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.  ;)