The Reality of Alzheimer's - A Daughter's Take

My parents came down for Thanksgiving this year. These times with them are special to me, and I'll be honest, I was not the ideal daughter this trip. I was overwhelmed by my Dad's Alzheimer's. Can I be really honest and say that I am ashamed to admit that?


The intelligent, article reading, finding all the facts part of me knows that my Dad will never be my Dad again. He was lost a few years ago when the diagnosis was made. Sure, he looks like my Dad, still kind of acts like my Dad, but he's not my Dad. He's the shell of my Dad. The emotional, self-proclaimed Daddy's girl is having a hard time coming to grips with this reality.


To see the confusion in his eyes and frustration quickly replace it was hard.


To hear him ask if this is where he lives now and ask what happened to their house was hard.


To see this disease weave in and out throughout each day was hard.


But you know what else was hard? To see the toll it takes on my Mom. She is his 24/7 caregiver and it's wearing on her. I know I was getting irritated when she would respond in a not so nice tone, or take her frustration out on me (and maybe I did the same), but at the end of the day, I cannot imagine what this is like for her. The man she married almost 57 years ago is not that same man.


And you know what else was hard? To see my kids handle it better than I did. They rolled with it while I crumbled. We went to the movies and my dude was there for my Dad every step of the way while I was stifling an anxiety attack.


This disease is more than forgetfulness and it affects more than just the patient. It ripples throughout the family like a boulder being thrown into one of those picturesque ponds. Everyone handles it differently, and I thought in my heart of hearts I handled it well before this trip. I thought I was one of the strong ones because I did the research, I studied up on the facts, but in reality, I'm a coward that does not want to face the reality. I have my head buried in the sand, and that sometimes feels like it's burying my head a little deeper with each conversation.


I wish I was stronger. I wish I could do more. I wish I was a better daughter on this trip. I wish a lot of things really. I wish my Mom had the man she fell in love with to grow old with without this disease. I wish he could have his memories. But most of all I wish nobody else has to go through this. I wish we had a cure or hope for a cure.

Princess Weekend 2017 - 10k and Half

So it's been a while since the race...a long while...I know....

Here's a quick photo recap and some thoughts on the races.

For the past couple of years we have kept with our Alice in Wonderland theme. Lorren and I typically run this race together and usually at some point she curses me out. 

We had our own cheering section on the Boardwalk this year. The whole crew came down in their jammies to cheer us on. I cannot tell you how many friends of mine that were running the race said they saw my crew. 

It was a good race, we pushed but not too hard since the half would be the following morning. 

Now onto the half! For the past few years there has been a group of guys that run dressed as princesses. They are total studs and we have had our eyes set on finding them and taking a photo with them. I knew they were going to be in my corral so I would be able to sneak a photo, but they were hanging near the front when we first arrived. Lorren and I jumped at the chance to score a photo with our favorite, Jasman. 

I knew it was gonna be a good race.

The race started a little late because traffic was awful, but when it did, I was good to go. I took off nice and steady and kept the same pace for the first 10k of the race. 

Then it was game on. For the last half of the race I kicked it into high gear and pushed. I had a goal and I wanted to hit it. I wanted to be under 2:40 and my ultimate goal is 2:30. I came in at 2:37 and change. It was huge!

Best part of hitting your goal? Having those you love at the finish! Scott met me to give me my medals and my parents and kiddos were there too. After Lorren and Cathy finished we all had our celebratory beers. 

This is the first time my Dad was at the race and I loved having him there. Even though he was a little peeved about the shirt we picked out, I adore this photo. 

Next up is Star Wars this weekend. If you follow me on my Facebook page check in for photo updates! 

Princess Weekend 2017 - Expo & 5k

Ah Princess weekend. The weekend where my sister, niece and I descend upon WDW for a weekend of running, popcorn, and shenanigans. This year my parents joined in on the fun and my brother happened to be there as well for a golf trip. 

Day 1 of our journey happened to coincide with Cathy's birthday. To celebrate we enjoyed some southern fried goodness and hummingbird cake at Art Smith's Homecoming in Disney Springs. The food here is beyond delicious and I am still slightly traumatized by the speed in which my niece consumed deviled eggs. 

After dinner us girls headed to the expo to pick up our packets and shop (naturally). This is the latest we have ever gone to expo and it was fabulous. There was nobody there. We literally walked right up to everything. 

We didn't even wait to take our picture with the sign. Whaaaat???? The three of us are perfect glass slipper by the way, just in case you wanted to know that fun fact.

The theme this year was Beauty and the Beast so naturally Lorren and I had to snag this pic....

To tell you how empty the expo was, we were able to get a photo with Rapunzel...

...and the rose from Beauty and the Beast...

It was early to bed though because we had the 5k the next morning, but that didn't stop Lorren from challenging me to a plank off...

Guess who won? Hint: not Lorren.

The 5k is a favorite for us because it is just really chill (not timed at all) and we just walk and have fun.

We also wear our Peggy Sue shirts for this race. If you have been with RunDisney for a while you know all about her. She was our favorite spectator and it is just not the same without seeing her on the course. 

After the race we met up with everyone for breakfast. I was even able to snag a rare photo of this guy smirking.

I cannot even begin to tell you how much it meant to have my Dad there for race weekend. The three of us have been raising money for Alzheimer's research in honor of him and it just means so much to have him there. 

I'll have more posts covering the other races in the coming days. 

Adieu. Aufwiedersehen. Gesundheit. Farewell.

When my phone lit up this afternoon and I saw the news of Gene Wilder's passing I was saddened. Willy Wonka has always been a favorite in our home. Then I discovered he had been living with Alzheimer's for the last three years.

Damn.

The statement from his family described this disease so perfectly. “The decision to wait until this time to disclose his condition wasn’t vanity, but more so that the countless young children that would smile or call out to him ‘there’s Willy Wonka,’ would not have to be then exposed to an adult referencing illness or trouble and causing delight to travel to worry, disappointment or confusion. He simply couldn’t bear the idea of one less smile in the world.”

Reading that statement made me think of my own family. We haven't exactly hid my Dad's Alzheimer's from the kids, but we haven't exactly spoken about it in great deal to them. How do you explain this disease to 8 year olds?

When my parents came down for the summer I knew I would have to tell the kids something, and thankfully, Dory was there to help me. How do you explain Alzheimer's to 8 year olds? You compare it to Dory. Sometimes he will forget what you just said, sometimes he will ask you the same thing, I mean he may call you Fabio...well maybe not.

We had a good summer with him. Granted there were definitely days that were worse than others, but the kiddos were none the wiser. He was just Dory and sometimes forgetful. This summer we were lucky. To echo Wilder's nephew in his statement today, "...we have been among the lucky ones – this illness-pirate, unlike in so many cases, never stole his ability to recognize those that were closest to him, nor took command of his central-gentle-life affirming core personality. It took enough, but not that.”

I am cherishing my moments, as I hope everyone in this community does.

To you, Mr. Wilder, thank you for the laughs. I hope you and Gilda are laughing somewhere over the rainbow.

via GIPHY

To my Dad, I love you and your Dory moments.

"Adieu. Aufwiedersehen. Gesundheit. Farewell."

Thanksgiving Thursday

For those of you that don't know what Thanksgiving Thursday is, it is the one time during the week where you stop and basically count your blessings. Even if you've had one of those weeks, I promise you can find at least one thing to be thankful for, no matter how big or small.

This week I am thankful for...

• Scott who held down the fort while I worked all weekend. 

• Aaron's AMAZING catch at the game last night. He was catching and caught a foul.

• Jillian and her love of Isabelle (the American Girl). Her love has made her want to read the books without being prompted. 

• Family all around us.

• An amazing group of friends and family that have helped us with our fundraising goal for Alzheimer's research. On October 19 my sister, nieces and I launched a page with ALZ Stars to raise $7,800 for Alzheimer's research in honor of my Dad. 

• An awesome group of parents and kids that we have come to know through activities and school. The kiddos have some awesome people around them. 

• A boss who makes caramels and brings them in. Also, a boss that does not judge you when you eat close to your body weight in said caramels.

What are you thankful for this week?

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.