Dear Dad: Thanks for Everything

Dear Dad,

This morning I woke up knowing that it was Father's Day and thought about how I would go visit you at the nursing home.  It only took a few seconds for my brain to catch up and remember that you are gone.  It is that time of year again where I am constantly reminded of you.  Father's Day, closely followed by the anniversary of the day you passed and then your birthday.  I usually get sad and then mad and sad again but eventually I remember the valuable things you left me with.  It feels like each time I think about you and what we experienced together I'm reminded of another way that you showed me how to embrace life and weed out the crap (gardening pun intended).

I remember sitting in the car with you one spring day.  We were driving back to the nursing home and by this point in time you didn't speak much.  We were stopped at a stop sign and all the sudden you made a small gasp while you gazed out the side window.  I turned and followed your gaze to a gigantic cherry blossom tree with beautiful pink flowers all over it.  We sat at the stop sign for a couple minutes just enjoying how beautiful the tree was and it dawned on me how amazing it was that I didn't even need you to tell me what you were looking at to know what you saw and how it made you feel.  Now I try to make sure I find the time to stop and "smell the roses" every once in a while, something I rarely made time for before.  Thank you for reminding me how much beauty we are surrounded by on a daily basis.

As you progressed into the disease and became less and less like my dad each day, I'm sorry to admit that I started to struggle with motivating myself to visit.  I had just had your first granddaughter and I wanted to spend my entire weekend watching her grow, instead of watching you fade away.  It was so hard to see you in that frail body but I made myself visit and tried to focus on the happy memories I've had with you.  Now that you are gone, I am so thankful that I don't have any regrets and I've tried to carry that over to other parts of my life.  I know I can't do it all but when it comes to visiting friends, taking advantage of new opportunities, taking risks, and showing people that I care about them, I'd rather be a little busy than regret not spending time with the people I care about or living my life to the fullest.  Thank you for showing me that you are more likely to regret what you didn't do than what you did. 

Being the youngest of 14 kids, you probably spent a lot of your childhood wishing you could just be alone.  Which I can totally understand but you also somehow managed to be one of those people who everyone loved to be around.  You were friendly, kind and extremely loyal to your friends.  Watching postcards come in the mail almost every single week from your friend Mark for YEARS showed me what it means to be a good friend.  I've had friends that created constant drama with their insecurities, bitterness, and thoughtless actions.  Losing you made me see that life shouldn't be wasted on undeserving friends.  I now save my kindness and loyalty for people that bring joy to my life just by being who they are, a good person.  Thank you for showing me that life is too short for crappy relationships. 

By the time I was 28 years old, I consider myself an expert in Social Security, Medicare and Power of Attorney.  Not something many 28 year olds could say.  One day when you were living with your sister in North Carolina, mom called to tell me that she found your Will and it hadn't been updated since you got divorced from your third wife. You had been diagnosed with a incurable disease and your Will was leaving everything you had to a woman you didn't speak to anymore.  It wasn't a matter of making sure your children inherited your money one day, we needed money to pay for your care and thankfully we were able to update the Will.  And I am thankful down to my very core that you included your advanced directives in your Will.  You specified that you didn't want any lifesaving measures taken, specifically a feeding tube, and I know that if I had to make that decision for you, it would have broken my heart.  Shortly after we had our oldest daughter, we went to the lawyer and had our Living Wills created.  Thank you for showing me how important it is to get your life in order, especially when you have kids.

I remember sitting next to your bed at the nursing home one day and struggling to remember what it was like before you were sick.  Luckily you and mom were both amazing photographers so we have more photos than we know what to do with but I was having trouble holding on to a real memory.  Every memory I had in my head of you was tinged with Alzheimer's.  When I was a young I didn't pay enough attention to you being in my life.  Instead of trying to rush through life; instead of being frustrated and angry about you not being around all the time; I should have stopped to enjoy having you as my dad.  My healthy, vibrant and amazingly funny dad.  I don't want to rush through anything again.  I take pictures constantly now.  I started writing down my favorite memories of the girls as often as I can remember and try to embrace it all.  Thank you for showing me that every single moment is worth appreciating and capturing, good or bad.  

These next couple of weeks are going to be particularly hard without you but I will keep reminding myself of all the amazing things you taught me.  Enjoy life's beauty, regret nothing, surround myself with good friends, keep my life in order and appreciate everything I am lucky enough to have.

Thanks Dad.

A Lesson from Dad

I was sitting in my car driving to a race the other day and the Sam Smith song Stay with Me came on the radio.  Part way through the song, I passed the exit that I used to take to go see my dad when he was living in a nursing home.  It had been a while since I drove this particular route, and just the sight of that exit sign hit me like a ton of bricks.  I miss him.  I miss him more than ever.  And this love song about a one night stand was making me cry like a baby.  It is truly incredible how your mind can turn any song into something fitting to how you are feeling at the moment.  Why couldn't my dad stay with me?  It is one of the most cliche things you can say about loss but it is true, time doesn't make it stop hurting, it just hurts a little less often.  Just when you think you are getting used to the idea of not having the person around anymore and a random song on the radio smacks you across the face and puts you in your place.

Though I didn't have the type of relationship with my dad that I would have liked over the years, what took me a while to realize is that even the broken relationship we had when he was sick made me into the person I am today.  I learned things I don't know if I would have figured out, or figured out as quickly, if he had never been diagnosed with early-onset Alzheimer's disease.

My dad was staying with his sister in North Carolina when it became clear that he needed a higher level of care.  The tricky part about the early stages of Alzheimer's, especially early-onset, is that the mind is greatly effected but most physical things stay status quo.  My dad was an incredibly healthy man.  His doctors would joke that he had a body of a seventeen year old.  And because he was so physically healthy and didn't have a high "medical need level", we had a hard time placing him in a nursing home.   There was the option of placing him in assisted living, but we had been told that every time you move someone with Alzheimer's to a new environment, their disease progresses exponentially (absolutely true).  I wanted to find somewhere he could be comfortable and happy for as long as possible. So we found a nursing home near my home on Long Island and I started the process of figuring out how to take care of a parent.

If you think you tend to be judged as a parent, try being 25 and responsible for making life, health and financial decisions for your father.  When I went to Social Security to become the payee on his account, they grilled me like a criminal.  When I took him to the movies and he tripped and skinned his knee, I was scolded by the nursing home staff like a child.  I get it, they were trying to make sure he was taken care of but it didn't feel good.  It felt like nothing I did was right.

Plus, every decision my sister and I made was backhandedly questioned.  Why isn't he in assisted living?  Why did you move him away from his home in Colorado?  Why isn't he at home with you?  Why don't you visit more often?  That last one consumed me.  I really enjoyed visiting my dad when he was in the early stages of his disease.  It felt like quality father-daughter time that I'd missed when I was younger, but by the time he was bed-ridden and non-communicative, it was...painful.  I dreaded visiting each time because it just wasn't my dad anymore.  He was a sad, empty shell of who my dad used to be.

By the time my father was in the later stages of the disease, I had given birth to our oldest daughter.   In addition to needing to dedicate more time to being a parent, my dad contracted an extremely contagious bacterial disease and bringing a baby/toddler to the nursing home to visit wasn't an option anymore.  So in the end, I was able to visit around one day a week.  I would bring a book, in case he was sleeping, but in most cases I would just sit next to his bed, holding his frail, boney hand and think about how unfair it all was, how hard it was to see him like this and how I should be doing more.  I should talk to him about everything that is going on in my day; I should sing him songs he loves; I should feed him every meal and visit every day.  I had never experience guilt like that before and I haven't experienced it since.  Yes, leaving my first daughter at daycare for the first time felt shitty but in a different way.  I felt guilty because I missed her, not because I truly felt like I was failing.

Even though each weekly visit was an emotional roller coaster, I continued to go.  I tried not to ever miss a week.  And when he passed away, and some time had passed, I finally accepted that though it never felt like enough, I had done the best that I could.  I wasn't going to be deemed Daughter of the Year anytime soon and of course I wished I lived closer or had circumstances that allowed me to visit more often, but I don't have any regrets.  And now, when I find myself in a situation with my family, work or friends where I feel like I'm not doing as much as I should, it is much easier for me to let my experience with my dad put me in my place.  You can't do it all, all the time.  You don't need to be perfect.  You are absolutely doing the best you can and that is enough.

Thanks dad.



To learn more about Alzheimer's Disease visit the Alzheimer's Association website or feel free to reach out to me directly with any questions.

Clarity Out of Loss

The reason I decided to call this blog Clarity Out of Chaos instead of something more straightforward like "Organizing is Awesome!" or "Get Your Sh*t Together!" (wait, that's a good one) is because my chaos has included more than just clutter and disorganization.  Life itself can be extremely chaotic.  As I mentioned in an earlier post, I believe that the reason I enjoy structure so much is partly due to the lack of control I've felt for a good chunk of my life.

I grew up with two hippie parents, my older sister and a cat named Rainbow in a small town in Colorado.  My parents realized early on that they were driving each other crazy and got divorced when I was four.  After that there was a lot of back and forth with my mom who suffered from depression problems and my dad who disappeared each time he got a new girlfriend.  I remember having a lot of fun when I was little but I was young enough to not understand most of what was going on.

Then one day when I was 22 and living in New York City with my sister, we started getting emails and phone calls from our mom and neighbors and friends that something might be wrong with dad.  He was being very forgetful and easily frustrated with simple tasks like calculating a tip at lunch.  Dad was a very stubborn man so it took another year or so until he was diagnosed with early on-set Alzheimer's.  He was only 58 and he passed away at by the age of 67.

I spent those nine years growing up way too fast.  The biggest concern for a lot of 22 year olds is securing a job after college but my sister and I were busy with things like convincing my dad that he wasn't capable of living alone, selling our childhood home so we had money to pay for his care and applying for Medicare, Medicaid, Power of Attorney, etc.  We had help from a lot of people that cared about him but since he wasn't married, the big decisions were on our shoulders.  It was chaotic to say the least.

It is difficult to find clarity out of a situation as devastating as watching your father fade away.  Since I didn't always have my dad around growing up, I often struggled with the fact that a lot of my memories of him are from when he was sick.  I struggled with taking care of someone that didn't always make the time to take care of me.  And as the years passed, I struggled with having to do some of the same tasks for my dad as I was doing for my first child; feeding him, changing his clothes/diaper and trying to communicate without words.

The best advice I've ever received, from an amazing friend, is that we are only given as much as we can handle.  This became my mantra.  "I can do this.  I am strong enough to handle this."  Eventually many of the things I found so frustrating about the situation ended up bringing clarity to the rest of my life.  Taking care of my dad taught me extreme patience, which made me a better mom.  And even if it wasn't the kind of time I thought I would get, I know I ended up spending more time with my dad than if he had never been diagnosed.  Yes, he missed my sister getting married, the birth of my second daughter and countless memories to come but I'm so grateful for the time I had with him.

If you would like to learn more about Alzheimer's Disease you can visit this website or you can donate to my fundraising page for the 2015 NYC Half Marathon.