Thursday, June 26, 2014

A Life Lead By Love


Sometimes I take my mom out, but these outings are becoming few and far between as she progresses through Alzheimer’s disease.

Chinel, Mom’s hairdresser, has been cutting her hair for years. She knows my mom well and has a level of patience and understanding for her that is hard to come by these days. We keep her routine as easy and as simple as possible. Even if she doesn’t outwardly recognize Chinel or remember the salon, somewhere deep inside her she seems to know that she is in a “good” place. Once in a while she will make a comment that makes me realize that all is not lost just yet. “This place, I know…” is sometimes all she can get out, but just this, a spark of recognition, gives me a feeling of accomplishment.

After getting through her last haircut, she was visibly tired. She was not talking about the lady in the mirror. She was not cooing at the pictures of Chinel’s children. Mom was fairly quiet. After a warm hair washing and head massage, she was exhausted.

Soon enough after the haircut, she perked up when I told her that the kids and I were taking her to lunch. This was exciting and she was hungry. Off to what she once called “the best bird in town,” Chick-Fil-A. It was busy. The drive thru traffic was almost out to the street. There was a long line inside. This kind of stimulation, crowds of people coming and going and making noise, can be overwhelming for Mom. I carefully led her to a table, all the while talking with her to help sooth her and help her block out the chaos. There were stares from adults and children.

My kids were wonderful, very patient. We found a table and they sat and talked with her while I ordered our food. I came to join everyone and we talked some more until they brought our food over. The kids are old enough to handle their own food preparation, but my mom is no longer able to deal with food on her own. I placed an unfolded napkin on the table and then put her chicken nuggets on top of the napkin. The contrast of the brown chicken against the stark white napkin is what enables my mom to see her food. With the chicken pieces simply piled in the box, she is not able to recognize what it is or what to do with it.

She can no longer use utensils, so a place where she can eat finger food is a perfect choice. Even with making these accommodations, I still had to place the first piece of chicken in her hand and gently guide it to her mouth. She asked permission to eat and asked if she was doing it right. You see, she still somehow knows she is different, a stranger in a strange world. She needs constant reassurance, so I reassured her that everything was perfect and there was nothing to worry about. More stares.

I got up to grab some more napkins and when I came back my son was helping her with her drink. She was not able to recognize that there was a lid and straw on her cup. She was attempting to drink through her lid. Even after my son had helped her, she frequently was confused and either trying to drink through the lid again or clumsily trying to get the straw in her mouth but instead sticking it up her nose or into her cheek. You can imagine how that drew stares.

She didn’t like her drink. Although she always gets lemonade, this time she did not want it. Up I went to change out her drink.

After a while, we all finished our lunch and it was time to head for the door. The place was packed. Despite me walking her, hand around her shoulder, leading her slowly, step by step, people were not moving. An, “Excuse me,” usually worked, although some I had to tap and ask to move, just to get her out the door. All the while I am navigating her steps, explaining whether she needed to step down or if there was uneven ground for she no longer has very accurate depth perception. She cannot tell if the simple change in tile color is just that or a drop-off.

I have almost learned to tune out the stares, yet I can feel them. The eyes watching, wondering what is wrong. Surely wondering what our relationship is to each other, guessing the reason we act as we do. We have all done it. All of us have stared at people who are different in some way.

Here is what I ask you to consider. People with Alzheimer’s disease are in their own world. That world may include people and things we cannot see, conversations that we cannot hear. They are mostly fine while existing in their world. But the second you approach them, put a hand on their shoulder, or talk to them, they suddenly have to find a way to fit you into their world, a place in which you did not exist a second ago. Take a person with Alzheimer’s to a different surrounding, with lots of activity and noise, and you can multiply that dilemma 1,000 times.

Stare if you need to. Ask me questions if you want to. Offer to help. Be patient, but most of all, be kind. This world, with a mom who has Alzheimer’s, is not an easy place for either my mother or for those who love her. Please understand that she did nothing to deserve this terrible disease. But she has it, and she is doing the absolute best she can to live the life she has. You or someone you love may have a similar life one of these days. We could use some people who understand and want to help instead of people who just point and stare. Live a life lead by love.





Wednesday, May 28, 2014

That Day


This weekend I had my first book signing at Black Dog Books in Zionsville, IN. My story was chosen to be featured in the book Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias. The day was stressful and strange from the beginning. The thoughts - “Am I really signing books for people? Will people, other than family and friends, show up?” - crossed my mind many times. The answer to both questions is “Yes”, and that outcome will forever affect me.

After setting up this book signing, I quickly realized I had no idea what to do for a book signing. What was expected? What was protocol? Were there rules? (I am all about the rules.) Other than making sure I didn't stink, knowing that I should bring a pen with which to sign said books, and to pray that someone showed up, I had no idea what to do. I was a rookie. So, I did what anyone from 2014 might do - I Googled “What to do for a book signing.” Dorky yes, but helpful, too.

My search told me I should use a permanent archival quality pen that was not black, because this would make a statement and not ruin books. I learned to be sure that I sign the date, because signed books are worth more money the closer they were signed to the release date of the book. (I am sure that people will be fighting each other in 50 years for this book signed by me!). The article told me where to sign the book and warned me not to use my legal signature, as it might end up on the internet. You wouldn't want someone to be able to use your signature for identity theft. I needed to have something to drink, preferably water. I was not to serve candy, as that only attracts kids, and kids don't buy books. Finally, I was to practice my “new” professional signature and to make sure that I have some catch phrases ready to use for when I am signing books. You see, I might become overwhelmed with the sea of folks wanting my autograph and would need something catchy to write.

Off I went to Michael's to pick up two purple book signing worthy pens. My sweet husband helped me have bookmarks made up to include with the books. These included my blog site, Facebook page, and Twitter handle. I figured out my outfit, wrote down my catch phrases, practiced my signature, and waited for the big day.

Saturday came and my first responsibility was my daughter's soccer game. This happened to be her last game, so I didn't want to skip the game to get ready for the book signing. I got up early, got myself ready and fifteen minutes before we were supposed to leave to get her to her soccer game, I realized that my son and husband were downstairs hanging out, still in pajamas. My son had not been fed breakfast and my daughter was still in bed sleeping. All of a sudden a tornado of waking, feeding, and getting dressed swept through the house and somehow we managed to get to the game on time, although my blood pressure was sky high.

At half time, I decided to go home to freshen up, change my clothes, and gather everything I needed for the event. My husband called to say that he was running by Kinkos to pick up the bookmarks and that he had corrected the “mistake” that had been made on my Twitter account name. He is not on social media and did not realize, while trying to be helpful, that he had messed up my Twitter account name and, in turn, the bookmarks would all be printed wrong. Nerves already shaky, I hung up the phone, cried for about two minutes and then realized I had no time for tears. I had to leave soon to be there early enough to talk to the owner of the book store, to the Alzheimer's Association representative who would be there, and to get set up.

Off I went, a half hour before the signing, to make a quick trip into the Village of Zionsville, a drive that usually would have put me in the store five minutes later. I had somehow forgotten and not factored in the fact that the Brick Street Market Day event was going on in town and this meant limited parking. Twenty minutes later, after lots of circling, calling my husband (as if he could magically, over the phone, make a parking space appear), I found a place to park. I parked the “land barge,” ran blocks in my wedged heels and made it there just as I was being called on my phone because they were wondering where I was. Deep breaths and the zen, cozy feeling of Black Dog Books helped me calm down and focus on what was ahead.

I sat down in one of the red leather chairs in front of the fireplace, gave Sophie the “black dog” a few scratches, and got myself set up and ready. No sooner had I sat down than someone came in to buy the book. Whew, at least one person was buying a book, right?

The four hours that I spent at Black Dog Books went quickly. Friends, cousins, aunts, uncle, and in-laws all showed up to show their support and get their books signed. Tania, the owner of the bookstore, had lovingly made homemade chicken soup for the chilly day. The soup even yielded a heart-shaped bay leaf that seemed to be a sign to all of us. Taking care of my mom, who suffers from Alzheimer’s, writing our stories, sharing those stories with the world, all while people supported me throughout, was a journey that could not have succeeded without a courageous heart and a whole lot of love. Those moments of chaos that morning were of no matter, there was something bigger happening.

Among the familiar faces that came in that day were many I had not known, at least not before they came to the store. People I didn't know were buying three books at a time. They wanted them signed for sisters and brothers, for caretakers and parents, and for themselves. They had seen the article in the paper. Their friends had told them about my blog. I was being talked about and in a good way! While I was signing their books, I was also able to talk with them. I heard about the heartbreak they suffered because of the disease. They shared the guilt that ate away at them for not being in the same town as their loved one who suffers from Alzheimer's, and feeling as if they were not doing enough. They told me about their sadness and their worry for a parent who wouldn't give up any of the caretaker responsibilities. They asked questions. I listened and let them know I understood everything they were saying. I. Got. It.

Every story in the book, every story I heard that day, was familiar to me. Every single one. They were all relatable to our ongoing struggle, but it wasn't about the book. Today I got the bigger message. That day was not just about people supporting me, it was also about me supporting others. I give support through my stories, my blog, my words. People hear about my mom's journey with Alzheimer's disease and they can relate. Although all of our journeys, filled with stories of and struggles with this disease, are our own, there is something comforting in knowing that we are not on our own. All of us must work together to win the fight to remember.



If you would like to help the fight against Alzheimer's, please click on the following link. It will direct you to the two events that I will be participating in. Any little bit will help. Can you give up your Starbucks for a day and donate $5? Help me, help my mom.

http://act.alz.org/site/PageServer?pagename=bvb_eventList


Thursday, May 1, 2014

Butterflies and Fireflies


I read a blog post this morning by Hands Free Mama, Rachel Macy Stafford. Her post “Children Who Shine From Within” has touched me. I cannot get it out of my head. I cannot shake it. I ask that you read her post before you read mine, so you can understand the references I make.

I have a firefly. Actually, I have both a butterfly and a firefly.

My butterfly lights up a room the second she walks into it. Her smile, energy, and passion for life are contagious. You cannot help but have fun around her simply because she is having fun. When we lived in Colorado and she was just a little thing, not even a year old, we attended church on Sunday, two kids in tow. Our son was well behaved. He read his books, ate his snacks, and as a baby, simply slept with his little head resting on my shoulder. Our butterfly was very different. We would walk into church and she was immediately excited. She was not excited about sitting and listening to the homily (sorry Father Steve) or the music. Oh no. She was sure there was a party going on and all of these people had gathered there to hang out and party with her.

My beautiful butterfly believes that the majority of your day should be spent having fun and, honestly, who can blame her? School is fun (thank goodness). Her friends are there! She learns new things! She loves her teacher! She wants to be a teacher too! My butterfly is good at sports and catches on quickly. She loves to read, dance, do art, sing, play with her friends, help her Dad with stuff in the garage, talk with her Mama and tell her stories, go out to dinner and go, go go. She has the energy to match her list of interests, too.

Like a butterfly, my girl loves to look good. She can't resist painting her nails, begs me to curl her hair, and loves putting outfits together. But don't tell her what outfit looks best or what color to paint her nails. Oh no! Her wings have been spreading since I can remember. Things must be figured out by her, on her own and then must be done by her, with as little help as possible.

I took her ice skating, for the first time, when she four or five years old. The management had placed large orange construction cones on the ice that the kids could use to hold onto. This would help them balance while they learned to skate, and the cones pushed smoothly across the ice, allowing them to skate without Mom or Dad having to hold their hand.


My son gladly took one and was off. He felt like a stud even with an orange cone. Would my butterfly use the cone? No, in fact she was furious at the suggestion. I offered my hand and said that I would help her. As the tears streaked her cold and rosy cheeks, she let me know how angry she was. Angry that I had suggested the use of the cone. Angry that I was at her side offering to hold her hand and teach her how to ice skate. No. She was furious that she couldn't automatically skate. She was going to figure this out on her own and I was not to offer help. As she clung to the wall around the rink, I backed away. Far enough away so she had room to spread her butterfly wings and figure this out on her own. Full of determination, she slowly circled the rink, testing her balance, scooting those tiny skates along. If she fell, I was there to swoop in and help her up, despite the tears and the demands to let her do it herself. And she did. Soon enough she was off of the wall, though inches away, slowly scooting and skating around the ice rink. Huge grin on her sweet face, proud that she had done it herself, with no help from Mama.

My butterfly flits into a room and right into your heart.

My firefly has always been cautious. He enters a room and sits back and takes it all in, watching, waiting. Observing and deciding who and what is safe, at least in his mind. Then he has to make the decision of whether to let you in, into his circle of trust.

You must be somewhat like him, to be part of his pack, allowed into his circle. Kind. You must be kind. He is one of the sweetest, most genuine people I know, and he cannot stand to see others be mean. Not only can he not stand it, but he truly doesn't understand it. He doesn't understand why someone would deliberately say or do something that would hurt someone else. And when I say he doesn't understand it, I truly mean that. He sees no reason for it and it shocks him that people could even consider these unkind gestures.

The kids who he calls “popular,” although I am not sure he grasps the true definition of the word, are the kids who are loud and boastful. They brag. They push and shove and they have no awareness of people around them. They bump into you. These kids want to be noticed and not always for things they have accomplished and should be proud of. To him, these kids want to stand in the spotlight no matter what. He just wants to do his own thing- no stage or spotlight needed.

You don't like what he likes, so what. You're really short, he is average. You play baseball and he does Brazilian Jiujitsu. Macaroni and cheese is your favorite dish and his is beer butt chicken. Eleven years old and still can't swim? Doesn't matter. My firefly likes you for who you are. The real you, not the “I like him because he always wears Under Armour” you.

Just like everyone else, he wants and needs praise and validation. Tell him he has a cool shirt on and it will make him feel good. He just doesn't have to have the praise from everyone. Congratulate him on doing well on his science project, he feels awesome. Even give him a ribbon because it won a contest, great, but don't make him go in front of everyone to receive it. For him and his pack, in his circle of trust, knowing is enough.

My firefly says he doesn't want to be noticed. In his mind, being noticed means having to get in front of a crowd and sing, dance, or perform in some manner. It means you get straight A's, can sink a three and are really tall (you know, like 5'3” at the age of 11). If you are noticed, then someone might see the things he doesn't want you to see. That he is different.


My firefly is different. I explain to him that his being different is what makes him so wonderful. We are all different. At 11, this kind of comment is seen as something a Mom has to say. To him his differences are a bad thing, to us they are his uniquenesses. They are why we love him so much. He wants to hide those differences. My firefly is hiding in the dark, his light blipping on and off. Almost as if he is the child running barefoot through the dewy evening grass to catch that firefly. Holding himself, the firefly, stifling his own light, not realizing the beauty of its' luminosity. Waiting for reasons, unknown to us, to release that light and see it with his own eyes. But only when he is ready.

I and so many others see his bright light. It is steady and dependable. His light illuminates from within, deep within his soul, his kindness, curiosity, and authenticity radiating outward. Fireflies sometimes are hard to find. You see their light and then it's gone, flickering. Is it enough to catch your eye?

The butterflies. Let them spread their wings. Praise them for their beauty, but also for their hard work. Butterflies can brighten our day with their mere presence, but don't forget the beauty and mysteriousness of fireflies. A firefly's light brightens even the darkest nights. Let them know that you see the radiance of their light, no matter the time of day, no matter the number of butterflies that are around, and their light will always shine bright. There is room for both butterflies and fireflies in our lives.

Friday, April 25, 2014

The Truth


If you are reading this there is a good chance that you know someone who has Alzheimer's Disease. It may even be you. If you are reading this because you have stumbled on it, or you know me, or someone asked you to read it, then I ask you to read with an open heart and an open mind, or with as much of it that wants to work today. (Yes, we can joke about the disease.) I am going to toss some facts at you. Facts that are important but that can be downright terrifying.

People react to Alzheimer's today as they reacted to cancer decades ago. People often do not want to talk about it or admit that is has taken hold of someone they love. Yes, Alzheimer’s is scary. It is awful. It is a thief. It empties the mind of memories, it stops mental processes, and it steals life's moments and meaning. When it affects a loved one, most of us will do what is human. We will be fearful. We rightfully fear the disease, but fear may lead to ignorance and ignorance to denial. We cannot allow ourselves to be in denial. We cannot allow ourselves to pretend that Alzheimer’s is not happening.

Take 75 sec and watch this video. https://www.youtube.com/watch?v=waeuks1-3Z4

You done? While watching that video, at least one more person developed Alzheimer's or dementia. Do I have your attention now? In another minute and 7 seconds another person will be afflicted. And another, then another, then another …. It never stops. Never. Read on, please.

There are more than five million people with Alzheimer's in the United States at this moment and my mom is one of them. Having faced the effects of this disease head on, I have learned that most people have very little true knowledge about Alzheimer's disease. They think that victims somehow just become more forgetful. Actor Seth Rogen recently went before a United States Senate committee and stated that before he knew his in-laws, he thought that the disease showed itself via “...forgotten keys, mismatched shoes and being asked the same question over and over,” which he admits is because this is how TV and movies portray the disease. This lack of knowledge by the public at large hurts us all. The disease has become an epidemic.

I know how this works. Whatever tragedy, crisis, or disease that happens to have personally struck you or those close to you is what you pay attention to. These are the causes that we usually are willing to back: to donate money, to go on the fundraising walks, to take part in the golf outings and silent auctions. And I know that we are bombarded with requests for money for charity events all the time. After a while, none of it seems important anymore; the calls for action are just so much noise in the constant roar of information.

Am I saying that Alzheimer's Disease is more important than any other disease? Absolutely not. Each disease brings its own stories of tragedy, heartache, and pain, but among the stories are tales of individual triumphs over the diseases by people who go on living. Right now, those with Alzheimer's do not have that option. Alzheimer's Disease cannot be prevented, cured, or even slowed down. There is no happy ending. Ever.

My husband and I always tell our kids that if you are going to complain about something, you better be willing to do something to change it. I am willing to fight Alzheimer's head on. As part of that fight, I know that people need to gain awareness. Awareness of what the disease truly is. Awareness of its ferocity. So, what do I do?

I write. I write with brutal honesty about my mom and about my journey with her, our journey, hoping that my writing will resonate with others, will help some people feel less alone, will provide a no-holds-barred picture of how the disease savages its victims and leaves nothing but an empty husk. Brutal honesty, I said. I also write this way to help my soul heal, knowing that I am in the fight.

My writings are shared monthly through the Alzheimer's Association of Greater Indiana and also periodically on my blog. One of the stories I wrote about my mom is featured in Chicken Soup for the Soul: Living with Alzheimer's & Other Forms of Dementia, which is the latest entry in this series of publications on topics that affect all of us. I will have some book signings locally that will help raise money and awareness. My first one is May 17th at Black Dog Books in Zionsville, IN.

This summer my family will be participating in The Longest Day and I have signed up for Blondes vs. Brunettes. Don’t know what these things are all about?

The Longest Day is a 16 hour fundraiser, which is on June 21 this year. Before you think, “No way. I can't do anything for 16 hours,” read on and all will be explained. What really drew me to this event is that it can be done with people all over the country. Participants do not have to be in the same spot at the same time. This is perfect for a family like mine. I live in Indiana, my sister is in North Carolina, and my dad is in Virginia. All of us will do this event, on the same day, for my mom, without anyone having to travel.

Okay, more explanation. Each team member picks an activity or activities that he or she will engage in during The Longest Day, but each person does not do the activity for 16 hours. The time is divided between team members. These aspects of the fundraiser appeal to all ages, skill levels, and interests. For example, my mom has always loved art, so my dad plans to visit an art museum in my home town, where my mom lived for many years, and see an art exhibit in her honor. I probably will walk and look at flowers and gardens. These are things she not only loved to do, but still loves to do. Because she and I now live in the same town, I plan to have her walk with me, at least part of the time. If somehow she could know what we are doing that day, she would love that we are able to find a way to actively involve her in the event.

Your team registers online. You and others are able to track your progress online. They can visit your page, donate, read stories, and gather information. You also can see what other teams are doing. What a fun and convenient way to raise money and awareness for Alzheimer's!

Because of my love of sports and all things active, I have wanted to do Blondes vs. Brunettes for a few years, but my schedule didn't allow for it until this year. It’s just a good old flag football game between women’s teams to, again, help raise money for and awareness of Alzheimer's. We will have five practices and game day will commence on June 28 at Eli Lily & Co. Colonel Field. Kickoff is at 1:15! I look forward to having some fun and walking away with a few bruises, all in the name of kicking Alzheimer's Disease's butt!

So, I ask you, what can you do to help raise awareness of Alzheimer's? If we want to defeat Alzheimer’s, we can’t sit on the sidelines and ignore the truth. This disease kills more people than breast cancer and prostate cancer combined and there is NO CURE. Almost 2/3 of Americans with Alzheimer's are women and 60 % of Alzheimer's and dementia caregivers are women. Nothing will prevent the disease or slow it from ravaging our loved ones' brains. And the cost? It is said that in 2014 alone, Alzheimer's will cost our nation $214 billion and that does not even include the $220.2 billion of unpaid care given by caregivers like myself.

Even if I don't want to listen to all the statistics, the dollar amounts, and the hours it takes to care for someone with Alzheimer's disease, I can't forget that one person who gives me the courage and determination to fight Alzheimer’s. My mom. Unfortunately, and like me, almost everyone will sooner or later have a connection to someone with Alzheimer's- a dad, a mom, a sister, a best friend, an aunt, a coach, a neighbor. Tick, tock, every 67 seconds there is another victim. Help fight Alzheimer’s and find a cure before that someone is you.

If you would like to donate to one of my causes, you can click the following links:

The Longest Day: Team “Lee's Legion”

Blondes Vs. Brunettes


Friday, March 7, 2014

The Thinking Box

We all have a place where we can go to clear our minds. A place where there are few disturbances and we are able to get through a thought without being interrupted. For me, those places have changed and adapted over the years as my life has changed.

When I was growing up, my favorite place to think, imagine, create, and just be a kid were the woods and creek in the back of my house. Give me some tolerable weather and I was outside. Breakfast in my little body, clothes on, and out the door I went, barefoot if at all possible.  I never wanted to wear shoes as a kid. My feet were tough. I could walk across our gravel driveway as if it was the lush green grass in our yard.  Sometimes my parents would try to make me wear shoes outside, but I learned to outfox them. I wore them out the door but quickly hid them along the path in the woods to be retrieved on the way home.

Out the door and onto the small worn dirt path that led me down to the creek.  Dirt, rocks and sticks under my small callused feet, poison ivy trying to brush my ankles, I would run down to the creek looking for my next adventure. Scaling rocks, wading in the water, making dams and chasing water spiders were always part of my mission. Alone on my journey, I tended to sing out loud, a performance for only the animals to hear. I would talk out loud to myself sometimes about what I was doing. Other times I was lost in my thoughts and ideas, working them out with only the birds to answer to.

As a moody teenager, I retreated to my room for peace. This was the place I could be alone. Music playing, I would lie on my bed and brood over whatever teenagers brood about, most likely boys, friends, school, and my parents’ rules. Sometimes I wrote in my journal, scribbling out my thoughts about why trigonometry and analytical geometry were so hard and so boring or trying to understand why “so and so” broke up with me. Life is hard as a teenager. There are lots of lessons to be learned, especially the lesson about how the world doesn’t revolve around you.

Years later I was living and working on a dude ranch in Colorado. The first year I worked there, I would go hiking on my day off.  Traipsing through the woods, backpack full of water and snacks, sometimes listening to my Discman (that certainly aged me right there). Hours worth of hiking through the mountains to clear my head and get myself ready to wake up and take care of the guests who were vacationing there that week. I don’t remember now what I thought about or what problems were that I solved, I just knew that each time I went out the warmth of the sun and the beauty of my surroundings healed me.

Fast forward about 20 years and now I rely on what I like to call, “The Thinking Box.” This is a place where the kids (mostly) leave me alone. I am not interrupted by their incessant need for snacks or by a phone ringing.  In this place I have solved some hard life problems. I thought of the idea for the first article that I wrote and had published in the CrossFit Journal.  Sometimes in The Thinking Box I have written blog posts in my head, posts that never made it into the light of day.

In the Box I can cry and no one can hear me - because sometimes a woman just needs to cry.  These cries are my own, not to be shared, just a release I need from time to time. My cries are hidden because the sound of rushing water washes them away.  The warm water also soothes my aching muscles after a hard workout, and somehow I also feel that the water washes away all the extra stuff in my head; the rubbish that has tried to stick to my brain, clouding my thoughts, weighing me down with doubts, and not allowing me to think clearly.  In the Box I can take a deep breath and say out loud, “Ok, let me think about this,” and there is a release. The junk is gone, at least for now, washed away and circling the drain. Now my mind is able to do the work that it needs to do. Thoughts, solutions, and ideas flow freely.


I don’t have a lot of time in The Thinking Box, maybe 15 minutes max. But those minutes are my minutes. No music, no phone, nothing else to distract me. Just the hot water beating down on me as I solve life’s problems and create new stories and dreams, all in a 15 minute shower. Thank God for a long hot shower.

Friday, February 21, 2014

The Imposters


It still happens weekly. She catches my eye. I see the short, beautiful white hair, the petite build, and I gasp. I recognize her. I know her. But then, after a longer look, I am plunged back into reality.

I see this woman taking walks, in the store, and just the other day, in a bar. Walking was and still is her thing, so that mistake is almost understandable. But a bar? She was never one to frequent bars. Either way, it doesn’t matter. It’s not her.

Despite the fact that my mom has been in a facility for years due to her battle with Alzheimer’s disease, something in me holds on to the woman I once knew. I am not sure why. Maybe it’s habit, because it sure isn’t hope. There is no going back from her disease.

When I see her “imposters,” I tend to gasp and have uncontrollable feelings of happiness and recognition. They are the sort of feelings you experience when you see a friend in an unexpected place. The quick feeling of joy and the slight adrenaline rush is quickly replaced with disappointment, sadness, and also a feeling of internal embarrassment.

Embarrassed because I have continually let myself be tricked. Tricked in an instant, even though I am very aware of the reality. I live that reality every single day. The reality that she must be in a locked down unit for her safety. Although she loves to walk, she certainly won’t be seen walking the trail in Zionsville, where many times I thought I saw her. She walks only at the facility.

To be in public and have that happen is tough. It’s a burst of emotions that tie my mind and heart into knots of confusion. Each time it happens, I try to recover just as quickly as it happens. I immediately begin an interior dialogue as I wonder why it happened. I ask myself how I could think that was her when I know, in my mind and heart, that it isn’t, that it can’t be? The instant joy, followed by disappointment buoyed on a layer of confusion and sadness, is almost too much to take in and process in seconds. But I do it, every week, when I glance and see a person who I suppose for an instant to be Mom.

I have never told anyone that this happens. It is one more entry on a laundry list of strange things that happen as I try to deal with my mom’s disease. It is just another situation that sounds crazy if I try to explain it. Stranger still, I sometimes think that, even if those moments are too strange to be explained, maybe they are not entirely unwelcome. For even if each moment is fleeting, and is inevitably followed by disappointment, for that instant I am so happy and excited to see the mom I once knew. A walk in the park, a day of shopping, having a drink at a bar are everyday experiences that we take for granted. When I think I see Mom experiencing life in the ways that I know she would be, if she only could, rather than fearing my momentary confusion, perhaps I will learn to accept it as a gift of imagination. Time will tell.

But for now I will settle for holding her hand, taking her on a walk around the ward, and helping her drink her lemonade at lunch. These moments soon will be gone, too. Though these times are different from the times we could have had together, they are the moments I now have with my mom. These moments are real, and I must cherish each one.



Sunday, February 2, 2014

Take Care


This first month of the year has been anything but what I had expected. Wrought with health crises, winter storms and broken “stuff.” You would think having 31 days filled, and I mean FILLED, with all of this could about break a person, yet somehow I have remained calm and fairly balanced. This girl, who has been known to be filled with anxiety, has managed to be anything but.

Yesterday I was thinking about why I have had such a sudden change. I don't have the answer yet, but these last 31 days have brought insight. This month has taught and retaught me lessons of love, compassion, and responsibility.


  1. If you feel like something is “off” with your body, you are probably right. This statement comes from my own personal experience, as well as what others have said. Examples of feeling "off" are aches and pains that you never had before, being tired all the time, and losing hair. Or maybe it’s just the feeling that something is off and your body isn't functioning as efficiently as it should be. Now, many people will make the excuse that they are older and this is probably the reason they aren't feeling quite right.. Could be, but in my case, as well as with some of my friends, it was not age, but something out of whack with the body. Don't make excuses, find answers.

  1. If you aren't getting an answer that satisfies you, keep looking. It took more than three years for me to finally get an answer to my problem. Three years of chronic fatigue, losing strength, and feeling off despite the fact that I was eating clean, exercising, and lifting weights. Doctors were telling me that I was fine and that it was probably due to stress. After three years, you start to wonder if you are crazy, if this is just how it is going to be. I finally switched doctors and explained to her what was going on the past three years. After a full blood panel, as well as a few other tests, I had my answer within a week. I am on my road to healing my body, but others are not as lucky. They do not have three years to figure it out. Some may have a week, a day, or only hours to get treatment. Press for an answer that makes sense to you. Not an answer that makes sense to your doctor or spouse, to you. Push for it. Trust your intuition. It could be a matter of life or death.

  1. What you do to your body matters - a lot. Two of the most important things you can do for your body are to eat well and exercise. I can see some of you rolling your eyes and saying “I know, I know,” totally annoyed at this statement. Still, research shows that diet and exercise are the most important ways to keep illnesses and disease at bay. Eat whole foods. Do not eat foods that are processed and filled with chemicals and hormones. Eat in moderation. Once you have fueled your body with healthy foods - move. I CrossFit, but I am in no way, shape or form saying that is what everyone has to do. It works for me. Find what works for you. Walk, ride a bike, swim, do yoga, or play basketball. Do one or do them all. Just move and keep moving. Make it a habit. You will be so glad that you did.

  1. Slow down. We are all so “busy.” Really, it seems that we are just busy being busy- filling every spare moment with jobs, activities, and responsibilities. Then we all are so exhausted that our “spare” time is plopping down on the couch watching TV because we are too tired to do anything else. Take the time to stop whatever you are doing and greet your spouse as he or she comes in the door. Sometimes we all want to quickly put the kids to bed. We are exhausted from the day, and we just want to have a glass of wine and watch Netflix. But what about that sweet little child who just wants three extra minutes with you. She just wants a short story or to tell you something that she forgot about her day. Maybe she just needs to be with you.  Stop, snuggle in close, breathe in the smell of your little one’s messy head because the day will come when these opportunities are gone. Put down the phone and pay attention. The real world is going on all around you. A world full of messy kitchen counters, kids launching monster trucks off their homemade ramps, dogs wanting an extra pat, and the cool silence of snowfall outside your window. 

  1. You are not alone. There are times in our lives when we have felt alone. We have hated something we have done. We can't imagine anyone liking the “real” us. Or maybe you are in a situation that seems hopeless. You are in crisis and need help. And while you are up to your eyes in poo, while you feel like no one understands, that no one loves you and you feel so alone, there is an army of people battering down your door, wanting to help you. This month, three friends and their families have been in crisis mode. It was time for them to drop everything- jobs, lunch dates, all those things that keep us busy- and focus on what mattered. And guess what? Each time they couldn’t do for themselves, their battalion of helpers showed up to do for them. Family, friends, acquaintances, and strangers were eager to help. Kids got taken care of, meals were made, hugs were given, prayers went out, and tears were shared. Breathe easy and know that you are not one, but instead are part of a great and powerful army that will fight for you any day you need them.

Put down your phone, turn off the TV, get off the computer, and pay attention to the life that is happening all around you. Don't put things off until tomorrow. Listen to your body and honor it. Feed your body and mind with the good stuff. When that bad stuff starts to creep in, know that your army is waiting to do battle with you and for you. People love us even at the times it is hard for us to love ourselves. We must do the best we can with each day we are given because we never know when this day may be our last.