Perspective

Life is funny.  So much perspective is gain by simply living it.  And yet, it would be so helpful to understand the perspective when you're going through different stages of life.  I remember when I started high school, everyone told me those 4 years would go so fast and, I, having lived a whole 14 years thought all those people were ridiculous because a year was a long time and I hated school and there was no way high school was going to go fast. 

Those people were right.  They had already been there and had perspective.

I worked for a big corporation right out of high school.  My youngest co-worker was 28 and I remember thinking, "Wow...she's already having her 10 year high school reunion".  So many of my co-workers looked at me with these smiles that annoyed me at the time and said I needed to enjoy these carefree years because they weren't going to last forever.  I needed to enjoy eating whatever I wanted and staying up late and having few cares in the world.  I just thought they were too old to remember anything.  ;)

Those people were right.  They had already been there and had perspective.

Jump to years later when you think I would have had the sense to listen to people who had walked roads ahead of me, but once again, when parents told me to hang on to those babies of mine because time was going to fly, I wanted to punch them.  Time was not flying.  I felt as though I was awake every minute of every day.  I began to wonder if I would ever sleep again.  Or ever go to the bathroom alone again, or ever stop finding legos EVERYWHERE (how do they find their way to every little place in the house?), of if I would ever even experience just a simple moment of silence again.

Those people were right.  They had already been there and had perspective.

I'll be 45 in two months.  That is quite likely well over the halfway point in my life based on the lifespans in my family.  High school was a blink of an eye.  My 20s were a blur of time.  My babies are teenagers and looking at me like I used to look at my parents.  My mom is gone.  My dad is being lost to Parkinson's.  

Tonight I sit alone in my house.  In deafening silence.  And there is this battle in my brain that says, "ENJOY THIS!  Do you remember how much you longed for the sound of silence?" while the other part of my brain says, "Make it stop!  Bring back the sound of children, of giggling babies, of joyful toddlers, of playful elementary school aged children.  Bring it back!"  Oh...perspective.  I have SO much of it now and yet, I know there is still so much to be learned.  

The grass always seems so much greener on the other side.  Until you get there and you just want to go home to your own yard again.  My life is blessed.  I am grateful for every moment and every lesson and every laugh and every tear.  I just wish I could have spent more time appreciating each of those moments when I was living them.

I tell my children to slow down.  Enjoy this time.  Don't be in such a hurry for "freedom".  I tell those in their 20s to enjoy their young bodies that have abundant energy and a strong metabolism.  I tell new parents to hold those babies.  Snuggle those toddlers.  Enjoy every "I love you" that comes from their mouth.  Enjoy every little baby hand wrapped around theirs.  

I know there were difficulties and troubles throughout the last 45 years.  But when I look back on my life, I only see the things I wish I could have back and the things I wish I could have enjoyed more.  I KNOW there were moments when I thought the world was over.  I have most definitely struggled.  But those are not the vivid memories in my mind.

I want other people to learn from my perspective.  I know others felt the same way about me.  But you can't truly understand another person's perspective.  You have to experience yourself. It sort of feels like a cruel joke.  It's kind of that old adage, "You don't know what you've got 'til it's gone."  It's not really fair.

And I guess all that means is that we have to learn to live in TODAY.  In THIS moment.  We only get so many trips around the sun and none of us know exactly how many trips we get.  So, it is up to us to live in today.  But it's certainly easier said than done.

Tonight I will try to enjoy the silence.  The stillness.  The peace.  All things I desperately wanted not that long ago.  I will honor this moment knowing there are young parents all over the world who are simply longing for ONE moment of silence.  I'll pour myself a glass of wine, sit quietly, do a little reflecting and be curious about all the perspective I still have to learn...knowing I will learn it in time and that the only thing I can do for now is enjoy this moment.

SUN! :)

Maybe it was the weather, maybe it was the fact that mercury is in retrograde, maybe I'm just exhausted (even though I'm supposed to be "off" this week...which never works when you're self-employed).  I don't know what it was, but the past few days have been rough.  Really rough.  Staying up all night contemplating the meaning of life kind of rough. 

And I hate that place.  I am a student of meditation and self-awareness.  And it is my work.  And I still go to that place.  And when I'm there, I still beat myself up for not being able to stop it from happening.  And then I'm mad because I'm, once again, not giving myself some grace.  Ugh...

But then, today, the clouds cleared both outside my window and in my head.  And I guess the best thing to take away from the past few days was that even in the darkest of places, I still know that it will end.  I know the storm will pass.  I know the light will reappear.  Years ago, I couldn't remember this during the storm.  In the midst of it, it felt like it would last forever.  I suppose some would call that depression.  And maybe it was.  But mostly, I just had so much I needed to learn about myself that I simply was not aware of at the time.  

So many of us walk through the world that way.  Unaware of the weight of false stories and past lessons left unlearned.  It took my whole life crumbling for me to find my way to where I am today.  And I love it here.  I have a husband I am madly in love with and who loves me back with more genuineness than I ever knew was possible in a relationship.  He makes me feel loved in big ways and small on pretty much a daily basis.  I have 2 incredible teenage boys who I gave birth to, and 1 who came to me by marriage. I always wanted sons.  And I have three pretty amazing ones.  I have a beautiful home (albeit more cluttered than I would like these days, but that's fixable :) ).  I have work where I meet amazing people on their own life journeys.  I have a group of friends who I know would drop anything for me if I needed it.  I have an amazing education behind me from these past 5 years and will have my Masters degree is less than 6 months now.

But every once in a while, the rough days still appear.  I recognize that I am in a great time of transition in my life right now.  And those times can be scary and come with rough days.  Yet, I also know that from these times of transition, amazing things are born.  The past few days I couldn't see through the darkness.  Today, I see clearly.  You know how great it is to feel better after being sick?  You know how you appreciate the ability to swallow without pain and breathe out of your nose after not being able to do those things for a while?  You know how you ignore all that the rest of the year when you're not sick?  That's what it's like for me when coming out of a dark place.  The light is SO much brighter.  I feel so abundantly clear.  And the challenge is to hold on to THIS on a daily basis.  I'm so much better at that then I used to be, but I still have to remind myself, at times, that we all have crevices we have to climb out of now and then on this journey of life.  Falling in can be painful, the climb back up can be hard.  But arriving on the other side is magical and awe-inspiring and powerful.  

Here's to always finding the sun in the midst of a storm and the light in the darkest of places.

Nature

2014 has been a year of attempting mindfulness for me.  I have always been an anxious individual whose head tends to be spinning nearly 24/7.  Admittedly, there have been times when that constant thinking has served me well, but overall, it has mostly put an incredible burden on my body.  Last year, after ten years of therapy, I finally had some significant revelations about who I am and why I do the things I do.  Yes...TEN years of therapy.  Did I mention, I'm also stubborn?  ;)

Building off of my greater understanding of myself, I chose to truly make some changes in the way I live my life.  I have chosen to work on putting out positive energy on a daily basis.  I have chosen to embrace my strengths and not focus on what I consider to be my "weaknesses" because even those things can be strengths.  I have chosen to be mindful during my day.  I am still busy, but I take more time to experience moments and feel that I am living life more than just getting through day to day.  

One of the things I enjoy so much is my morning out on my porch as I start my day.  I drink my warm lemon water and just listen.  Sometimes it is silence I hear.  Wonderful, beautiful, silence.  Something I remember wishing for day after day when I had small children at home.  How I still LOVE the sound of silence.  Some days the birds are chatting with one another.  This morning, I listened to the rain fall.  And I experience it all.  All of my senses are alive and aware.  I listen, I smell the fresh morning air, I taste the cleansing lemon in the warm water, I feel the temperature and I see everything.  I see the clouds or the blue sky.  I see the sun or the moon and the early morning stars.  I see other neighbors as they begin their days.  And something I see and have always connected to is the tree in our front yard.  I love this tree.  It is the only tree we have and it marks all the seasons for me.  I take a picture of it every day I am out on the porch.  Today I decided that I'm going to post that picture as it is a tangible item that helps with being mindful of each and every day.  That tree changes just a little tiny bit every day and I love to witness the changes.  But seeing it through photos keeps me even more grounded.  

Today I'm posting both yesterday's picture and today's picture as they show the difference a day can make.  Nature is amazing and powerful and beautiful.  As is each day of life.  It is up to us to choose how we live it.  This does not mean that I don't still have very rough days.  I am human.  But even in the rough days, I practice mindfulness and I know the bad days don't last.  And I find it easier to dust myself off find my way again.  

So, here's to a new day, a new week and to being mindful...through my lone tree and the gifts of mother nature.  :)

Steps in Silent Stillness

When I began this blog, it was primarily to share my journey in caregiving and to shed some light on Parkinson's disease.  In my first post, I explained the title of this blog like this: 

"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." 

Yep...that is all still true.  However, I have realized that this blog is more about life and the journey I am on, which simply includes caregiving and my dad's Parkinson's disease.  It doesn't define me.  So, in addition to the above description, I have found that Steps in Silent Stillness also perfectly describes my current life journey.  It is constant steps and a constant desire to find that silent stillness in the world, which I am slowly finding.  So, the title of this blog still feel so perfect to me.  My focus of the blog has just changed a bit.  It's not so narrow...it's more about the full journey rather than just small pieces of it.  And instead of posting novel length Facebook posts, I'll use this place so people can choose to read or not and I won't take up entire screens of people's computer with Facebook posts.  ;)   

On that note...today, as I sat outside with my cup of warm lemon water, I felt the sting of the cold air and saw the thin dusting of snow on the ground, but as I listened to the birds chirp and sing, there was a slight sense of Spring in the air, and that sense of new beginnings that always comes with Spring.

I realized this morning that over the winter I have added in new rituals...lemon water every morning and sitting out on my front porch as many mornings as possible.  And I LOVE these new additions to my life.  And have no problem continuing with them.  I haven't missed one day of lemon water.  The quiet mornings on my front porch renew me and ground me and prepare me for my day in such a peaceful way.

I can't help but see that the additions to my life have been more successful and more fulfilling and more sustainable than all the times I've tried to remove something from my life.  Now, that doesn't mean I don't still monitor the food I eat, because I do.  But I don't restrict myself from anything.  If I determine that I truly want a piece of chocolate, I let myself have it.  And knowing I can have what I want keeps me from going on a binge and feeling badly later.  Adding in the mindful part to eating has been more successful than telling myself there are certain foods I can no longer have.  

Come to think of it, I always enjoyed addition over subtraction and multiplication over division.  ;)  I like this idea of adding to my life instead of subtracting from it.  And I've noticed that in the adding in of positive things, the negative things simply don't have as much space available to them in my life.  :)

Four Years

Four Years.  It's really kind of stunning that I have lived four years without my mom.  So much has happened in the past four years.  So much my mom hasn't shared.  And yet, I've survived.  

The past year has held immense growth for me.  I've figured out a lot about myself.  Much of it coming in the last few weeks honestly.  I've begun to figure out a lot of things that I likely would have not ever understood if my mom was still here.  

I wish I could write a long, long blog post and explain all the recent lessons.  But they are new and profound and for right now, private.  I need to process them more before sharing them...if I choose to share them at all.

Suffice it to say, four years ago, I was broken.  I had lost my mom.  This is where I was then: http://findingmymom.blogspot.com/2009/10/and-so-this-is-how-it-ends.html

Today...I am in such a different place.  I am no longer broken.  So many pieces have been put back together in ways they weren't connected before.  I understand so much more about myself.  I am a different person.  Of course, how could I not be?  I lost my mom to cancer and am losing my dad to Parkinson's.  But in losing my parents, I truly have found myself.  It has not been an easy journey.  The important journeys are never easy.  I have climbed mountains I haven't wanted to climb.  But upon reaching the top of those mountains I have been able to see clearly.  My head is above the clouds, not lost in them anymore.  

The blog I wrote when my mom was sick was called Finding My Mom in Small Goodbyes.  And I did find parts of my mom.  But what I have found in the past four years is ME.  And I am so, so grateful for the lessons I have learned.

I miss a lot of things about my mom.  I also miss things that never existed.  And there are things I don't miss as well.  I can say that now.  I wish I had figured out all this stuff before she died so we could have had a different relationship.  But it took her dying for me to figure it out.

Today will be a day of reflection as always.  But this year is different than all the rest.  I don't know how the day will go but I know that I am grateful for the person I am today.  I am grateful for the work I was forced to do because I lost my mom.  

There is power in time passed.  Time truly is a great healer.  And it marches on... 

When Feelings Get Hurt

Parkinson's truly is an insidious disease.  It is confusing and aggravating and just when you think you've made some progress, Parkinson's shows you who is in control.

I was so glad that dad's meds were adjusted last Friday.  I've been anticipating a change in him, convinced that the blood pressure meds were the problem.  Then on Thursday morning, just as I had shown up for work, I received a call from a nurse at dad's assisted living community.  Someone in the dining room had called for help with him.  He was dizzy and pale.  After some assessment, which resulted in more low BP readings and a very slow pulse, the staff wanted to call 911, but dad refused.  

So, here I was at work.  At a job where I can't just up and leave at a moment's notice without some significant hassle for everyone else.  And it felt as though the world started moving in slow motion.  I had become THAT person.  The person I study.  The person I read about. The person that can't hold a job because they are taking care of a loved one.  The person whose life has to stop and change gears at the drop of a hat when something like this occurs.  And in this short period of time, I wondered how I was going to pay my bills if I couldn't hold a job.  I wondered what I was going to do if dad was admitted to the hospital.  I was supposed to be starting a week long vacation the next day to devote time to my kids and my master's thesis.  Was everything going to change?  My head was spinning with all this, but partly because I didn't want to focus on what was happening with dad.  It all felt like too much.

Thankfully...so very, very thankfully, we switched care to the doctor we saw last week.  An old-school doctor who still makes house calls.  I asked the staff if they thought he would come over for dad instead of calling 911.  The nurse told me that he was already on his way over for someone else, so she would just add dad to his rounds.  I can't explain how relieved I was that we just started in his care.  Thank goodness for people like him.  Doctors who still take time with their patients.  His trip out to see dad saved dad the fear and confusion of an ambulance ride and it allowed me to stay at work and receive updates by phone for a couple of hours.  

The result was that more of dad's BP meds were adjusted.  He may just go off of them all together, but for now, we'll keep reducing them.  I called and spoke to dad later in the day and he was still confused about everything, but at least he was feeling better.

I drove out on Friday and sat with him for a while.  He was still confused.  He still couldn't come up with words.  And he was still unsure about what happened the day before, but he absolutely remembered that he did NOT want to go to the hospital.  We spent some time together and then I got up to head out for a busy day of errand running.  As I was getting to go, I told dad what I always tell him, "Call me if you need anything" and without even looking up at me, he said, "Well, it didn't do any good yesterday".  

Wait?  What?

Ouch.

I then went on to explain to him that I was in constant contact with the nurse and that I had been at work and that if the nurse had told me he wasn't getting better and/or that he was going to the hospital, I would have come.  He said he knew that.  But, wow, it definitely stung to hear him talk as if I had let him down.

And it still stings.  And I've been thinking about it a lot.  My reality is that I am the one who is in contact with my dad's assisted living community.  They all know me there.  I keep dad's grocery list and make sure that he always has the things he wants in his room...grape nuts, milk, honey, chocolate, chips, dip, ice cream, gum, etc.  I do all his laundry.  I pay his bills.  I talk with his insurance company.  I take him to doctor's appointments.  I fix as many of his problems as I can...like getting him a new, more user-friendly cell phone.  I bought him a robe that he can sit in in the mornings instead of getting fully dressed when he wants to get out of bed and rest in his chair.  I sit and research the latest and greatest PD information always looking for another option for him.  A large portion of my life is devoted to my dad.  But I also have a husband and children and three jobs and a master's degree to finish.  

And I know that my dad is confused and maybe he's so used to having me around when he needs me that he didn't understand why I didn't come on Thursday.  But...I got my feelings hurt.  And they're still hurting a bit.  But that's on me.  I know that no one can make us have feelings.  They come from a place within us.  And I know this is part of being a caregiver for someone with a neurodegenerative disease.  I understand the reality.  It just isn't always easy.  

And after I visited dad today, I still feel like something is off.  He's forgetting to go to the dining room for meals.  He's still hard to talk to.  I spent a good portion of time talking to the nursing staff.  And I wonder what is happening.  Is the Parkinson's declining?  Is it med related?  This damn disease is complicated.  It's a constant struggle to figure out what is going on and what needs to be done.  So, next week will be another call to his neurologist.  Probably another appointment.  

Please understand, I'm not complaining.  I'm just sharing.  It's important for me to get this stuff out for me to release some of the stress.  As I've progressed through my master's thesis, I have had some PD caregivers make contact with me.  I can't explain how much that has meant to me.  No one understands PD caregiving like another PD caregiver.

This blog is my place to be honest.  And in all honesty, it's hard to watch someone you love struggle like this.  It's hard to wonder if each day will be a good one or one that isn't so good.  It's hard to wake up in the middle of the night wondering if dad is okay.  And it's hard for dad.  He's living in this body that is betraying him.  I just want to make his life easier.  And this week I feel as though I let him down.  It seems I'm always letting someone down.  And it's not a fun place to be.  I am only one person and I'm doing the absolute best I can.  It's just frustrating when one's best isn't good enough.  

But my feelings will heal.  My dad's PD will not.  And so we all just keep plugging on day by day.  It's all any of us can do. 

One day at a time...

The Medication Battle and When Daughter Knows Best

Well, how about a little Parkinson's post again?  

Today I took dad to his first official appointment with his new family practitioner.  I love this guy.  He is old-school medicine.  He believes that a general practitioner should be just that...someone who is knowledgeable in general medicine...so basically just about everything.  When specialists are needed, that's great.  But he believes that the art of medicine is dying away and doctors are losing touch with their patients and taking temperatures and sending them out to someone else.  He doesn't practice that way and I'm so glad we found him.

Over the past few weeks, I've noticed a significant decline in my dad.  His memory had become very poor.  His speech was confusing.  He could barely carry on a conversation.  AND...he couldn't win a game of bingo when he used to be the group's ringer!

I became concerned.  I'm always a little on edge and apprehensive about Parkinson's dementia.  And then it occurred to me that his neurologist had added a new Parkinson's med at his last appointment at the end of August.  It was the first thing I discussed with the doctor today.  He took dad's blood pressure and it was 90/50!  No wonder he's confused!  And then I found myself so frustrated.  The staff at the assisted living community are taking his BP every day.  There had to be times when it was low like this.  Why wasn't I called?  Why didn't someone think this was concerning?  Why didn't anyone else notice my dad's confusion?  And then I was annoyed with myself for not automatically thinking blood pressure.  This is what happened in rehab too.

The doctor looked at me and said, "Good job paying attention!  Sometimes, oftentimes, daughters know best".  And he immediately wrote an order to stop the newest med.  It's not just daughters, but husbands and wives and sons and nieces and nephews and caregivers in general.  We're the ones that are paying attention.  We're the ones that MUST pay attention.

But could I have caught it sooner?  My work schedule has changed.  I'm almost working full time now and I'm trying to adjust to the new schedule and I feel as though, perhaps, I haven't paid quite as much attention to dad.  But I also feel that at $4100/mo, we should be getting people to pay attention at the assisted living community as well.  Yet, the bottom line is that no one is going to know my dad the way I know him.  They know dad today.  They don't know the dad I've known my entire life.  

And then I have to remind myself that I'm only human...and ultimately, I DID catch it.  I'm curious to see how things play out over the next few days.  If he returns to his more normal self (normal as far as Parkinson's goes), I'm going to sue for lost bingo winnings!  ;)  I truly believe now that it was the med.  And that frustrates me and aggravates me.  Four and a half years ago, when my mom was diagnosed with cancer, I didn't understand that it was going to be me who was going to be researching meds and side effects and drug reactions and interactions.  I also never truly understood how little the medical system works together.  But the last four and a half years have shown me this problem close up and personal.  Over and over and over.  It's so much of a concern of mine that my masters thesis is based, in part, on coordination of care (or lack there of).  

These are humans we're dealing with here.  They aren't numbers.  They aren't lab rats.  These are humans and my dad lost a month of his life over one medication.  And he could have lost more had this continued and his blood pressure kept dropping.  What happens to the people who don't have a loved one nearby paying nearly constant attention?  That idea scares me.  

Something needs to change in this system.  I don't know how the change happens just yet, but I know there is a large part of me that wants to be a catalyst in that change.  If nothing else, at least an advocate for patients and caregivers as they muddle their way through this system of ours.

Today was a good reminder to remain vigilant.  

To end on a funny note, after what dad called, "the most thorough prostate exam I've ever had" :o, the doctor told him today that he has the prostate of a 60 year old.  I think I'm going to get him a t-shirt.  ;)