Monday, December 23, 2013

Angels Among Us


Daily our lives are touched by people in many different ways. Sometimes these experiences happen but do not register with us in any sort of profound way. Lately, I have been reminded about certain individuals who stand out. There are many people who have made a difference in my life in many ways, but I am thinking of people who have helped me through one of the hardest things that I have had to deal with. They have helped me through the many ups and downs of dealing with my mom having Alzheimer's Disease. These people are my angels here on Earth.

Chinel - My mom knew Chinel before I did. Chinel has done my mom's hair for years so she has known Mom since before Alzheimer’s and through all the stages of Alzheimer's. Mom knew Chinel as a single woman and through a marriage and having her first child. Even when Mom couldn't drive herself, she insisted that it must be Chinel who did her hair. Mom always talked about how kind Chinel was and that she enjoyed her time while in her chair. She was angry and saddened when she thought some of Chinel’s fellow employees were being mean to Chinel and not treating her right. And even now, now that Mom doesn't know what is going on, we always return to see Chinel. Alzheimer's patients don't always do well with some of the things we take for granted, but sometimes they seem to know that they are in good hands. Just yesterday, for instance, it was obvious that Mom still knew, in her heart of hearts, that Chinel is a kind and loving person. Chinel is always so patient and sweet. She talked with Mom, even though what Mom says often makes no sense. Chinel listened to Mom as she talked in her own confused way about the pictures of Chinel’s daughter Trinity that she saw in Chinel’s workspace. She understands even when my mom is confused about the “Lady in the Mirror.” And we certainly have had many laughs over the years, as well as more than our share of sadness. Yesterday Chinel had a hug from Mom, and I know it meant the world to both of them. Chinel is about to have another daughter, due any day now. She will be off for at least six weeks, and we intend to wait for her return before Mom has another haircut. We will wait for our angel. She is our angel because I don’t think I could have continued to take my mom out as much as I have without knowing she had Chinel's chair to sit in and her company to share.

Liz F.- I met Liz in college, and through Facebook and because of a mutual hardship, we have reconnected. That hardship is Alzheimer's. Like my mother, her mother-in-law is suffering from this disease. And despite the miles between us, we know that we have each other's back. It doesn't matter what time of day, we both know that a text from the other means that we need a strong woman to help get through some crisis. Because our loved ones are at different stages, I have been able to offer much help and many suggestions. I can relay to her what I did in certain situations, hoping that maybe this would work for her MIL. And this is not a one-sided deal. This is not a relationship in which I am only helping her. No, we help each other. We understand what the other person is going through. We know the real pain that we have like no one else does. We have lived it and still live it each day. One day she told me that this fight can be so lonely. That some of her friends have abandoned her. They are tired of hearing her struggles, tired of wiping her tears. This broke my heart. I am lucky. People have stayed strong for me when I needed them. They have not left my side. And Liz, my Colorado angel, I will stand strong with you, listen to your struggles, wishing I was at your side to give you a hug and wipe those tears away. Count on me, my angel, you can count on me.

Stacie- Stacie started out as my workout buddy. We would labor through our CrossFit workouts, pushing each other to be better than we thought we could be. Always listening and offering advice, she helped me stay healthy and keep working out, even when I just wanted to put that bar down. She understands that this is what my body needs both physically and mentally. Now that workout partnership has turned into a close personal friendship. Stacie, I thank you for being a friend who has surprised me in so many good ways. I will not forget the offers to help with my mom, even though you have never met her. Offering help for when I was out of town and couldn't help her. You are a selfless friend and I thank you. Also, thank you for keeping it real and making me laugh. Your brutal honesty and one liners crack me up. We sweat away the toxins and the sweat angels remind us why we are there.

Morgan - My sister and Mom’s other daughter also has this struggle to get through. I understand that she is far away and not physically here all the time. She just can't be, but I know that I can pick up the phone and call her anytime. Despite her own pain with the situation, she listens. She helps dry my tears, even 12 hours away. She offers suggestions when I need them. We share laughs when a story strikes us as funny, and she stays strong for me even when she also is sad and it is hard for her to be strong. She is a caretaker, a friend, and the best sister I could ask for. My words seem simple for such a complex situation, but I can feel her love and her strength no matter the distance. My sister, my angel.

Jason and the kids - They have been with me through this entire struggle. They have known my mom through every stage. Jason offers whatever he can, depending on the situation. They have helped Mom when I was out of town, visited her with me, or given me hugs and kisses and let me cry, because sometimes that is exactly what I need to do, just cry. The kids have known their grandma through every stage. They continue to be excited to see her. They accept her for whoever she is on that day, at that moment. They dance with her, they tell her she is beautiful, and they share their treats with her. They visit her with me when I am not strong enough to do it on my own. And they all have shown true love, patience, and understanding not only with Mom, but with me. These angels I hold close to my heart.

Last and certainly not least, my Dad - Remember first, as you are reading this, that he edits every one
of my posts, so he is having to read this about himself as he edits. My Dad is one of the most selfless people I know. He was once married to Mom, they remained friendly after the marriage ended, and he has to continue to hear from his girls the heartbreak that her condition causes us. As a parent I know it is hard to hear that your children are suffering, but he also loved this lady, so he has his own feelings for her to deal with, too. Despite all this, he always has an open ear and heart. He listens to what Morgan and I tell him about Mom- all the pain, hurt, stress, and disappointments. And he hurts because we hurt. Just last week, after having a conversation with Morgan about how hard I was taking Mom's deterioration, he offered the ultimate sacrifice. He offered to move Mom to Virginia, where he lives. We could put her in a safe place there, and he said that he would watch out for her. He thought that having to shoulder the responsibility for my mother every day was too much for me. He worried that I was breaking, and he said that he would relieve me by taking on the responsibility for Mom. We declined the offer, but we will never forget it. Dad is certainly one of my biggest fans, but what he doesn't realize is that I am an even bigger one of his.

We must surround ourselves with those who can help lift us up when we cannot pick ourselves up. We are caretakers for others, but as we care for others, so do we need others to help take care of us. We all have our own angels. Find yours, keep them in your life, thank them, and love them. Blessed be the angels, for they are us.

Wednesday, December 18, 2013

Love's Spark


Part Two of Our Day of Giving

And so begins the rest of our adventure on that day of giving. We first had planned on just volunteering for the USO and the Snowball Express, but new plans surfaced along the way.

Jacob and I were done volunteering around lunch time. Time had flown, and we were both starving. We stopped off to get lunch and fuel our bodies for the next two stops. We both enjoyed having our lunch together, discussing the day so far. We talked about the little kids. They were so cute and they really enjoyed the bowling game. We talked about all the wonderful things they got to do, but we also discussed that many of these kids had lost fathers, and there was one Dad there with his two daughters who had lost their mother. My heart ached for these families, but I was glad that we could bring a little cheer to their day.

My mother-in-law, also known as Mimi, had mentioned in passing that she wasn't going to put up a tree this year and not much in the way of decorations. My guess was that the effort to do all this was a little too overwhelming for her. That is where Jacob and I came in. After lunch we headed to her house to “ungrinch” it. She was at work and had no idea that we were going to her house to take care of the decorations. In we went and down to the basement to search around for what we needed. She made it easy. She had five artificial trees and some of them were still decorated from last year. I knew that she liked to have trees in the main rooms that she uses, so we set out to place trees where she could see them. One that was already decorated went into her bedroom. Jacob commented on how pretty the glow from the lights was and that he was sure Mimi was going to love it! Onward.

Next we found three smaller trees of various sizes. They seemed to go together. The problem was that two were decorated and the large one was not. Jacob convinced me that this was ok and that if we grouped them together it would look like it was supposed to be like that. We decided to put these in the kitchen where she had just the little nook for them.

Last was the living room. We brought up the final tree, which was not decorated but did have lights pre-hung on it. We had to find decorations for it. She had tub after tub of decorations and I wasn't really sure which to grab. I found one tub with grapes and golden guitars and some silver and gold pine cones and other baubles. I decided I would use these. It was sure to look like a tree from the department store. Those decorations were fancy!

Jacob and I gathered around the tree and placed the decorations here and there. We surveyed our work, rearranged, checked again, and rearranged the decorations one final time. I remembered seeing a tree skirt and some other decorations that she had used in the past. I gathered them from the basement, and we talked about what to do with the things I had found. We decided to put the sleigh on the fireplace hearth. Jacob thought we should place the two reindeer, dressed in their holiday best, under the tree. We did just that and we were finished.

We again checked each tree and were so excited for Mimi to see what we had done. Jacob was full of joy and excitement for doing this small thing for Mimi, his paternal grandma. Then we were out the door and on to our last stop, to visit my mom, his maternal grandma.

We arrived at the locked down ward where she lives. Jacob had some M&Ms in his pocket in case we had to bribe her to hang out with us. Sounds strange, but you soon learn what works, at least sometimes, with an Alzheimer's patient. Grandma loves her treats! In we went, Jacob racing ahead to punch in the code, because kids love punching buttons, Santa hat bobbing along. In we went, and she was talking with another resident. We approached her and the nurse told her we had arrived. She was a bit confused at first, but we greeted her with hellos, hugs, kisses, and a few M&Ms, and she was soon on our side. We started our visit with walking around a bit, which she loves to do.

There was an old Cab Calloway movie on. It was belting out some great tunes and so Jacob decided to ask his Grandma to dance. They danced and she sang. They danced some more and then I cut in and danced a bit with Mom. She smiled, laughed, and sang some more. She was having a great time. After about 45 minutes, we had to get home in time to meet Reese, who would be off the bus soon. We explained to Mom that we would have to go and she gave us an, “Awwww,” just like a little kid would. Then she laughed and said, “I understand hon. It's ok.” We told her we would see her soon. She walked us to the door where we gave her more hugs, kisses, and told her we loved her.

We scooted out and Jacob and I held hands as we walked toward the car, skipping through the parking lot.

It was a day of giving and it felt so good, so right. Although Jacob still believes in Santa Claus (quite a feat at 10 years old), he felt the magic of what being Santa is all about, being a servant to others and enjoying it. Finding ways to give back, not because you have to, not because it has been asked for, but just because. And as good as we made all these people feel, he realized how good it feels to be the giver instead of the receiver.

One day I will have to explain about Santa. Not that he isn't real but, instead that he lives in all of us. His magic is about believing in things you cannot see or touch and things that cannot be measured. We must do this every day with our family, our friends, our beliefs. And what is this big entity that we must believe in? Simply put, it's love. My dad once wrote in a poem to my sister:

Santa will find you, at night in the dark,
For he's guided by love, and love's little spark,
Shines in the night as a guide and a beacon,
To lead him to you as soon as you're sleeping.
He watched you all year, your smiles and your laughing,
The way of your life, your giving and sharing.
Santa will find you, rest and sleep tight,
If love's spark will guide him, he'll see your bright light.

May you find another's bright light, just as we did that day.

Monday, December 16, 2013

My Son, The Giver


A DAY OF GIVING-Part One

When my son Jake was about eight, he started receiving a commission from us. Most people like to call money to kids an allowance, but in our household it is called a commission. You must work for your money. Each day the kids have tasks that must be completed and whether they get paid depends on whether the jobs are done. This keeps everyone accountable. Anyway, when we were introducing this concept to Jacob, we also talked about such concepts as tithing and giving back.

We explained that, as a person living in this world, we need to find ways to give back. We give back with our time and with our resources. We explained that one way to give back is to give money to an organization that needs the money, which combined with other contributions, allows the organization to give back to more people. Together we researched organizations in which an eight year old boy might be interested. We talked about giving to the zoo or another animal-loving organization. We talked with him about some local charities we were involved in, and finally one struck a chord with him - The Snowball Express. The Snowball Express helps children who have lost one or both of their parents who died while serving in the military. He wanted to make things better for these children. He donated his entire commission on the spot, and we matched his donation. It wasn't a big donation, but in his eyes it was everything.

I regularly volunteer with our local USO, and I heard that the USO again was going to be helping with The Snowball Express here in Indianapolis. I knew right then that I had to be involved, and I was hoping that Jacob could be too. When I told him that the two of us were going to volunteer and help with the Snowball Express, he gasped, ran over to me and hugged me. My ten-year-old little boy was that excited about volunteering. I knew my husband Jason and I had done our jobs well.

Then came the countdown. And it was, “I can't wait until next Thursday.” And it was, “I am so excited that you and Dad are letting me do this.” Ok, not only was this kid excited about helping others, but then I told him that he got to miss a day of school! His response, “Mom, that's cool and all, but I don't really care about that. I just can't wait to volunteer!” Jason and I definitely had done our job.

The big day arrived, Thursday, December 12, 2013, and he was out of bed, all dressed, and ready to leave with no urging from me. Off we went, Jacob wearing his Santa hat and full of pure excitement. On the way to the airport, he said, “Mom, you know what one of my hobbies is?” I was ready to hear a response like building legos or annoying his sister, all of which could have been legitimate answers. Instead he said, “Helping people.” I told him that his Dad and I also loved to help people and that we were very proud of what he was going to be doing that day.

We got to the USO, had our updates, and received our boarding passes to get through security. We headed to Gate B5, where American Airlines and the Indianapolis Airport had blocked off not only gate B5, but also gates B1 through B5. We walked around a corner to see balloons, a bouncy house, people in costumes, games, and food galore. The elves had been busy the night before setting up. We knew that this was going to be a wonderful day.

Before we entered into the pomp and circumstance of it all, I stopped and reminded Jacob why we were there. I reminded him that when he saw a child there, despite all the fun and celebration, he needed to remember that the child had lost a Mom or a Dad, or possibly both. My little boy with the old soul got it. He knew why we were there and still could not wait to help.

We were set to help with the CornHole game and were eagerly awaiting the first families to arrive. The entire area was charged with the energy of pure love. People were there because they wanted to be. They delighted to be there. People were dressed in costumes of Christmas trees, penguins, gift packages, and other seasonal motifs. Everyone donned elf hats, Santa hats, or reindeer antlers. There were Colts cheerleaders and even an Indy car driver. But, honestly, it didn't matter who you were, only that we were all there for the same reason. We were there to bring some joy into the lives of the children and their families.

All day, Jacob played CornHole with any kid who wanted to play. He played with some of the boys who were his age. He helped pass out bags of treats and to clean up at the end. Every minute of the day he was smiling and radiating joy and love. Jacob raised his hand when the group was asked who was a USO volunteer. He was so proud.

And so he missed a day of school. He got to eat a donut, play games, and have some fun. What he learned that day was so much more important than a day at school. Jacob knows the meaning of giving back. He knows that sometimes the little things we can do mean the world to others. Today he took home with him the knowledge that we should appreciate what we have because it can be taken from us at any time. Jacob learned that there are actual people, people with husbands and wives and children, who give their lives to keep us safe. And today he learned that even at ten-years-old, he can make a big difference in the world.


Thursday, November 21, 2013

Normality


Normality. This word can cause a safe feeling. It supports nothing strange or out of character, but instead, what is expected. Although this can be very different for each of us, it still makes us feel as if things are going as they should go or as planned. But when something happens outside the blanket of normality, it can be life changing.

This week my Uncle Tom came from New York for a short visit. He came to visit his sister, my mom. We have kept in touch and he reads my posts about her, so he had an idea of how she was doing, but through an outsider's perspective rather than through direct experience.

During his visit we really had only one day to visit Mom and get to spend some time with her. I was worried because you never know what kind of mood she will be in when you visit, and we had a one shot deal. A few days earlier, I went to visit her and she was agitated, yelling at the TV, and wouldn't talk to me. I tried and tried to approach her that day. I engaged and re-engaged her about seven different times, but to no avail. She was mad at the world, so I had to throw my hands up and retreat. I was hoping we wouldn't have that kind of day for Tom. I was worried, and I wanted things to be “ok” for him.

As luck would have it, we were blessed with what I would call a great day. We had a little bit of confusion when I first approached her, but after a little cajoling with some animal crackers, Mom perked up. I got her photo album out, and we all sat together to look through it. I had hoped that the pictures with Tom and my mom together as kids would perhaps create a spark in her memory. Alas, that flame may have been forever extinguished. She talked and responded, but she showed no recognition of what she was seeing. She rambled on incessantly as we looked through the photos. We looked at the pictures over and over and repeated ourselves, but our words made no impression on her. I felt Tom's pain as he wiped away his tears as he realized that his beloved sister was lost to him.

We decided to take her out to lunch, which she loves. Tom walked her to the car, the two of them arm in arm, smiling, talking. While driving there, Mom continued to talk and tell stories. I interrupted her to try again to help her recognize her brother. I said, “Mom, your brother Tom came to visit. He flew on a plane all the way from New York to visit you.” As Tom voiced his enthusiasm for being there, I could see that she was surprised to hear his voice. Where had it come from? She didn't realize that someone was in the back seat. She could only see me. She turned around and said jokingly, “Who is that man?!” Tom answered that he is her brother. Then she said something else that didn’t make sense, and followed up with, “Wow, there's a man back there. As the young ladies say, Woo woo!” And we laughed. We were able to take a painful situation and laugh about it because, honestly, it was funny.

On to lunch, where we all sat, talked, and did a lot of laughing. Because she has no filters, she would notice almost anyone who walked past and would comment on them. We had no worries about what she was saying though, unless the passerby could interpret what she meant by, “The guy with the boobidy boodley boos.” We were glad that we could find joy in a hard situation and yet sadness lingered. Tom held back the tears he could, and he wiped away those he couldn’t hide.

We followed lunch with a walk and more sitting and chatting, but finally it was time to go. Mom was tired. I wanted to make sure that Tom at least remembered his visit with his sister as a somewhat positive one. I didn't want him seeing her when she was tired and aggravated. That didn't need to be his new normal with her.

Throughout the day I realized that what my mom has become is now “normal” to me. The mood swings, the nonsensical talk, the confusion, and the lack of recognition of those who love her. All of this is also intertwined with her smiles, her love for dancing, the moments she calls me “hon,” or the times she actually has some clarity. All of this is my normal.

Although I was so very happy that Tom and I had such a good day with her, I know that this day was hard on him. This was not his normal. His normal was a sister who loved to take care of her baby brother. A sister who would be there for him whenever he needed her. He tried to prepare himself for what it would be like. Heck, I tried to prepare him for what the visit might be like, but you can never really be prepared for seeing someone you love be replaced by someone who is but a fragment of the person you once knew. An imposter.

We came into the day hoping for just a moment or two of clarity. There was no clarity, no spark of recognition, just a nice day spent with a nice man. As the day came to an end, we saw that the glimmer of hope for a little brother wanting his big sister to remember him was extinguished. And as he hugged her goodbye and told her he loved her, she hugged him and replied, “It was nice to meet you.”



Tuesday, November 5, 2013

My Calling


During the past 10 years, I have constantly doubted myself. This feeling comes from being just a mom. I wasn't bringing in household income on a consistent basis. Yes, I would do something here and there to bring in a little money, but it was never anything substantial.

As the years passed, the feeling that I “should” be doing something other than raising our two children and taking care of the house pulled at my heart strings. Then something magical happened. I let it all go.

Last week I pulled up one of the many videos that people post. This one hit home. This one registered in my heart and in my soul. A number of moms talked about what they viewed as their shortcomings in being mothers. Then they saw videos of their children talking about how their children viewed their mothers.

One of the mothers had expressed her feeling that she tended to focus on the negative, what she was doing wrong as a mom. This is so true for me. You may think that because I am not being assessed by someone in HR, that I don't evaluate my job performance. Wrong. I do it constantly. I reflect on situations and how I could have handled them better, worrying that because of my failure my child will be on Dr. Phil later in life. I constantly try to find a balance, not only for myself, but also for my children. I don't want their existence to be driving from one activity to another, although that sometimes does seem to happen.

As for the activities themselves, I constantly debate what they should be doing. Should it be lacrosse, dance, soccer, basketball, Boy Scouts, art, spanish, or some other club? I really don’t have the answer, and I really don't think that there is one. I just pick what they seem interested in and enjoy. And yes, I have had to quit some that my kids liked and enjoyed, for my own sanity. Boy Scouts got the proverbial boot this year, after I missed a gajillion emails and therefore we missed a gajillion meetings. My son liked it, but for some reason I could never seem to keep up with it. We are already balancing Brain Balance (a subject for a future blog entry or two) three times a week, Brazilian Jiujitsu twice a week, and basketball twice a week with the kids. Add any meetings that my husband and I have and we are a scheduling nightmare.

When there are too many activities, dinner can become an afterthought. I know some moms just drive up to the next fast food window they see, but I love to cook dinner. OK, let’s rephrase that to say, I enjoy cooking dinner when my family enjoys it. What I don't love is the face from my son if I serve zucchini or kale or by my daughter if I offer meat other than fish or London Broil.

Anyway, my point is that I love dinner time at our house. We actually all sit down together and talk. We all must say “What's the best thing that happened to you today?” because no matter how crappy your day, there is something good that happened. Then we all say, “I am awesome because (fill in the blank).” We are trying to teach our children to see new and unique things about themselves that are admirable. It is much easier to tell someone else why they rock, and sometimes harder for us to do this about ourselves. Just ask the grown-ups, many times our kids are calling out good stuff about my husband and me as we sit there not realizing our own true awesomeness.

Our own true awesomeness somehow gets lost in the shuffle of the day. If you watch the video that I was talking about, all of the mothers talk about what they needed to improve on as moms and all of the children talked about how amazing each one of their moms was and is. Since viewing this video, I have come to appreciate what I do every day for my family and my kids. I am raising our children to be personally strong. I am teaching them the responsibilityof being part of a family and eventually an adult.

Each day I am feeding their little bodies with healthful food so they learn about how to treat their bodies and that it does matter what you put in them. The other day, my daughter came in to our bedroom and said, “Momma, Daddy come here. Want to see me flex my muscles?! Look how strong I am!” She is strong in so many ways. And so is my son. The things that he has gone through, many kids would have given up by now, but not him. He continues on (mostly) smiling and continuing to conquer those things that he struggles with.

There is not a day that goes by that I don't tell them that I love them many times. I hug them and kiss them and reassure them when they need it because we all need it. And there are certainly times that I put them in their place when they try to take an attitude with me. I make them do chores. I make sure that they do their homework and help them with it as well. We break out in spontaneous dance parties because why not? It's fun! Sometimes we sing loudly in the car. Other times I have nothing on and simply listen to what they talk about.

I have learned that you can learn a lot by simply listening. Like that some of their top ten music artists are Bob Marley, Michael Martin Murphy, Lady Gaga, and ACDC (yes, there is a wide variety of music in their portfolios). I also learned what teachers they like and why. But sometimes I hear things that I could care less about, like some TV show that they like but I would rather stick forks in my eyes than watch. Even though I am not saying anything, I am taking it all in. I am there.

Being there means I get to be the first one to see their sleepy faces in the morning and hear about their
dreams. I get to watch my daughter as she waits for the bus. I give her our sign for “I love you” through the window and see her sing and dance on the driveway or kick stones until the bus pulls up. I get to be the one the school calls and go to the rescue because my little one has a fever and needs to come home. I am the one they see when they walk through the door after their schoolday. I get to hear about their days. I share the excitement of what they did at recess or wipe the tears after they have had a terrible day.

I am many things. I am a taxi driver, a cook, a maid, a teacher, and a counselor. I know now that all of this matters, truly matters. It matters more to me than a few dollars here and there (although, trust me, we could certainly use them). I can only hope that if my children were asked about their mom they would have positive things to say. And I know now that when someone asks me about my job as a mother, that I will not be embarrassed about it because it is my calling. It is one of many things that I was meant to do. And I do it so well. It means everything to me.


Wednesday, October 23, 2013

Everyday Battles


There was a trip planned to travel to Brown County with my mom. We were supposed to ride charter buses to Southern Indiana to see the changing of the leaves, have a picnic in the park, and do a little shopping in the town of Nashville, IN. This was all supposed to be done with my mom who has severe Alzheimer's.

I agreed to go on the trip thinking that this might be the last time I would be able to do something like this with her. I was envisioning us oooing and ahhing at the beauty of fall. I did not think that this was out of the question since last time I had been outdoors with Mom she was pointing out the flowers, the trees, and the natural beauty around her as if they had been created just for her. I had high hopes for something similar on our trip.

I should not have glamorized this trip in my head. I should have gone with the mantra that has worked so many times before: “No expectations. No disappointments.”

I woke up to a wet, drizzly day, but did not let the rain dampen my spirits, no pun intended. I simply took along my raincoat and a pair of rain boots in case I needed them. I went into this trip with a positive outlook.

When I arrived at the facility where she lives, I greeted her with my usual, “Hi Mom! It's Molly, your daughter.” She looked out of it and tired. It took her a little time to be ok with my presence. Once I said we were going on a trip, she perked up and was excited. We loaded ourselves and our gear on the bus and started our 90 minutes journey south.

The bus trip was uneventful. I had been smart enough to pack some snacks, so I fed her some apples as we talked. All was fine for most of the trip, but by the end of the 90 minutes she was showing signs of irritation.

We got off the bus and thus began a day of stress for both of us. She moved like a snail. One of the symptoms of Alzheimer's is losing depth perception, and the unfamiliar terrain was hard her for. I had her on my arm, and I constantly had to tell her when to step up and step down, or warn if the terrain was uneven. She even let out a few shrieks of terror, as she was sure she was about to tumble to the ground. All of this just to get her to the restroom and back.

I told myself that it was a choice to be stressed. I told myself to take a deep breath and to enjoy the moment.

The next hour we were at the picnic. An hour of me trying to explain to my mother how to sit on a picnic bench and trying to help her do it. Trying to feed her lunch. Letting her be when she screamed at me to “Give her two minutes!” out of nowhere.

Again the reminders. Take a deep breath. Smile. Enjoy your time with your mom.

But we were halfway through the trip and on the inside I was a mess. My chest was tight from the anxiety. I was on the verge of tears every 20 minutes or so. Outside I was playing the faithful daughter, the strong, supportive, loving daughter, but all I really wanted was for the day to be over.

On to Nashville to get Mom the ice cream that I had been promising her all day. For ice cream the child within her came out to play. She was so excited for that ice cream. When I went to order a cup of chocolate chip, she indicated that she couldn't get any because she didn't have any money. I reassured her that I would pay for it and her giddiness came back. She ate that ice cream as if she had never tasted something so heavenly before. I couldn't feed it to her fast enough. We laughed at her enjoyment, and I was glad that I could make her feel so happy.

Again the reminders. Look at the bright side. You can do this. She is having fun now. Savor it.

I had to be happy with her enjoyment and resist the disappointment that was brewing in my heart. You see, that ice cream shop had pictures all over it of me, my husband, and my former teammates. For two years in a row we had won an adventure race put on by the owners of the shop. Mom had no idea. She couldn't see or process the accomplishments of her little girl.

Push away the disappointment. Push away the stress. Smile. This is supposed to be fun.

On to a coffee shop to sit with my mom, another resident, and a staff member. There was no shopping to do. No trinkets to buy. No christmas ornament that she had to buy for her grandkids. She no longer knows she has grandkids. Instead there was hot chocolate and a warm place to sit on a drizzly day.

People stared as if they didn’t understand what could be wrong with her. She doesn't look like she should need help. They don't see the vacancy of her stare. They don't understand that she doesn't know how to pick up her mug.

Just stay in your caretaker role. The staff experiences this every day. Don't think of her as your mom. This is what I tried to tell myself, albeit without success.

We went back to meet the bus. There was a delay in leaving as not everyone was on the correct bus. Mom fell asleep and I thought, “Thank goodness. She must be exhausted.” I understood how hard her mind and body had to work all day to get through the trip. All was peaceful until she woke up and we were still sitting there on the bus.

She was confused and disoriented and wanted to get off of the bus NOW. She stood up and grabbed at the seat in front of her, startling the lady sitting in it. She was angry and wanted to get off the bus. I did everything in my power to calmly explain that she must stay on the bus and that we would be leaving soon. She said she didn’t have to stay on the bus and then grabbed at the window trying to get out. She was angry and panicked and insisted on leaving. I stayed calm and tried to get her to sit down. I honestly don't have any idea what I said or did to finally get her to sit down and calm down. One minute she was happy, the next in a rage. Despite a staff member leaning over and whispering, “Good job,” I was a mess inside.

You are almost home. Deep breaths. Smile. Find your inner peace.

On the way back to Indianapolis we had broken conversations. Despite the anxiety I was feeling, I managed to look at her and study her face. I took her hand, felt her soft skin, and appreciated her beauty. It calmed her down. It helped calm me down.

I admit that I went into the trip with higher expectations than I should have. I knew better than that. I had hoped for a fun trip with smiles and pictures in front of trees with leaves afire with color, but instead endured a day of stress and anxiety. It was a day that didn't end with the trip, but bled into the next three days. The experiences of that trip were hard to process and to let go. Despite all my experience with my mother’s disease, despite living the nightmare, I still wanted the fairytale of having my mother be as she was before Alzheimer’s.

In Robert Lewis Stevenson’s novel, Dr. Jekyll and Mr. Hyde, the main character says: "I was slowly losing hold of my original and better self, and becoming slowly incorporated with my second and worse." My mother already has lost this battle; almost all traces of her rational, “good” self have been subsumed by her irrational diseased self. There are fewer days when she knows who I am. There will be fewer adventures outside the confines of her locked down ward.

Now I, too, must keep working to accept the new self that I call Mom. As with Mom, dueling forces battle within me. My irrational self wants her mother back, while the rational one realizes that this can never happen. It is easy to “know” this, and it is possible to say it and even to write it down, but, so far, it is impossible to accept it completely in my heart of hearts.

My mom’s original self, the woman without Alzheimer's, slips further away hour by hour. Although I fight my own battle of emotions to accept this and some days I don’t think I can, I know that I am supported by an army of warriors at my back. They will help me in my struggle to make peace with myself. And with their help, I will make sure that my mom, even if she doesn't remember me, at least knows there is someone with her who is her ally, her companion, her protector. My mother will not go into the darkness by herself. I will be with her on her bleak journey.


Tuesday, September 10, 2013

I Am Worthy Of Awesomeness


So after my Precious Papa read this and edited this post for me, he sent me this message in an email:

Sweetie,

You are much superior to that overused word “awesome.” 

You are one of a kind. A non pareil.  A lotus blossom among frogs.  You are strength to the weak and compassion to the sorrowful.  You are a Jeepful of fun.  A Super Buggy full of bubble gum.  You are My Girl.  You are snow at Christmas.  You are a perfect game by my baseball team.  You are perfect to me.

I love you.

Dad

And all is right in my world. I love you Dad.



My life isn't all Alzheimer's disease...thank goodness. Lately I have had some experiences that have scattered my emotions all over the place. First, I have started new programming for CrossFit. For years I had been really good at making sure that I was programming exercises that I didn't like or wasn't good at just as much as the movements that I was good at or liked. Then I stopped. Not only that but I wasn't truly programming for myself. Instead, I was picking and choosing from other gyms or making something up. In the end, this didn't give the results I wanted.

I also have a shoulder/bicep issue that has been keeping me from going full bore on a lot of movements that I normally would be able to do quickly. Now, I cannot do some movements without scaling or I am very slow. This also has been a mental test for me. I was accustomed to doing all workouts as prescribed, or “RX,” meaning that I didn't have to make the weight lighter or add a band to assist with a movement like dips.

Now someone is actually programming for me again and I love it. The new programming has me lifting and doing multiple workouts a day. Some may think this is crazy, but fortunately I have been fine. There have been days that I was exhausted, but with enough food to fuel my body and enough rest to recover, I have managed. This new programming also has made me take a step back and reconsider. I felt that I was allowing myself to be mediocre and that was not okay with me. I wanted to regain my physical strength, and I wanted to build more mental and personal strength. It was time to reevaluate all aspects of my life.

I always have had certain negative conversations with myself. These conversations told me and sometimes still tell me that I must be the best because that is what people expect of me. That I must be the first one done with a workout/across the line/with the most reps because that is who I am. If I fail at this, there is something wrong with me. So I was not satisfied with just getting the workout done. I don't jog, I must run. There is a constant reel of “musts” and “warnings” going on in my head about how I might fail or who might know how badly I did on a workout or that I wasn't able to lift as much today as I did with the same lift last week. All of these conversations are made up by me, I know that, but it doesn't quiet them. They persist.

Over the years, as I have worked out by myself, suffered a debilitating illness for eight months, and grown older, these conversations weren't changing, but my body was. The intensity wasn't there the way it once was. I had to get myself healthy again, and I knew that getting healthy had to include my mind and soul as well as my body.

Don't get me wrong, I know that I am strong in many ways. I can lift heavier weight than a lot of people I know. I can push through a workout and get it done, no matter that my mind is telling me to stop. I am also mentally strong when it comes to most aspects of my life. I deal with my mother's Alzheimer's disease on a daily basis. I have a family and home to take care of (trust me, the whole stay-at-home mom thing is harder than it sounds). But accepting my own self-worthiness is something with which I have always struggled.

I have said it before: I have always believed that I was/am never good enough. The biggest things that contribute to this now are not financially contributing to my family’s budget, our house not being how I want it, trying to get all my family’s activities perfectly balanced and scheduled, and my “workout things” (my body, my workouts etc.) not being how I want them. I could go on and on with a list...but I won't. I preach to my children that there is no such thing as perfect, yet I sit here and struggle with the same thing- achieving some unrealistic version or sense of perfection.

So, with this new programming I have had to step back, and I realize that I cannot do it all exactly how I want to do it or think that I should do it. I have had to scale weight and make myself deal with it. Admittedly, I cringed at first. I literally had an anxious feeling in my stomach because of scaling weight or movements. I had to keep myself from crying in a workout about two weeks ago. I was tired and slow that day and felt awful. I have had to push away the conversations that someone else was doing this workout in half the time because, guess what, of course someone was able to do that - and that is okay. There ALWAYS is someone who can do things better, faster, differently than I can. Always. But I was still doing it, giving it my all and I had the clothes drenched in sweat to prove it. I was doing this for me and it was working.

I no longer had anxiety over the food that I was eating. I was eating more healthfully just because I wanted to. It made me feel better and perform better. I have started seeing true improvements, not only in my times but also in my body composition as well. This success with my health bleeds over into my other world- the one that involves kids, housework, activities, and all the other goings on in my life.

Yesterday I posted a poster on my Abundantly Awesome facebook page that someone had posted on a pole in a town. It is a picture of a dog and it describes the dog, his name, and some personality traits. At the end you read that the dog isn't lost, just that the owner wanted to share how awesome his dog is. I posted it with a status that said to tell someone else that he or she is awesome. Because we all want to hear how wonderful we are, right?

Not much later I got a text from a friend that said “You're awesome! XOXO.” My response was “Ummm...thanks. So are you.” I thought she had meant to send it to her mom or husband and I had gotten it by accident. I had totally forgotten about my post and wasn't expecting to get a personal response from it. I eventually figured out that she sent it to me after seeing my post, but I was so resistant to hearing the compliment that I shrugged it off as a mistake.

What is wrong with me? Have I been beating myself up so much that I can't imagine that anyone would actually compliment me? That is just pathetic. It is time for me to accept who I am at any given moment and be okay with me. Heck, not just ok, but to think that I every little part of me is awesome.

I am that girl who makes stupid voices when I talk about certain things. I am sometimes brutally honest. I have stretch marks on my legs from growing muscles during puberty faster than my skin was ready for. I still cannot snatch 95 pounds, but I can overhead squat 190 pounds. (Makes no sense, I know). I cry all the time at songs, commercials, or because of the love in my heart for my kids and husband. My immediate family has no drama and I love them for that. I wish I lived closer to my dad and sister. I cuss sometimes and sometimes it makes me cringe and sometimes it makes me feel badass. I have awesome friends all across the country and right here in Indiana. I truly miss Colorado. All of these things and so much more make me awesome.

Finally my mind and soul are catching up to the healing and strengthening of my body. I always talked about how I can't stand how others bully. Well, I have been bullying myself for decades and it is exhausting. If it is not ok for someone else, it is not ok for me. I need to change the kind of conversations I have with myself.

Lately, things are changing. I have had deep belly laughs. I have eaten pizza and drunk wine and loved it with no feelings of guilt. I have danced in the middle of a store with my daughter because we both loved the song. I ran a 5k with my son and didn't care that he needed to walk once in a while. I truly accepted the compliment from the old gentleman in Walmart yesterday.

Maybe if I chill out a bit, accept and love myself for my individuality, strength, beauty, and ability to do the worm, I will enjoy life a little more and be able to pay it forward. Because we are all awesome.

Friday, August 30, 2013

One Love


When we are born, we need to be loved and nurtured. We instinctively trust those who care for us, feed us, and keep us safe. If we are lucky, we have parents who do just that, and it is done out of unconditional love. They love us for us. Nothing more, nothing less. We do not come out of the womb caring what color someone’s skin is. We are not worried about what brand of jeans our parents wear or what type of car they drive. We learn what love is through our experience of being loved.

As we grow we are taught about sacrifice. We are taught about compassion. There are lessons on patience and kindness. These lessons continue throughout our childhood. But when are we taught to dislike something that is different or someone who is not like us? When are we told that what we do not experience or understand is something that is bad and wrong?

For some there is an easy answer. They may have had personal experiences that they remember and that pinpoint the time when they understood that certain people cannot be trusted. Perhaps a family member or a friend taught them that some people are not as good as others. But sometimes it is not so straightforward. Maybe it was the simple act of your parents locking the car when driving through a certain neighborhood that somehow registered in your brain and made you think that the people who lived there were dangerous and were to be feared.

While I was in the Alzheimer’s unit visiting my mother, I looked around at the diversity of people who live there. All of them were well cared for, no matter what their state or what stage of disease they were in. The women’s skin, all of them make-up free, was a pallete of different colors and shades. Their skin showed wrinkles and spots, but each of the women was beautiful just as she was.

The people were in all types of clothes, no brand names anywhere. Men wore their best pajama bottoms paired with their best polo shirts . People were sleeping, mumbling, yelling, singing, and rocking baby dolls. The nurses were busy helping people to the bathroom, getting them ready for lunch, and making sure they weren’t getting out of their wheelchairs. Some may see this as cacophony. That day I saw it as a symphony.

I was hit with the notion that again, in this stage of their lives, what they need is the same type of love that we needed as newborns, as infants. They needed help getting dressed, in using the bathroom, and bathing. They needed someone to help keep them safe. They needed help eating. They also needed compassion, tenderness, and connection. They were almost back to square one. Yet, as I sat there looking around, I didn’t see shortfalls in care and compassion, what I saw was love. The nurses, staff, and family members were giving exactly what was wanted and needed.

As the effects of Alzheimer’s disease become more severe, the victims tend to lose their filters. This means that sometimes a person will say or do things that don’t seem to go along with the personality of the person you once knew. They may curse although they rarely did before. They may push or yell when they don’t get what they want. But as these filters disappear, so do the prejudices, judgments, falsities, and hatred that we have learned throughout our lives.

None of these people care about the pigment of another’s skin. They do not care if you are carrying a Louis Vuitton purse or are wearing lululemon yoga pants. They do not care if you are gay or straight. Tall, short, fat or skinny means nothing. Do you go to church? They don’t know. They don’t care. Their determination of whether you are a good person comes down to a few simple facts. It comes down to how you treat them when you are with them, how they experience you as a human being. Do you greet them? Do you smile and take the time to talk with them and maybe give them a pat on the arm or a hug. Really, it comes down to whether you are acting out of love, plain and simple.

All the b.s. that we learn and seem to find important in our everyday lives means nothing to them. Things, material things, are obsolete. Someone who treats them with respect and values them as human beings is who matters. People of all colors, shapes and sizes are friends. They sit together and talk. They dance and sing together. They don’t see the colors or the fat or the age marks or care about the nonsensical things you say. In the locked down Alzheimer’s ward there is little judgment. Instead the people there see and experience love. Because everyone deserves to love and be loved. Everyone.

Tuesday, August 20, 2013

The Sun On My Face


Sometimes we have days that make us stop and realize that we need to enjoy the simple things in life, to let go of petty things - the grudges we have, the bills that need to be paid, the person that cut in front of you at Starbucks. Days like the one I had today remind me of some of the blessings that surround me that I too often take for granted.

Today I was taking my mom to get a haircut and to lunch. I never know how that might go, but today she was in a good mood when I picked her up. She was excited that I was taking her out. I was feeling it. It was bound to be a great day with her.

While driving to the salon, I realized just how important it is to get her out of the facility. Things that we do every day of our lives become a special outing for my mom.

I was right. It was a good day. As we drove to get her hair cut, I let her talk about whatever she wanted. Rambling away about babies, and googly wooglies, and people and things I knew nothing of. She asked me questions, and I answered as best I knew how. One time she asked, “How are your brother and sister?” Well, I have a sister, but not a brother. At first I tried to figure out whom she was talking about. When she asked me the same question again, I just answered, "they are great! Keeping themselves busy!”

I never figured out whom she was talking about, but it didn’t really matter. I gave her the answer she needed to hear, the conversation that she needed. I think she just wanted to connect with me and talk and although most of what she said were bits and parts of thoughts and words, which together made little sense, I made sure I answered her in some respect. I wanted her to feel as if she was able to have a “real” conversation, that I was truly interested in her and what she was saying.

We had music on in the car. It wasn’t someone that she had ever heard, but she enjoyed the music anyway.  She hummed along to the tunes. She really loved two of the songs and we played them over and over. They were 3,000 Miles and One Day, sung by Emblem3. I always try to play her something that she might recognize, but today made me realize that that no longer mattered. If she liked it, she liked it, whether it was jazz singer Chris Connor or a new band on the scene, Emblem3.  We sang along together, just enjoying our time. She connected with the music and through the music we made a connection.

At one point she had a true moment of clarity. This hasn’t happened in a long time. When we were about to get some lunch, she said to me, “I am so glad that you can come and spend some time with me. It is good to get out. I am really having a wonderful time.” I had to swallow back the tears of joy. I responded by telling her that I was having a wonderful time and loved spending time with her. But alas, our moment was gone. She suddenly said, “What are we doing now? Where are we?” I simply explained that we were getting lunch and she was happy about that.

After having lunch and her telling me how good the chicken was, “probably the best she had ever had,” we headed home. Again she was humming along to the same music while eating a warm chocolate chip cookie. Her hands were smeared with the melted chips and she licked her fingers like we used to do as kids. Pure joy is what I saw in her. The kind of joy that only comes when you are truly in the moment and not caring what anybody thinks. Then she was pointing out the trees and the flowers that she was seeing. Again making me truly see those things that we take for granted, that we pass by every day, but rarely take the time to absorb their greatness, their simple beauty.

As we got out of the car to walk across the parking lot, she stopped, looked up and closed her eyes, letting the sunshine warm her face. She told me that it felt good to be in the sun. And she is right, it does. How easily we forget.

Take a lesson from my mom- stop and let the sunshine warm your face, breath in the fresh air, truly enjoy that cookie, find the wonderment in the simple beauty of nature, and sing along to the music and act like you know the words, even if you don’t. Enjoy the moment.

Friday, July 19, 2013

Connection


These days technology can get in the way. People’s faces are hidden, buried in phones texting, emailing, or checking some sort of social media. People say that texting has replaced talking. We worry that people now have acquaintances rather than friends because we aren’t connecting as individuals anymore. And it is true; technology –smart phones, computers, apple TV, DVRs, and even navigation systems – demand that we pay attention to them rather than to other people. But can technology also be a positive thing?  Can it help us connect with others rather than separating us? 

As I sit here in a cafĂ© writing this entry, I can say that technology has been a blessing for my family since my mom developed Alzheimer’s.  My extended family is spread throughout the country.  I live in Indiana with my husband and children, my mom’s brothers live in New York and New Mexico, my sister is in North Carolina, and my dad is in Virginia.  We communicate constantly with email, texting, and other electronic means.  We couldn’t communicate instantly when we needed to, or wanted to, without today’s technologies. 

Personally, I also have been able to connect with others through the blog entries I write. They are posted for the world to see and read. Writing is a type of therapy for me. It is cathartic. My entries help me process the emotions I am feeling and the problems I encounter while being a caretaker. I know my writing has touched others and helped others, as well. The feedback has been overwhelming. Even if someone isn’t in exactly the same situation, he or she can get a glimpse of not only what it is like for me, but also for others who are taking care of a loved one with Alzheimer’s.

Smart phones have been a blessing for my family. I send photos to family members so they can see what mom is up to.  It may just be her sitting somewhere smiling, but it also could be her sporting a pretty hat while playing dress up with my kids.

I have sent videos of my mom dancing, something that she rarely did when my sister and I were growing up, but she can’t get enough of it now. If the music is on, she is either trying to sing to it or dancing to it or both! I also have sent videos of her talking, just so my sister and mom’s brothers can hear her voice. Sometimes that is just what they need, just to hear her voice again, and though what she says may not make sense, it doesn’t matter. The sound of her voice is music to us.

We have tried to use Facetime to connect as well.  I Facetimed with my sister on her birthday last year. I was asking my mom to say hello to her daughter and I said, “Say hi, Mom!” Her sweet, happy response was, “Hi, Mom!” It made my sister’s day just to see her face, hear her voice, and have her say “I love you.”  So much happiness, so many tears, all at the same time.

I have connected not only with family but also with strangers. Because I have been very open and honest with my situation and feelings, I have had countless messages from people through Facebook asking for help and advice on how to handle situations with family members who are suffering from Alzheimer’s. They don’t know what to do and are desperate for help. They have turned to me, and I have shared my opinions or told my story or redirected them to an organization like their local chapter of the Alzheimer’s Association.

Recently I reconnected with a friend from college. Unfortunately, she also is dealing with being a caretaker for a loved one with Alzheimer’s. At first we reconnected through Facebook but now we also are texting. Unless you have been or are a caretaker, you never truly understand what it is like- the agony, the heart break, stress and desperation you feel and the grieving that you go through, not to mention the patience that you must have - what a lesson in patience!

Through texting, we are able to immediately connect with each other. Sure, we could pick up the phone and talk, but sometimes texting is a better option.  The other day she and her husband were in the hospital trying to get her mother-in-law to take some medical tests that had to be done. In typical Alzheimer’s fashion, her mother-in-law was refusing to have them done. She was explaining to them that she was fine and wasn’t sure why she was there. (Sound familiar to anyone out there? I know it did to me.) They didn’t know what to do. They needed someone to help them, someone who had gone through the same things. That person was me.

Knowing someone who is going through what you are facing is a blessing. It helps take a little of the weight off your shoulders, if only for the moment. The few words that I offered helped. I simply said that there was no reasoning with a patient who has Alzheimer’s. They might as well wait and try again tomorrow. Fighting with and trying to force her mother-in-law was not going to work. She would simply continue to fight them. Take a deep breath, relax and let it go, I advised. Tomorrow is a new day.

These few sentences were all my friend needed. She knew that I had been through what they were going through. Often the answers, the reality, that make sense to us in our rational world, make no sense to the person with Alzheimer’s. They are at the mercy of the ever changing world created within their minds, a world with its own reality. If the rules of their reality demand that they refuse help, and if you can let it go and take care of it later, then do that. Sometimes it is only a matter of minutes before the person with Alzheimer’s has a new reality, one that allows cooperation. Other times it may take hours, sometimes a day. Remember the patience requirement?  Be patient, try again when your loved one is ready.

To all of you out there trying to get through the day, through the seemingly impossible situation you have to deal with, remember that this too shall pass. Remember, too, that this is the ultimate test of love and patience. You can do it. And remember that there are others out there going through the same things. You are not alone. Use your resources to find those other people. Call the Alzheimer’s Association. Surf the web and find a chat room or blog that you can follow. Text a friend or family member. We are out here waiting to offer a helpful word, a hug, a text.  Find us and connect.