Wednesday, May 6, 2015

The Four Words I Didn't Want to Say.

I've struggled with this post for a while. It's been a few months and the words just never made it on the screen. They ran through my mind several times, but I could just never get them down, and quite frankly I wasn't sure if I wanted to put them down. Then as any 32 year old would do, I asked my Mom if they would be okay if I wrote it down and she said absolutely.

Tuesday was the sillies birthday and as I do every year, I made a year in review video. When I was talking to my parents they both told me that it was great, but then my Dad said, "Thank you, this really brought back a lot of memories." I said, "You're welcome!" and tried to be as cheerful as possible. Then I completely broke down.

It's such a simple phrase, "...this really brought back a lot of memories." What you don't know is that phrase means the world to me.

My Dad has Alzheimer's.

We found out around Christmas. I honestly cannot remember if it was before or after. It actually may have been around New Year's. My Mom mentioned it in a passing kind of way. "The doctor's appointment went well, the tests came back..blah blah blah...and then we picked up your Dad's Alzheimer's medication." Say what?

I'm not going to lie, I've suspected it for a while, I think we all have, but actually hearing it was almost to much to handle. He's really not in a specific stage yet, it's still really early. They have him on a medication to help offset some of the symptoms, which is great, but this is just the beginning of what I know is going to be a long hard road.

My grandmother and great aunt also had Alzheimer's and that of course begs the question, is it genetic? We're not sure. I know it was rough with my grandma. I will never forget when I was pregnant with Aaron and Jill and one of the local hospitals in Chicago called me. They said they needed someone to calm my grandmother down (she was admitted there that day). I couldn't figure out how they got my number or why they were calling me when my parents were literally 15 minutes away. That conversation was one of the hardest I think I've ever had and was magnified by my pregnancy hormones (times two). I knew then what was going on and was not ready to begin to process it.

For the most part when I talk to my Dad he's having a good day. We definitely have the same conversation a lot, but he still knows who I am, he still knows my kids and really, that's all that matters. Right now I cannot let the idea of what's to come bog me down, I have to relish each moment that I have with him and plan for the times that those memories will not come back as easily.

They are coming down in November to spend Thanksgiving with us. To say that I am excited to have them here would be an understatement. I love being with my family during the holidays. However, this Thanksgiving will be a little more emotional and a little more special.

The shitty thing about this disease is we do not have a time frame to work within. It's not like any other illness where a doctor can look at a chart and say, "you have 3-4 months." It's not that simple. The whole thing is a sick roller coaster, but I'm trying to overlook that for as long as I can.

I want to enjoy these times and I want him to enjoy these times. I know in the future he may not remember it, but I will and my kids will and really, that's what matters. I know he will always love me, even though it terrifies me that one day he will have no idea who I am.

I go through waves with this news. I have my days where I accept it for what it is and do my research trying to absorb as much information as I can. I try and read the research (specifically from overseas, because let's face it, they have their shit together) and see what advances are being made.

Then there are the days that I am doing something normal, like making dinner, and something sets me off. One night, "The Way You Look Tonight" (Tony Bennett's version) came on and I had to stop what I was doing. The weight of the disease hit me. Someday he could forget that we danced to that song at my wedding. That he sang the last few verses to me as we danced. That I chose that version because of a story he would tell from when my brother Kevin went to Western Illinois and my Dad saw Tony in the hall and yelled, "Ay, Tony!"

We are in for the long haul on this and I am beyond thankful to have Scott by my side. I honestly cannot think of a better support than him. (There's something to be said about marrying a Southern, ladies, they are the strong silent type)

I'm also thankful for the memories that have been made and that will be made. I'm thankful that movies like "Still Alice" are winning awards and gaining recognition. I can only hope that movie will do for Alzheimer's what Philadelphia did for HIV/AIDS and bring more awareness to the disease that affects more than 3 million people living in the United States.

This journey is just beginning, but I am ready to be there with my Dad, to support my Mom and my siblings. We are on this crazy ride together and we need to enjoy every possible second.


Stephanie Chan said...

I'm so sorry, Amanda. Thinking of you and your family. I know I don't have to tell you to cherish those memories!

Chelsie Sloan said...

What an emotional post. So sorry to hear this news, but I am keeping you and your family in my prayers. Embrace all the moments!!

Sadia said...

I can't even imagine the massive amalgam of feelings you must have. The love is there. Your dad's still there. Enjoy Thanksgiving like none other!

Julie Rocco said...

I am so sorry for what you are trying to prepare yourself for. I cannot fathom having either of my folks face alzheimers. My father's physical issues are difficult enough. Record as many moments as possible (like in 50 First Dates) ... it may help him remember as things progress. (((Hugs)))

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