Sunday, December 14, 2014

Reality- Part 2

And things change. After switching meds, her behavior had changed. She was groggy. The woman who used to walk incessantly was now shuffling her feet, and by the end of the day she was bent over at the waist, her body at a 45 degree angle. She had fallen, having tripped over the transition between the tiled floor and the carpet. Then there was another call; she had fallen because she missed the chair when she sat down.

My son and I joined her for her Thanksgiving dinner, and my husband stayed home with my daughter who was suffering from pneumonia. We could hardly keep her seated, even though it was hard for her to walk. In her mind, she was the woman who walks, the woman who checks in with the other residents, thinking she must take care of them.  I had to get her dinner so that she would stay seated. As long as I was feeding her, she was somewhat content.  But while my son and I were feeding her, she tried to grab the styrofoam plates and eat those as well.  Even writing it, it sounds crazy. Why would someone try to eat a plate? But one of the side effects of the anti-psychotic meds is increased appetite. She wanted to eat everything.

That evening, my son and I constantly fed her and constantly had to keep her from eating non-edible items - the plates, my fingers, her fingers.  If it was in front of her, she tried to put it in her mouth.  Luckily, my son took many trips to the dessert table to get her a cookie, and eating cookies kept her occupied

A few days later there was the phone call. She was going to be admitted to a geriatric psych ward. As awful as this might sound, it was a good thing.  She was going there to get her meds straightened out and hopefully to get the old “Lee” back, the mom I had  known just a week ago.

I was positive about this decision. We had gone down this road once before, and it had been wonderful.  It had worked.  This time the ward was in a different hospital, but she was to be treated by the same doctor who had treated her the first time.

But then I went to visit.

It was awful, not the place, but who she had become.  It was all I could do to not cry during the visit. Her skin looked paper thin. She couldn’t walk.  The same woman who previously could walk circles around you was in a wheelchair. I talked with her. I held her hand. Mom tried to talk with me as well, but it was as if there was a haze hanging over her. Her voice was softer, her speech was slower, and she had a hard time looking up. Her way of being seemed to be drug induced even though she was no longer on the meds.

The nurses let me stay a little later than visiting hours, but I had to go. I weaved my way through the maze of hallways to get to the exit and out to my car. Staving off the tears, “Just make it to the car. You can do it. Almost there.”

And then I lost it.

I called my husband and explained the situation. He let me talk. He let me cry. Through my tears, I explained to him how alone I felt. Alone because nobody was living this hell with me. I was taking this on alone. I was visiting her. I was taking the calls about medicine. I was showing her that her family and friends love her, despite the disease. He told me he was sorry. Sorry that I had to deal with this. Sorry that I felt so alone. And sorry that he couldn’t fix this for me.

And then I put it out there.  I told him what I was truly feeling.  Seeing my mother tonight, in that condition, I felt as if I could see the end. And I was in no way ready for it.

Wednesday, December 10, 2014

Reality- Part 1

Being a caregiver for an Alzheimer's patient is tough. Even tougher when that person is someone who you love. Few people, unless they are a caregiver, truly understand what it means, what it takes. Others don't see the constant paperwork you have to deal with. They don't see the tears because you hide them – you don't want to cry in front of strangers. They have no idea of the patience it takes. And the strength. It takes so much strength to get through each day.

I have written about it over and over, all of it, but especially about the pain. The pain of seeing my Mom wither before my eyes. The loss of who she was and watching her turn into who she is now. The pain of never knowing what I am going to experience when I go visit. Will she know me? Will she let me visit with her? Will she be sad, confused, frustrated, and cry or will she be happy and want to walk and dance with me? It is a game of chess in which Alzheimer's disease is always one move ahead.

I have come to deal with my new normal as well as anyone could. But one day I received a phone call that changed my life again. A friend wanted to talk. But I noticed that the voice on her message wasn't her normal cheerful, bubbly voice. I called her and after some small talk, she finally got down to business. She described what had been going on with her mom lately. Everything, and I mean everything, sounded familiar. It took me back seven or eight years in my own life. Every one of her stories sounded like an experience I had with my mom, and my heart broke.

I did my best to be as supportive as possible. I told her what I knew. I suggested steps to take, and described what my sister and I had done for our mother. I commiserated, and I told her to call me whenever she needed me before I hung up the phone. And then I cried. I cried for my friend. I cried for her mom. I cried for her family. I know what they face - the struggles, the decisions, the heartbreak. No one wants that for anyone, and especially for a close friend.

In my head, I was now ok with, had come to grips with, where I was with my mom's disease. I had accepted it and the life we had, but somehow I still thought that it shouldn't happen to others. The immensity of the disease rattled me once again. My friend's mother was now suffering from the disease. Not a grandparent, which seemed to be the norm. I was accustomed to hearing about parents, including my own dad, taking trips, going to concerts, watching the grandkids, but not suffering from Alzheimer's.

My journey with my friends and Alzheimer's was not over. I had another friend out west whose mother-in-law was suffering from Alzheimer's. Her mother-in-law had been diagnosed a while after my mom had. My friend and I had sent many texts back in forth. We shared good days and bad, asked questions and offered support. And then it happened. Her mother-in-law passed away. Before my mom.

How could all this be happening? The reality of the situation, my situation, my friends situations, took a toll. I wasn't ready for my friend's parents to die. I wasn't ready for their parents to be diagnosed with dementia and Alzheimer's and I certainly was not and am not ready for my parents to die. I am not sure, no matter the circumstances, that anyone is really ready for a loved one to die. Sometimes we come to accept that it is inevitable, but I was not at that point. I still am not.

I cannot imagine my life without my parents. I don't want to imagine life without them, but unfortunately it is becoming more a reality each day, especially with my mom.

To be continued...

Tuesday, December 2, 2014

Break Is Over.

I can hear the lifeguard whistle blowing, screaming out, letting us know that break is over. Tan, gangly little bodies running and launching themselves in to the pool because that 15 minutes was torture. As a kid, having to sit and wait and watch the old people swim laps without getting splashed was so boring.

So here I am (not tan or gangly) launching myself back into the writing pool. I took a break and I am not sure why, but I guess I needed a rest. 

I use writing to process feelings, to heal, to empty thoughts and ideas out of my head. I haven't stopped needing any of those things, but up until tonight, I haven't taken the time to sit down and write.

You may see a blast of blog writings in the next couple of weeks. I have a lot to say, a lot to release and I must take the time to do this for my own sanity. Here we go...

Monday, September 15, 2014

Stop It

It is almost impossible to avoid the media circus after what has been going on with the NFL and some of its player, even for someone like me who chooses not to watch the news. These issues are everywhere-the news, social media, ESPN, during the games and people are talking. And it doesn't stop there. We get to hear, hourly, how people in our own communities have decided to hurt each other.

I am not going to voice my opinion on what coulda, shoulda been done with these organizations, individuals or these situations. What I have to say is simple and goes out to everyone-men, women and children.

Stop hurting others. Do not hit, punch, kick or otherwise physically or mentally hurt someone or something because they didn't say or act like you think they should have. Punching someone isn't going to make them love you more or straighten them out. Shooting a person does not solve a problem, but instead creates more problems. Kicking a dog won't make it listen to you. Dumping a bucket full of urine and feces on an individual does not make you cool. Hitting a child and them telling them not to hit others is hypocrisy. Rumors and gossip hurt. Filling your own head with constant judgement breaks your own spirit.

Do the above statements may sound familiar? I am sure they do, but what can we do about it?

Help each other. Help yourself. Lead with love. Forgive. Throw away those judgments you've been holding on to. Stick up for others. Practice acceptance. Make a phone call. Intervene. Offer to listen. Share a phone number or website. Get over your pride and embarrassment and do something. You could save a life.

Below are some hotlines or links that could help. There are many others out there, find them and use them.

Monday, August 25, 2014

Solving a Riddle

Alzheimer’s disease is a conundrum, a riddle, and like any puzzle, it can be tough to solve. Just when you think you have it figured out, it shows you how wrong you are. The symptoms of Alzheimer’s disease affect its victims differently. Ask my mom where she was born and she couldn’t tell you. Ask the Alzheimer’s victim sitting next to her and she will tell you where she grew up and the names of her siblings, yet this same person may believe that a doll is her baby, or she may talk to and reach out to objects we cannot see. And why is this person affected and not that one? We don’t know. That is a puzzle that is still unsolved.

Some say that absence makes the heart grow fonder. I put this cliche to the test this summer with an Alzheimer’s patient, a person who can forget in an instant, my mom. My family and I did a lot of traveling toward the end of the summer. We drove from Indiana to Colorado, back to Indiana, and then down south to Virginia, my old stomping grounds, then on to North Carolina, and finally back to Indiana. This travel encompassed a month when I was not home and not able to visit my mom.

There was a time when I felt so guilty if I couldn’t visit her once a week that it made me physically sick. Now I wasn’t going to be able to see her for a month. How would this affect her? How would it affect me? Mom is in the later stages of Alzheimer’s. Her brain functions are more affected by the disease than her body. She can outwalk the best of them, but ask what her name is and she can’t tell you. In fact, most questions are answered with pure nonsense. I was sure that I would return and she wouldn’t know me. I thought I would receive a blank stare or a confused look when I went to see her.

It was time for the big test. I was anxious. I prepared myself for the worst. Walking in, I mentioned my apprehensions to the nurses and they reassured me. They were sure that she would know me. I saw her sitting alone, and after a deep breath, I approached her during morning activity time.

Gently, I placed a hand on my mom, squatted down to look at her, smiled, and said, “Hi Mom, it’s me, Molly. I sure am glad to see you. I have missed you.” And her face lit up. There was that smile I knew. The joy in her face showed that she knew me and was happy to see me. I was so happy to see her and I had missed her so much, more than I can remember in a long time.

This experience reminds me that sometimes I need to heed my own advice. Recently, after talking to someone else who was struggling with being a caretaker, struggling with the continual loss of the mother she once knew, I gave her some advice. I said, “They will forget. It is part of the disease. They will forget things. Memories will be lost. They will forget their own names and the names of everyone they ever knew. But one thing they will never forget is what it feels like to be loved.”

Love is always the answer.

Saturday, July 26, 2014

Giver or Taker

There are givers and there are takers. Each of us is weighted toward being one or the other.

My parents are givers. I grew up seeing them open their, our, house to others - a place for strangers to stay if they needed a place, a meal on a holiday instead of spending it alone. My mom was a counselor and also ran breast cancer support groups, volunteered in our schools, and even helped people with bipolar disorder with their diagnoses and treatment.

My dad also made sure that people were taken care of. He touched many lives - making sure legal paperwork was in order, rewriting resumes, and gathering funds to help some elderly folks who needed help. He visited and checked in with those who needed it, those who didn’t have any one else to take care of them if it wasn’t for him.

My parents just did these things, with no pomp and circumstance added. Usually, no one had any idea how they had helped someone until years later. Growing up, this way of being was just how it was. Any other way of being or thinking was somewhat foreign to me. Why wouldn’t you volunteer your time or help someone?

My husband, Jason, has the same mentality. During the 15 years that we have been married, he has helped others in need. He has bought meals, toiletries, and even paid rent for folks who just needed a chance. He has volunteered on the boards of non-profits. And Jason has made sure that he found work for those who needed it. Jason once told me that he was looking to give a hand up, not a handout, believing that it was better to empower people, to teach them skills, and to have them work when they could. Even so, he made sure that these people were taken care of somehow. He got them what they needed.

I have continued down my parents’ path. I volunteer for agencies and help out at school. I do what I can to help who I can, again asking nothing in return.

Recently, I have been doing a lot of volunteering for the Alzheimer’s Association and participating in activities that make my children very aware of what I do. Most of the time my volunteering occurs while they are in school, so although they know in the back of their minds that I am giving back, they aren’t seeing it first hand.

A story published. A book signing. Those were pretty darn obvious. You can physically see and hold a book, and both kids came to my book signing. They saw the people filing in to buy the book and talk with me while I signed copies for them.

The Longest Day (a day set aside for raising funds to fight Alzheimer’s) was a little harder for the kids to understand. They saw it as getting to hang out with their Grandma, just as they always did, as we involved my mom in the fundraiser as much as we could. They knew it was to raise money, but they did not see the work that it takes to collect money for the cause, as that took place mostly online.

The Blondes vs Brunettes Flag Football game was a bit more obvious to them. I was gone twice a week for practices. I had plays to study. I had a news blip to participate in. And their dear old mom hurt her knee in practice. All of these things were leading up to the big game, which they were coming to see. Again, they knew I was raising money, as they heard me talking about who had given or how much more I needed, but again, most of the fundraising was online.

Even before the big game (which we, the Brunettes won), they wanted to do something to help. They wanted to raise money for the Alzheimer’s cause. They saw every day what that disease was doing to their Grandma. They knew her when she was normal, their loving, intelligent, beautiful Grandmother. And they have watched her regress through stages of Alzheimer’s to now when she no longer knows who they are. They have fed her, held her hand, and sung to her. My kids have seen me crying over her.

Having run some successful lemonade stands before, they approached me with an idea. They wanted to know if they could run a lemonade stand and donate the money they raised to the Alzheimer’s Association, but they had one concern. I had bought the supplies for their first lemonade stand, but I told them that they would be responsible for buying the lemonade, cups, and other supplies for any future lemonade enterprises. With almost no readily available funds, they asked if I could help. Smart kids. How could I say no?

They were overjoyed. We made a plan and headed to the store to buy supplies. We made a huge jug of lemonade, filled a cooler with ice, set out purple cups, and erected a tent to keep the fierce summer sun at bay. Signs were made and chairs were put out in case of a lull with no customers. The best part, though, was the picture they wanted on the table. A picture of them with their Grandma. I helped them make a small sign explaining to those who came by that 100% of the proceeds would be donated to the local chapter of the Alzheimer’s Association of Greater Indiana.

So, excited to start, they were ready to go at 9am. But we had to hold them off for a bit. Jason needed to mow the grass, pick up the table from the office for them to use, and we had to set up. Jacob and Reese could hardly stand it. They wanted to make some money!

Finally, 11 am rolled around, and clad in Mom’s purple Alzheimer’s shirts, they took their positions at the lemonade stand (with a little help from Mom). The first customer slowed, stopped, parked, and got out of the car before we were even completely set up. He walked up and told them, “This is really great what you are doing.” What a good start for the kids to hear that!

As with all lemonade stands, indeed for all retail businesses, customers came in waves, followed by periods of no customers. At one point, early on, Jacob said to me, “Mom, I hope we can get more than $10. I really want to be able to donate a lot of money.”

That had me thinking. How could I get more people here? I shushed the voice in my head telling me my idea was silly, and I emailed three of the four major local news teams, letting them know what my kids were doing. It was a brief email, but explained that any help would be appreciated. Not ten minutes later, I had a response from WISH-TV. They would be there in 30 minutes.

Jacob and Reese were so excited! Jason and I prepped them on the questions that they might be asked and to our surprise, they needed no help, no prompting. These two kids knew exactly why they were doing this.

The news van pulled up, and since there was a lull in customers, we knocked on our neighbors’ doors to ask if they would be customers for an interview with the news. Even though they already had supported the kids with a few cups of lemonade and a donation, they were there to help again, to support the kids and their cause.

The interviews went without a hitch and the kids made it onto the evening news. Even though that was certainly an exciting part of the process, it wasn’t what really mattered. Jacob and Reese wanted to find a way to help their Grandma. They also wanted to help other people who have been affected by the disease, just as they have been affected. Despite being only eight and 11, adults stopping by the lemonade stand told them stories about parents, relatives, and friends who also have had the disease. Their experiences illustrated that the disease has burdened many lives, and confirmed to the kids that what they were doing mattered not only to them, but to many other people.

Maybe you will take this as story about a proud parent, as I certainly am, but what I also want to convey is that your way of being matters. It matters not only to yourself and to your kids, but also to each person whom you encounter in your life.

Give more than you take because we need a lot more givers, and giving truly takes very little. Look to give a hand up and even a handout once in awhile. Don’t look for something in return. No one needs to know what you have done because, trust me, the person it affects will know. And just as importantly, you will know, and you will realize that when you give to others, you also give to yourself.

Put words into action. Make that phone call, give a hug, and go visit that loved one with Alzheimer’s. Yes, it is hard when a person you love does not know your name. But he or she sure can feel the love.

Click here for the link to the news story.

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.

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.

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.