Tuesday, November 17, 2015

The Light Switch

I cannot figure out this disease.  Alzheimer’s keeps me guessing.  Just when I think that all I will hear from my mom is about two words, and that she has lost so much weight that we may be near the end, things change. Now she won’t stop talking. Granted, you cannot understand everything she is saying, but she is actually able to communicate, and we can understand a lot of what she is saying.

A few weeks ago I was at the point again where I was dreading the visits. My 12-year-old son had unexpectantly lost his best friend and the condition that my mom was in had me worried that I was going to lose her next.  I wasn’t ready to deal with another death. I knew that if I did lose her then, I would be in a very bad place.

As I always do, I made myself go visit. I knew that if I didn’t, I would regret it. I went in for our regular visit, and I couldn’t believe what I saw. She was a new woman. Do I mean she was completely lucid and we had in depth conversations? Of course not, but we did have conversations. I could ask her questions and she would do her best to answer them. Sometimes she would say the wrong word, but it was close enough so that I knew what she was saying. Sometimes she stuttered the word or answer over and over. But she answered me. It was as if, all this time, she had been stuck in a dark room searching for the switch that needed to be turned on and finally she found it. The room is not lighted as brightly as it used to be, but the light is enough for us to find each other.

Despite what others tried to tell me, I always knew that she still knew me. Even through the darkness, the silence, she knew me. Mom always smiled differently when I came in. Though she might say only two words, she made her best attempt to communicate her feelings by forcing out those words. And she would, randomly, say a sentence to me. It was like a flash of lightning on a pitch-black night. Things were still connecting.

And now, each time I visit her, she talks with me, answers questions. She tries to sing along with songs I play her. And she gives indications that, at times, she knows exactly what is going on.

I recently went on a trip that a friend planned. The trip dates happened to fall during her birthday. Every other year I had celebrated on her birthday, brought her gifts and treats, but I never felt like she knew what was going on. I figured celebrating her birthday this year a few days after it would not really matter. Did she even know what a birthday was? Just before I was leaving for the trip, I visited her. She was getting her hair done, and I was explaining to her the situation about not being there for her birthday.  Mom sulked and said, “I am going to be so lonely.” At first I did not understand exactly what she had said, but then Chinel, who was doing her hair, confirmed it. She understood. Our mouths dropped open. I explained that I would celebrate her birthday after I got back and promised to bring her treats and something fancy. That was enough to perk her up.

After her hair appointment, Chinel was telling her goodbye, gave her a hug and kiss, and told her she loved her and would see her soon. After their goodbye, as I turned her wheelchair, she tried to turn her head and yelled, “Hey! Thanks for coming.” I let Chinel know what she said and we both broke into tears.

I know this gift of her communication and understanding could be fleeting, but I am so very grateful. Grateful that she still knows me and is excited when I come to see her. I am excited that I still have a chance to interact with her with some level of real understanding and that she knows how much I love her. And even when that switch can no longer be turned on, when that light flickers out, I will be grateful for the times that I saw the light shine.

Thursday, September 24, 2015

In Memory...

On September 12, 2015, my son, Jacob, lost his best friend, DJ. He was only 12 years old. His death was sudden, unexpected. At one point I was asking, “Why DJ? Why this family? Why my son?” We don’t have answers yet to explain why this physically happened, why his body couldn’t hold on, and we may never get this answer. Although this information might help bring some closure, some answers about what was going on in DJ’s body, that reason won’t help ease the grief and sadness we all feel, or fill the huge hole we now have without him in our lives.

DJ was my son’s best friend, our neighbor, our friend. Although he was small in stature, he was larger than life.  DJ was kind, loyal, smart, charismatic, and a ton of fun to be around.

DJ and Jacob met in first grade. They sat right next to each other in class, not knowing they were neighbors. They didn’t ride the same bus because DJ went to before and after school care and somehow they never saw each other outside. We can thank the snowstorm of 2010 for causing the two of them to discover that they had a friend just next door.

Once they realized that they lived next door to each other, they became fast friends. Over the years there have been sleepovers, bike riding, Boy Scouts, parties, annual trips to the State Fair together, dinners out, movies, lots of video games and Legos, trick or treating together on Halloween, and even a few arguments. Having a disagreement once in a while is normal for friends, but Jacob and DJ were more than friends. These two were more like brothers.

I remember one time when Jacob and DJ were fighting over something, Jacob came home from DJ’s house frustrated, but not five minutes later, DJ was peeking in and knocking at our back door. When I asked if they were over whatever they were arguing about, DJ said, “Yeah. Sometimes we get mad, but that’s normal. We are like brothers. Brothers fight sometimes.” I can still hear DJ ‘s voice in my head. He pronounced brothers more like “brovers” and despite the spin DJ gave the word, he was right. His words of wisdom rang true about those two. They were like brothers and always will be.

DJ was an authentic human being. He was always himself. Other kids his age are worried about impressing others. They have to have the newest Under Armour hoodie or the cool socks. DJ could have cared less about those things. He rocked his sweatpants, often a little too short for him, and wore his character t-shirts like a boss. He wasn’t looking to impress anyone; he was wearing what he liked, what was comfortable, and what made him feel good.

DJ usually wore some sort of Velcro tennis shoes. At first, when he was younger, it was because he didn’t know how to tie his shoes, but even when DJ learned to tie his shoes, he still wore those Velcro shoes. When we asked him about that he said, “Why would I want to waste time tying my shoes? I have better things to do with my time.” Touché.

All of that extra time he gained from not tying his shoes did not go to homework or cleaning his room. I can’t tell you how many times Jacob would tell me that DJ was grounded because he didn’t clean his room or didn’t turn his homework in, even though he had done it. Then there was the time that he wasn’t doing so well in Spelling. DJ was smart, really smart, but early on he decided what he thought was important and what wasn’t. Tying your shoes wasn’t important and neither was learning the correct way to spell words. When he was released from being grounded, I would give him a mom spiel about doing his homework or studying his spelling words, but DJ scoffed at my advice.  He said, “It’s annoying. That’s what spell check is for!”

And it’s true that DJ did know what was important to him, and being friends with Jacob was very important. DJ was a loyal friend to Jacob. If those two were apart for longer than they liked, they would see each other, huge smiles on their faces, yell each other’s names and hug. They didn’t care who was around. They didn’t care what social stigmas told them. They were just so happy to be back together. Best friends, brothers united.

Jacob and DJ sometimes seemed young for their age to others, but they didn’t care, because they sure knew how to have fun together.  At 12 years old, they were still playing Legos together, having Nerf wars, playing video games, and battling whatever army and creatures their imaginations could come up with. I would see them outside, play swords swinging, taking down their enemies. Then they would come back in searching for bow staffs and other weapons they could add to their arsenal and head back out again to finally slay the dragon, win the war, save humanity. But don’t get me wrong; they were 12-year-old boys and there was talk, once in a while, about girls.

I would sometimes ask DJ, “Who is your girlfriend?” or “Any cute girls in your class?” mainly just to get a rise out of him. Most times he would get embarrassed, shake his head, cover his face, and do his DJ yell. But one time I asked him the same question and Jacob said, “Yes! Yes! Tell her DJ. There is a girl he likes and she likes him too!” This girl will remain nameless, but I am sure that DJ captivated her with his charm, just as he did us.

Despite being only 12 years old, DJ was wise beyond his years. He had impeccable manners. He addressed me and my husband as Mr. and Mrs. Godby and rarely ever missed a “please” and “thank you.” Good parenting there.  But one of my favorite things about DJ was his quick wit. He was that guy who could come right back at you with a witty response. You know those things that you wished you had thought of saying at the time that would have been so funny? Well, DJ didn’t miss a beat, slaying us with a perfect quip with perfect timing. There wasn’t a time that DJ was around that he wouldn’t make us laugh. Whether it was his perfectly timed comments, randomly busting a move in our kitchen, or treating us to a DJism, DJ just being DJ brought laughter and joy to our home.

We are all going to miss that guy. I will miss seeing him walk around our house wearing only one sock, not knowing or caring where the other one was. I’ll miss turning around while watching a TV show, only to see DJ standing there entranced with whatever was on, Nerf gun dangling in his hand.  No more DJ leaving his food out so he could go back to take a bite of it whenever he wanted, because he ate like a mouse. No more waiting up for Jacob on Friday night because he had gone to El Rodeo for a late night dinner with DJ’s family. I will miss having DJ show up at our door wanting to play with Jacob or watching Jacob run across the lawn to go play with his buddy.  DJ won’t be showing up at our house early on Halloween to go trick or treating before I can even get the kids in their costumes. I will miss checking in on the boys while they are sleeping, quietly dreaming the night away. And I will no longer get to hear about their plans for the future; Halloween costumes, trips they would be taking, jobs they thought would be cool to have, and their dreams of going to the same college and being roommates.

DJ and Jacob understood each other. They took each other for who they were- faults, idiosyncrasies, dreams, fears, uncombed hair- all of it. Those two understood that these parts made up the whole of who they were as individuals and they loved each other just as they were.

Losing DJ is beyond sad, it is devastating for us all. It just doesn’t seem right. Why should this family lose their son so soon? Why does Jacob have to lose his best friend at only 12 years old? What has the world lost? The world, our world, was a better place with him in it. Why take him away? There are no good answers to these questions.  And there is no changing the outcome. We simply have to accept these new lives that have been forced on us – lives without DJ.

Jason and I have told Jacob how lucky he is to have had a friend like DJ. We told him that some people search their entire lives to have a relationship like Jacob had with DJ and they never find it.  Jacob is lucky, we all are lucky, to have known DJ.

And so, although his wings were ready, our hearts were not. We will treasure the time we had with DJ and we will continue to remember and cherish our memories with him. And although Jacob lost his best friend, his brother, he knew what it was like to have a true friend, loyal to the end.  Godspeed DJ, our son, brother, and friend, watch over us. We love you.

In memory of David James "DJ" Preece ~ April 11, 2003- September 12, 2015

Monday, August 17, 2015

Hard Times

For Jackie Donaldson & Brooke Tetrault
In memory of Ruth Anne Trubitt 

Sometimes in life it is hard to do certain things. Lately it has been a struggle for me to write about my mom, partly because there has not been a lot to say, but the main reason is that writing would force me to confront my feelings.  If I don’t write about her I can avoid the emotions that come up around what is happening to her. I know that is not what I am supposed to do, but sometimes I can handle only so much. This time I chose to avoid it for a spell.

But then people started asking about my mom. I was asked, “How is she doing?” or “Is everything ok? You haven’t written anything lately.” And “Did I miss one of your posts? I haven’t seen anything about your mom in a while.” I could no longer avoid it. The story had stopped and readers were waiting for the next chapter. I honestly had six people in a matter of about two or three days ask me about her. These were not only expressions of concern from friends, but also a sign that it’s time, time to write again.

And thank you.  I appreciate hearing from you. It is good for me to talk about it, to confront the reality of it all. Thank you to those who helped pull me out of my safe bubble of avoidance. It was like being in my soft, warm bed, knowing that I have to get up and face the world, but I just want to stay safe just a little longer, simply because it is easier than facing the cruel reality awaiting me.

So here we go…

For a few months I had to force myself to visit her.  I was still visiting once a week, but it took all my will to get in my car and go visit. Each visit was much the same. The visits were full of me telling her anything I thought she might want to hear, helping feed her, and playing music for her.  What I got back was very little- a word here or there, a smile once in a while, but very little interaction. I had become sad and frustrated with our visits. Although I went into every visit with an upbeat attitude, I left each one a little more heartbroken.  Just as the disease takes my mom from me bit by bit, I was letting it take me as well.  I was letting the disease have the power.

Then, just before my son went off to camp for a month, we stopped in to visit Mom.  Jake was so excited to see her, although a little apprehensive to visit his grandma knowing what she might be like that day. You see, Jake has known his grandma through every stage of Alzheimer’s, and he remembers them.  He knew her when she would sing to him, rock him in the same rocking chair in which she rocked my sister and me when we were small. He knew her when she would take him to get a treat or on a walk, but he has also known her through every stage of the disease. He has seen her sit and cry. He has helped me when she was trying to eat Styrofoam plates. Jake has been present for every stage, and despite his age, at every stage he approached her with love, compassion, and patience. 

Jake and I walked up to Mom and I bent down in front of her and said my normal greeting of, “Hey Mom! It’s Molly. How are you today?” My mom turned to me, smiled her beautiful smile and said, “Well, hello! It is so great to see you!”

The silence was broken.

This visit was different from every visit I had with her the past few months. We all had a wonderful time, and it was what we all needed.  Jake needed to see his Grandma happy and doing well before he left for a month, and I needed to hear her voice.  I needed some sign, no matter how small, that my mother still exists. On that day, she was there.  Jake and I saw her and talked to her.

But soon the silence returned. The next visits were the same as before. That visit with Jake seemed to be an anomaly. No matter how much I said, how many things I brought up hoping to get a reaction from her, I barely got a word or two out of her.  These kinds of visits are tough, tough on the soul, and honestly, they can be boring.  I was constantly racking my brain for new things to say, music for her to listen to, or treats to take to her.  I had allowed visits to become stressful instead of accepting what they were and enjoying what I could.  This is what happens when you let the disease win. It takes your power, your hope.  But, despite all that, I kept going back, even when I didn’t want to go.

And then I got a reality check.

This week a friend’s family member with Alzheimer’s disease passed away. That was what it took to make me realize, once again, that my mom won’t be around much longer.  I cannot let the disease take away my joy and my gratitude for the time I get to spend with her.

Alzheimer’s disease will not steal my power. And so I resolve, again, to be strong, to be patient, to love unconditionally, and to keep going back to visit her, no matter what.

I am grateful for each time I get to visit her, hold her hand, and feel her soft skin. I am grateful that I get to feed her, take her treats, chair dance with her, and sing with her. I am grateful for each time I get to hear her voice, and I am eternally grateful for the support that I receive from family, friends, and the staff of the place where she lives. And sometimes I have to be reminded that there is no better time than now to remind her how much she is loved.

Wednesday, June 17, 2015

Eight Years

Eight years, yes, it has been eight years since my mom was diagnosed with Alzheimer’s disease.  That is a long frickin’ time to deal with a disease, especially one that likes to throw surprises at me. Just last week, it had another one.

Lately, when people have asked, “How is your mom doing?” I really am not sure what to answer. Most people are asking out of love and a bit of curiosity, but they probably don’t really want to hear the details. And I am not going to give them, at least not in this post. I want to focus on the miracles of the disease. So, here is the Reader’s Digest version of how things have been going lately.

My mom is in a wheel hair. Not the standard type, but a fancy one-a wheelchair that has a lot of padding and can recline. She doesn’t walk anymore. She needs help to be fed. She has to have supplemental shakes because she is losing too much weight and her two favorite words are “yea” and wow.” “Yea” seems to be her way of trying to be part of a conversation and have something to say or answer a question. “Wow” is a statement of excitement or her way of expressing that she really likes something.

These days, when I go to visit her, I do a number of things with her to pass the time. I tell her what is going on in my life. I let her know what the kids are up to, what sports they are playing or what their special interests are these days.  I talk about the weather outside, the holidays, or anything that I think she might find interesting or could possibly, by some miracle, understand.  I have a playlist of music I made for her and some days I play songs for her and sit back and watch her smile, and I listen to her try to sing. If there is music playing in the ward, I will sing to her and hold her hands and chair dance with her.

And I am lucky. Almost every time I go to visit her, just after I squat down in front of her, touch her arm and say, “Hi Mom, it’s Molly. How are you today?” she will turn her head and I will receive a huge smile and a twinkle in her eye because she knows who I am. Yes, she knows who I am. Call me crazy. Think that I am holding on to something I shouldn’t be, but she does not give this reaction to anyone else but me. I realize she doesn’t understand what a daughter is, but she knows I love her in a special way and this is what matters.

On to the surprise. Alzheimer’s disease is totally unpredictable. You never know what may surface and when. So, after months of her saying nothing or only getting those two lone words from her, I got lots more.

My son and I went to see Mom before I went out of town for a week and he was leaving for camp for a month.  My son knows you can’t expect any interaction from Mom, so we went in with no expectations. We walked in, I squatted down and said, “Hi Mom, it’s Molly,” and before I could get the rest out, she turns her head and says, a smile broad across her face, “Well, hi! It is so great to see you!”

This was the beginning of a perfect visit. She held our hands, sang, and chair danced with us. My son and my mom shared a treat, and when I gave her a hug and told her I loved her, she responded, “ Yea. Awwww, isn’t that nice.” Two sentences in one visit!

Where it comes from and what made it come out, I don’t know. It may not seem like much to some, but it was exactly what I needed.  Just when it has become harder and harder to go back for a visit, the disease gives me a break.  The universe reminds me who Mom is and helps me to keep fighting the fight, right by her side.

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