Saturday, May 2, 2015

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.

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