Beginning In The Middle

Hi,

My name is Kelli and I'm an occasional blogger.  Usually I'm only blogging when there are momentous journeys in my life.  Certainly that is no different right now.  However, this is a longer journey than those in the past.  

I say I'm Beginning In The Middle because this particular journey began nearly 4 years ago when my last journey, http://findingmymom.blogspot.com/, ended.  Absolutely everything changed for me during that journey.  Yet, I didn't realize at the time that it was the beginning of this one and how profound this next journey would be.

So, let me see if I can explain what got me to where I am today.  My dad was diagnosed with Parkinson's disease (PD) in 2007 at the age of 70.  I knew nothing about PD except the tremor part and my dad didn't have tremors.  However, some quick research confirmed the diagnosis as I could now see the PD in my dad.  I didn't think a lot of the diagnosis.  All I knew at the time was that the meds he was put on gave me back my dad.  They had a dramatic effect and he was his old self again.  Then in 2009, my mom was diagnosed with stage IV, terminal cancer and died 7 months later.  You can read about that journey in the blog listed above.  My dad was a rock.  He and I were both by mom's side when she died.  But suffice it to say, I had become so used to being a caregiver at this point that I just kept playing that role with my dad after my mom died.  It wasn't until he looked at me one day, as we were planning a long road trip to a family event, and said, "Who decided I couldn't drive anymore?" when I realized I had gone too far.  

That was the day I stepped back and allowed my dad to find his own way.  He and my mom grew up across the street from each other.  They had known each other since they were 6 years old.  Finding himself without her was something he had to do on his own.  And he did.  He managed to figure things out without mom.  And then one day, I visited (I was a 2 hour drive away from his house) and I realized he looked super skinny.  I asked if he had been eating and he said that sometimes he just "forgot" to eat.  A warning bell went off in my head and I knew it was time to start paying more attention.  And over the next couple of years, my caregiving role became more and more involved.  

That's the brief story that brings me to today and why it was finally time to start getting things out of my head again.  My dad's PD has progressed significantly.  I am now completely immersed in my dad's life.  I know all the ins and outs of PD.  I know all my dad's doctors.  I attend all his appointments with him.  In March, he had back surgery and watching him come out of anesthesia was one of the most difficult things I have ever gone through.  It changed me and it made me very aware of my role in his life.  He spent two weeks in rehab which were also very tough and then a month at home with 24 hour, paid, in-home care while we waited to figure out what we were going to do.  Thank goodness my dad was smart enough in his earlier years to have bought a long-term care insurance policy because without it, I don't know what we would have done.  But my discussion about long-term care insurance will be left for another post.  :)

Ultimately, after about 2 years of trying to convince my dad to move south, it was the surgery that was the catalyst to the eventual move.  As dad was home with live-in care, he began to understand the value of assisted living.  And finally, on April 28th, we moved him to a beautiful assisted living community much closer to me.  He is happy there and has an active social life and has his own private apartment, but 24 hour care available for things when he needs it.  And his PD continues to progress, he needs more and more of that care.

Since that move, I have been slowly cleaning out my mom and dad's house and preparing it for sale.  Yesterday, the house was listed and we held a yard sale to try and make some money for my dad off the furniture that my brother and I weren't going to take.  This was my first yard sale.  I hate them.  But what an amazing day it was as so many people stopped to ask about my dad.  It was beautiful to see how many people cared about him in his neighborhood.  I've always known that my dad was that guy that had no enemies.  Everyone loves him.  But it was touching to see how many people made an effort to inquire about him during the yard sale.  At the end of the day, we made some money and then what was left over was taken to a local church to be used in their large church yard sale to help fund mission trips.  

Today was spent with my husband as we packed up the furniture we were taking and the things that simply couldn't be parted with and filled a u-haul and drove it down to a storage unit near our home.  And after the past 3 months of the house not being lived in, after 2 years of trying to convince dad to move, after nearly 4 years of my mom being gone, TODAY rocked me to my core.  This wasn't my childhood home.  My parents moved to this house about 10-12 years ago, but it was their future.  It was where they were going to spend their retirement and my mom loved that house.  And today, all of those dreams lost seemed to hit me all at once as I looked back on that empty house as I drove away.  I cried for nearly all of my two hour drive.  It was a pain that I hadn't felt since my mom died.  It was grief.  I know that.  It was grief that I obviously haven't processed yet.  And it was grief for things that never came to pass.  And it is grief for what is to come.  

This PD isn't going away.  And it will continue to progress.  Every day there is another phone call to make or another appointment to attend.  Mix that with my work and my kids and my husband and completing my masters and I'm stretched about as far as I can go.  And tonight, I am in physical and emotional pain of such intensity that I knew it had to be written down in order for me to start moving forward.  My parents entire life was parted out this weekend.  Everything they had accumulated over a lifetime just was split up into little pieces and gone in so many different directions.  It was surreal and painful and heartbreaking.  

And so, there is much more to come.  Those are the basics of why this new blog exists.  Steps in Silent Stillness has multiple meanings.  Steps to those with PD are often difficult.  Steps for caregivers are many and exhausting.  Silent speaks to those with PD who often lose the ability to express themselves through facial movements, cognition loss, and speech difficulties.  Silent also speaks to caregivers who just keep going, quite often in silence because those around them can never fully understand what they are going through.  I'm breaking that silence with this blog, but I know the majority of caregivers out there are still silently handling their responsibilities day in and day out.  And then stillness.  PD creates a stillness in people that is unwanted.  PD creates stiffness and the inability to move well.  And in a juxtaposition, stillness is what so many caregivers crave.  Moments to be still and rest that do not come easily or often.  

This role is not an easy one.  It's not easy sometimes to grow up and lose your parents or watch them fade away.  Parkinson's is a terrible disease and I am devoted to spreading the word about it and working towards finding a cure.  Research has shown there is a heredity factor and I would like to know that my children won't have to worry about PD in their future.  And I also have a strong desire to spread the word about the thousands and thousands of family caregivers out there who are working every day to care for their loved ones.  We will all likely find ourselves in a similar place one day and it is important that the voices of these caregivers be heard.  We need to do a better job as a society to take care of the caregivers so they can remain strong in their role.

As I have learned through blogging in the past, sometimes what I sit down to write doesn't come out, but instead other things come through my fingers on to the keyboard and on to my screen.  That certainly happened tonight.  But the blog has started and I, once again, have a place to get out all the thoughts that roll around in my head.  I know the healing that can come from blogging.  And my goal for this blog is some of that healing for myself, but also a place to advocate and bring awareness to PD and to caregivers around the world.  I hope you'll join me on my latest journey because no journey is ever truly taken alone.