she is content. No one who isn't content can sleep that peacefully.

This is Hannah. We share a very special bond. She actually climbs into my lap and shows me endless affection. I learned tonight that she is camera shy though!

As soon as I took out the camera and shot her picture she turned and pressed her face against the arm of the couch. She is a private character. No paparazzi for her!

The smell of memories...

Have you ever smelled something and been immediately reminded of another time and place? I think this probably happens more as we get older. It probably also happens more when we are nostalgic. Regardless, I got into my car last night to run to the store and the smell hit me. I think it was a combo of the smell and the temperature and the stillness of the night. It reminded me of family vacations of old. By family I mean my mom and I. Every summer she would wake me at 4:30 in the morning and we would hop into our old minivan and hit the road for my Nana's house in Ohio. She would take the middle seat out on the van and create a little bed for me to sleep on. It would always be the perfect mix of cool and breezy outside. It would smell like dew and sleepiness and I would love it.

Mom and I were driving machines. We would blast oldies and dance and drive and drive and drive. Ohio was not our final stop, nor was Buffalo, NY (where her best friend Rebecca lived). These were just stops along the way. We would drive until we got all the way to our cottage in Canada. It was there that we would finally rest and put our feet up and enjoy our secluded family hideaway. This was my reality for every summer until I graduated high school. We would pick up co-captains along the journey. My Nana, my cousin Nancy, my great aunt Nellie, but mom and I were the constant travelers. Driving partners for life.

When I visit mom she still asks if we can take off on a drive together. If we can get in the car and just go. There is promise in the open road and the smell of dew and sleepiness. Mom and I are on journeys of our own now. I hope that at the end there will be a place that we can both put up our feet and rest.

June gloom.

This is what the locals call the haze that comes in from the ocean and covers the city during the mornings. I call it silly - there is nothing gloomy about San Diego. The sun ALWAYS comes out by noon and the days are sunny and breezy and beautiful.

I have been here 3 full days so far and it has been a lot of fun. For the first 2 days Ted and Molly's friend was here from Detroit. She played bball in college and shares the same birthday as me (July 5th). Needless to say, we hit it off!

On Sunday we went to the Hillcrest Farmer's Market...

We ate all kinds of good food at the market and we took some home to enjoy for dinner that night and the following night.

Sunday night we enjoyed delicious and fresh foods from our shopping trip that day:

Here are some oranges that were picked right off of the tree at Ted's friends house in Carlsbad (just up the coast from San Diego). Citrus fruits abound here!

Here is the spread for some of the food we had for dinner

I filled my plate to the brim!

Ted was the grill master. Though we didn't have meat, we did have grilled ears of corn.

And bread and wine...

Dinner was a success!

The next morning (Memorial Day) we got up and went to breakfast at The Mission, probably one of the best breakfast places in the area. I have been here every time that I have come to visit and I am NEVER disappointed. This day was the busiest I have ever seen the restaurant. We waited ~30 minutes to be seated.

Following breakfast we spent the day together just enjoying the nice weather and each other's company. Ted and Molly's friend from Carlsbad came in for dinner and we had a delicious spread (again). I didn't post pictures of this meal only because I feel as though this blog post is already pretty food-centric!

More than anything, the trip thus far has been very relaxing. I have spent much of my time trying to seduce the cats of the household. I have been able to pet Sarah and Hannah pretty regularly but I am still working on Leah.

Hannah...

Sarah...

Leah...

Friday = Fun Day

Today I woke up early and drove to Jefferson City, MO to take my mom to Columbia, MO for a doctor's appointment. The appointment went well and she and I had a good drive up and back together. In Columbia we had lunch at Hy-Vee - they have a GREAT salad bar. It was fun to pick out toppings and eat off of one another's plates :). When we were sufficiently stuffed we rolled ourselves back to the car.

At home we both went into slight food comas and decided a nice relaxing afternoon was in order. While she napped, I did some work. But it was very nice to do work in the company of my two favorite gals in the world - mom and Riley, her puppy dog. Early evening she and I made a trip to Target for this season's sunscreen and other needed items.

It may sound somewhat uneventful, but it was a really fun day - it is nice to have a fun time with mom and to enjoy/appreciate the small things. Here are a few things I captured photos of while enjoying the day.

This man had a love for MJ that even I couldn't match. He was decked head-to-toe in Jordan gear and he was rocking it proudly.

You have to love my mom's sense of humor. I saw this card above the sink in the kitchen. All day long when we were going somewhere she would ask if I was taking her to "funky town." I literally laughed out loud every time. It never gets old.

Today was graduation for Jefferson City High School. It was a beautiful night and the YMCA is right next to the stadium. I found out later they were graduating 610 seniors. Fewer than the number I graduated with, but still a long wait for the parents, students and fans. I can't believe it has been 9 years since I celebrated my high school graduation. It really flies by. It is hard to see the graduation going on in this picture, but it was a moment I had to catch. I must admit that I sat for awhile and listened from the hill to the sound of names and cheers. I guess the cheesy t-shirts we wore in high school weren't that far off "Jay Pride is Forever." :)

Loss.

This week my uncle Ted lost a very dear friend of his, Dr. Vert Mooney, in a car accident. This man was one of the primary reasons that my uncle moved to San Diego. Dr. Mooney was one of the premier spine surgeons in the world and from what Ted said was also an incredible intellect and an all around thoughtful and loving person. Though I have only met Dr. Mooney once in my life, I feel as though I knew him well. More than anything, I know how much he meant to Ted. When I got the voicemail from Ted that Dr. Mooney had passed, I cried. It was as if I was channeling Ted's loss.

Sometimes it takes the loss of someone to realize the close bonds that you have with the people who are still living. I feel lucky to have people in my life that I feel vulnerable enough to cry for.

Life is good.

This past weekend was so much fun. On Friday night I had the chance to go see the balloon glow that happens every year in Forest Park. For some reason the whole time that I was at the balloon glow, I was thinking of the song "Moon glow, lamp low" by Eleni Mandell:

Moonglow, Lamp Low - Eleni Mandell

The balloon glow was a ton of fun. We were there with some coworkers and their children and it was great to play with them and enjoy the event from a child's perspective. Probably the best part was playing with the light sabers that they bought from a passing vendor. The toys they have these days are so cool. Here are some photos from the night.

On Saturday morning I hopped on a plane and headed to Washington D.C. for my cousin Graham's wedding reception. He had his wedding in Greece a little over a week before. I don't get to see this part of my family as much as I would like so I was excited for the opportunity to spend time with them all. My cousin Nancy picked me up from the airport and we headed to visit an elderly woman that she has been volunteering with for the past 3 years. It was so much fun to spend the afternoon with her. We helped her to decorate Halloween cards for all of her friends. Apparently she hand makes these cards for EVERY holiday and no two cards are the same.

We then went into preparation mode for the barbeque/reception that was taking place on Sunday. This involved some serious cheese grating, baking pan shopping, cowbell decorating, and just plain strategizing. It was really nice to get so much time with my family and to be part of this big celebration for Graham and his new wife Vanessa. The next day (Sunday) the reception started at noon and we came with green bean casserole in tow. All of the prep by the family definitely paid off, the reception was absolutely beautiful and a great celebration of Graham and Vanessa's love.

Nancy and I on the way to the reception.

The reception site

The guest book.

A beautiful bouquet of fresh picked flowers from Aunt Anne

I have a fever...

and the only cure....

is more cowbell.

Food prep in action.

The amazing wedding cake. The sister of the bride made it. The rocks are made of chocolate - YUMMO!

The grooms cake. Go Redskins.

Family

Nancy preparing to sing the song that she wrote for Graham and Vanessa

Singing to the happy couple and the rest of the reception guests

Did I mention she is a rockstar? She just recently released her first CD. Check her out at: http://www.nancyeddymusic.com/ - if you like her tracks, buy her CD and help support her in following her dreams.

All in all it was a great weekend. It wouldn't have been complete though without seeing one of my fave DC residents...

Thankfully, he and Michelle were waiting at the airport to give me a grand send-off. It was really nice of them to get so dressed up (though quite unnecessary).