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.

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."

Ted's Princesses Take Over Disney Part 3: That Time We Ran 13.1 Miles and Raised More Than 8k for Alzheimer's

Back in the fall my sister began researching ALZ Stars because since our Dad was diagnosed with Alzheimer's we have wanted to support the cause. There were several calls/texts/emails between us trying to figure out the magical number of what we would raise. We decided on $7,800 since he was turning 78 that October. Our mission was set and the four princesses began the process of not only training, but fundraising. 

One of the cool things about fundraising with ALZ Stars is that we were able to represent this amazing organization by wearing singlets on race day. This photo kind of sucks because it's blurry, but you get the idea.

This was also the first time the three of us completely separated for the race and the first time I went left while Cathy and Lorren went straight to get to our corrals. I landed myself in corral H for this race and could not believe it. It was such a small corral!

Lorren was behind me in I and Cathy was in K. I knew where I wanted to end up and tried to stay near the 2:45 pacer. My best time for a half marathon is 2:42 and change and my best time for princess was 2:55 and change. I was confident that I could beat one or both of these times. The corral was small, the weather was great and I had to do it, not just for myself but for the cause. 

Melissa was going to be on the course cheering us on and thanks to the magic of text alerts would be able to find us easily. Plus we were all head to toe purple, we couldn't be that hard to miss, right? I found Melissa at the transportation and ticket center but I was completely on the other side of the path. I did the crazy wave and kept going. Lorren managed to snag a picture with her when she passed.

One of my favorite parts of this race is running up Main Street. There is just something special about running towards the castle with a ton of strangers cheering you on. 

Once I hit the 10k mark I knew I was picking up the pace. 2:45 was a definite possibility at this point, now I just had to hold steady to come under 2:42. I was able to keep cruising along on that back stretch, which normally if you're in the corrals further back is a hard feat. Normally during that 6.2-7.5 mile stretch you are walking. Thankfully, we were all running at this point. 

The sun was starting to come out around the 15k mark and it was starting to warm up. The on ramp at this point is my least favorite part of the race, but I had to push forward if I wanted to hit this time. I gave the drill sergeant the side eye as I jogged past and pushed forward. Cresting the hill I heard Bruce Springstein telling me that "Baby you were born to run" and I pushed forward. I only had a mile and a half to go and I was ready to be done. 

As I approached the back side of EPCOT I sent Melissa a text to let her know I was on the way. Her response? "You're too fast! I'm not there yet!"

I clipped through EPCOT glancing at my Garmin every couple of minutes. I knew it would be close. As I came down the stretch I put everything I had into my finish. Arms raised as I crossed I was proud of myself. I didn't beat my best time, but I only missed it by seconds. I came in at 2:43:04 which is not bad seeing that I raced the previous two days. But the best part? Having Scott there at the end to give me my medals. 

I met up with Melissa and we waited for our other princesses to cross. Lorren was next and we celebrated with some beer and champagne. 

It was really starting to get warm by this point so we hung out in the shade and waited for Cathy. Fun fact, Cathy met up with another ALZ Stars member, Kayla Anderson along the course!

This was actually really cool because ALZ Stars is not one of the official charities of the race, so it is not a common one that you would see. Normally you see Children's Miracle Network, Team in Training and oh gosh...some other one that I cannot think of. 

Once Cathy crossed we were ready for some kit kats and champagne, the Bednarek girl tradition.

We also Skyped with Mom and Dad, which is never dull. Dad asked at least a dozen times is we had been drinking. Well, yeah.

And yes, this is how my parents Skype with us. You could probably hear us giggling. 

After we cleaned up we headed to EPCOT for a celebratory German feast at the Biergarten. But first we had to take favorite "all the medals" photo. 

And yes, we wore matching shirts that said "Run Your Shells Off." 

I still cannot believe we raised more than $8,000 for Alzheimer's (we can always raise more though, the link is still live...hint hint). Thank you to everyone that contributed and shared our page. We could not have accomplished this without you!

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.

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 want to reflect on my Grandma. She passed away two years ago and was such a huge part of my life.

I am thankful for...

• Mornings at my grandparents house that were filled with pancakes in any shape I wanted and lots of bacon.

• Her blatant attempts to make me a domestic goddess. Playing often included pretending to do laundry (she would make a clothes line for me by tying string to chairs), pretending to iron and pretending to cook in my play kitchen. 

• Days when we would bake. I have the best memories making kolacky with her. I would use a baby spoon and put the filling on the dough and she would pinch them shut. She also gave me the scraps to roll out. I remember how easy she made it look and how not easy it actually is. One Christmas I threw the dough at the wall. I often wonder if she did the same thing when she was first making them.

• The mornings she would give me coffee in a little juice glass with ice cubes so it wouldn't be too hot.

• Playing cards with me. We always played go fish, old maid and solitaire.

• The letters we would write each other when I was away at school.

• Her attempts at teaching me to sew, crochet and cross stitch. None of them stuck. 

• Her always filled candy dishes.

• A gift that she gave me that I will cherish more than she could ever know. She gave me the cross my grandfather gave to her for their wedding. I wore it on my wedding day and hopefully one day Jillian will wear it on hers. 

• The times she would give up her cream of broccoli soup at Venice Restaurant and eat my chicken noodle soup instead.

• Giving me the love of the extra crispy pieces from Long John Silvers. 

• Marrying my Grandpa Ruhling and giving all of us the chance to have a grandfather in our lives (both of my parents dads died before the majority of us were born). 

I miss her every day and try to remember the good times as much as possible. In her later years Alzheimer's set in and made the once fun-loving Grandma I always knew a completely different person. I hope she is living it up with my grandfathers and smiling down on us.