About the Book HERE WE GO JOE our Families Journey with Dementia with Dignity

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I had been a special educator for over three decades and was looking forward to my retirement. It had been difficult work in so many ways but also rewarding. By the time I actually left the classroom, I was both elated and confused. In the following months after I closed this chapter in my life, I found myself wandering around without a professional purpose for the first time since childhood. I often wondered what God wanted me to do during this season and so I spent a lot of time in His word and conversing with Godly people. I tried to reopen my teaching career but each door seemed to close in my face. I knew this was God telling me that he had a different direction in mind for me and that I just needed to observe and trust in the new path that He was laying down.

I personally wasn’t expecting that the journey would lead to writing a book about my family and the year of uncertainty that led up to it. One hint that a book would be in the horizon started with my Bridge Club. We usually play once a month on a Friday evening. On one such evening, one of the players passed out a journal for each person to take home and write in. She had recently found herself between jobs and was also searching for a purpose. She was thinking about putting together a book about our group and the different lives we would experience during this one particular year.

On March 1, 2014 I wrote my first entry: Friends. What an incredible gift. Last night I sat around my friend’s dinner table sharing my life and comforting a friend in pain. This morning I arrived a little late to my prayers group and was welcomed with hugs and warm embraces. As we sat to pray, I felt hands that I have held for over a decade and thinking about how grateful I am to have these women in my life. As I came home, I received a call from a dear friend that wasn’t feeling well. As we briefly caught up on our personal lives. I once again realized how blessed I am. I was once told that friends are like a flower garden. If they are tended with care, a beautiful garden will be created for a lifetime.

Hours after placing my pen down, my father-in-law called to tell us that he had been diagnosed with lung cancer. We were not sure what this would mean to us but we knew in our hearts that it was going to impact all of our lives in a drastic manner. It was then that I began to journal the events that were taking place and how it was affecting all of us.

My journal was a place where I would write down notes pertaining to doctors’ appointments and the next steps we needed to take. As I flip through this initial journal I have found recipes, addresses, phone numbers, directions, but mostly my thoughts about what was happening in my life.

My daughter thought she had a tumor on her kidney and I wrote notes about our visit to several doctors concerning this. Thankfully, it was a benign cyst that didn’t need to be addressed.

Financial issues clutter the journal with thoughts about how God is providing for us even when we wonder how we will be able to manage our bills. I wrote in one entry:

God is pushing everything out of the way so it is clear that He is working. I am going to expect great things!

After Joe’s medical condition became center stage, I began to thank God that I wasn’t working and had no professional commitments to keep me from helping our family get through the huge obstacles that kept arising.

At this time, I had begun to write a children’s book and was getting my daughter, Hannah, to illustrate it through the use of clay animation. We were spending time going back and forth to the library to research children books and focusing on the ones that have made it to the Best Seller Lists. Hannah was constantly being distracted by bigger projects from different music groups and has yet to finish the illustrations for my book Broccoli Trees. It is a story of a young boy who doesn’t have a healthy diet and how it impacts his behaviors at school. It turns out great once he meets a good friend who has changed his diet and exercise routine. I have been telling Hannah that we need to get the book published before Michelle Obama leaves the White House since this is her big platform. But as an artist, Hannah will only do what she is motivated to do. So the book has been sitting on the shelf until her latest project is finished.

As I flip through my journal, I note that several ideas for children books are drafted during the long car rides down to South Carolina. One of my favorite stories that I wrote is about a little lamb named Amelia Curl. It follows the story line of the twenty-third psalm. I love thinking about this little lamb climbing the mountains and finding pastures full of green grass to munch on.

I had been reading a book by Sue Monk Kidd where she discussed the different phases of the life of a butterfly. She shares how important it is for the caterpillar to stay in the cocoon and if it comes out too early, the wings will not fully develop leaving the butterfly crippled. I gave this a lot of thought during this time of my own personal transformation. God needed me to stay in my own cocoon long enough to develop my own wings for the flight he has planned for me.

Life was getting crazier by the minute. Decisions about medical care and where Joe would end up kept rising to the top of all conversations and our personal thoughts. Doctors’ appointments and the waiting room experiences caused me to feel more deeply about people with chronic and terminal illnesses. Is this how the end of our lives should be spent? Going from waiting room to waiting room? Each trip to get Joe and transport him to an appointment made me more aware of how so many people spend their last days on this earth.

It was then that the first thoughts of putting this in the form of a book passed through my mind. Could our personal experience with Joe help others that are going through a similar situation? Then the questions and fears showed up. I had never written a book before and I wasn’t sure how to write this one.  After talking to lots of people and going to the library to do my research, I began the process of writing. And to my amazement, it just seemed to flow out of me.  All of the events of this past year were written down and could easily be brought to life.

After editing the book several times, I decided to let several people read it to get their honest opinion. The first person I asked was Lyn, from Croatan Village. Since a large part of the book is based on Joe’s time at the Croatan Village, I wanted someone who is closely connected to this establishment to read it. What happened next was a true sign that I should go forth in the publishing of the book. Lyn read over the book in one weekend and texted me several times to tell me how much she enjoyed it. This gave me the confidence to ask others to read it.

At this point I was approached by the owner of The Cheerful Word, a company that specializes in taking a manuscript and getting it ready for publication. It just so happened that the day I received the call was the day that I made up mind that I was going to pursue the self-publication route. I had read several books on self-publishing and knew I just didn’t have the skills to get the book set for Createspace to print and distribute it. The owner advised me to speak with Michael D. Butler from Beyond Publishing about promoting my book through social media. After discussing my book with him and having him read through the manuscript, we went into a business agreement to promote the book for several months before it was to go on sale with Amazon.com.

As I write this, I can definitely see an interest for the book on Facebook and other social media. The book has been edited several times and my daughter Hannah illustrated the cover. Now it is all a matter of handing the manuscript over to Createspace and seeing the magic happen. I have had many of my friends asking me when the book will be published so they can purchase one for themselves. I have shown the book cover to Joe but he doesn’t seem to understand that this book is about him. He just smiles when he sees the picture that Hannah illustrated and will typically say, “How nice.”

This process has also enlightened me about the impact Alzheimer’s has had on my family. When I was a young adult, my mother and I would go visit her family members that lived in different parts of the city. I will never forget walking into a small damp apartment only to find a woman sitting quietly on a coach with a blank stare glazed over her face. Lost in her own mind, with no idea of her surroundings. Was this my Aunt Mary, the same woman that I remember as being vibrant and alive? I hadn’t heard of dementia or Alzheimer’s before and was having a hard time processing how this transformation could have taken place. This particular visit has forever been sketched into the archives of my memory. But it wasn’t just my aunt that I remember as I think back on that day.  It was how my uncle spoke to her as he gently placed his arm around her back. His thin arms protecting her with the assurance that he would be there until the day they would part in death.

At the time, I thought this was an isolated case and that dementia wouldn’t ever be a part of my world. But as I researched further into my family line, I realized that my grandmother was experiencing symptoms before she was tragically killed in a house fire. In the last dozen years, both of my mom’s sisters have been stricken with this condition. One lived only a couple of months after the diagnosis and the other has lived over a decade. I often wonder if my own mother would have also walked this path if she had not died so young.

Given this condition exists so close to home, I have been very sensitive to how it could possibly impact me and my children. With this blueprint in place, I was hoping that there would be no more family members to add to the list of sufferers.  But Alzheimer’s doesn’t play fair and in our case, it came out of left field. Two years ago, Joe, my father-in-law showed signs of memory loss and bizarre behavior. A neighbor called to let us know that Joe was acting peculiar and that maybe we should take the four hour drive down to South Carolina to see for ourselves.

I remember my husband and I spending most of the drive captivated in our thoughts. Wondering how his father would be different and if we would have to take any action. But the weekend seemed to be mostly uneventful except for a couple of small mishaps. Lost keys that hung from Joe’s belt and cans of food located in unusual places in the kitchen. After discussing the concerns with the neighbors, we promised we would keep in touch and made our way back home.

As the months passed, Joe seemed to distance himself from us. He had stopped making the drive up to see us and rarely called. Whenever we did call, he always said he was doing well and quickly got off the phone. As I reflect back to these days, I often wonder if he knew something wasn’t right and wanted to hide it from us. Scared that life might have to change and in a direction that he couldn’t accept. And sure enough, over the next few months more symptoms of Alzheimer’s began to appear and had come to a point that we just couldn’t ignore.

So when people ask me why I wrote Here We Go Joe, I usually tell them about Joe and how our family has been forever changed. I want people to know that we are ordinary people having to make decisions that we have never been asked to make before. Some of these decisions worked out well and others hurt us deeply. No one teaches you how to move a parent from their home and go from being the child to the parent in one huge swoop. Nor are there instructions on how to make sure your loved one is safe when you know in your gut that they aren’t.

As I think back on my visit with my Aunt Mary, I now only have a taste of what my Uncle Tom went through those many days and nights of caring for her. To keep her at home was an incredible sacrifice that no one can relate to unless they have lived with someone with Alzheimer’s. And I am not going to even suggest that I know about the daily struggles that families go through when their loved one is fading before their very eyes. Each family makes decisions based on finances, health, family dynamics and many hidden variables that are exposed when their loved one becomes unable to live alone.

As the months have passed since Joe was moved, I have come to know a little bit about the individuals that have found their way to an assistive living facility. I have also read several books about other families that ultimately make the decision to place their loved ones in either skilled nursing facilities or assistive living communities. I have a strong conviction that placing a loved one in a facility outside of the home does not mean that they are loved less than the one that resides in a relative’s home. It all comes down to personal circumstances.

In recent decades, there seems to be a trend for older couples or individuals to move into communities that allow them to have their own home or apartment on the same grounds as more intensive services. My uncle and aunt moved into a community many years ago and moved from a cottage into an apartment that was more secure. Recently, my aunt has moved into a memory care facility that closely monitors its residents. Her husband is able to visit her on a daily basis and continues to live as independently as possible.

After reading the book, some people have been asking me about Joe. Last week, my daughter, Sara, and I drove down to New Bern to visit with him. I had called him on his eighty-fifth birthday and told him that I was coming down to take him out for lunch. My daughter, who is close to nine months pregnant volunteered to join me on the day trip. We also brought my four year old granddaughter, Ellie with us. Making it a girl’s day out. Ellie can be shy but recently seems to be willing to interact with people she doesn’t know very well. Since Ellie has only seen Joe a few times in her entire life, I wondered how the two would get along. I was hoping that the visit would be a good one for everyone but only time would tell.

When we arrived, Joe was sitting in his chair hooked up to his oxygen line staring out the window. He seemed excited to see us, even though I am not sure if he actually recognized Sara or Ellie. I have noticed that anytime a female comes into his unit, he will light up with a huge smile. Even though he didn’t recognize my daughter, he was excited to be in our company. After only a couple of minutes, Joe was ready to go out for lunch. He made his way out of the chair, took out the oxygen line and headed to the door.

Joe smiled at everyone as we walked out into the lobby. There was a big Fourth of July luncheon going on but Joe was not interested in staying. After getting into the car, we made our way down Highway 70 to our favorite restaurant. For some reason, Sara was craving fried shrimp and Joe wanted fish. As we made our way through the restaurant’s entrance, a young waitress came up to Joe and gave him a hug. I was perplexed with who this woman was until she came over to our table. She introduced herself and stated that she used to work at Croatan Village. She told me that Joe was one of her favorite people that she had met there and cared a lot for him. The attention that she gave Joe caused him to blush.

Ellie took my phone and started taking pictures of all of us as we waited for our meal. She even took a couple of pictures of the waitress. Joe seemed to enjoy Ellie’s company and seemed very content with being there. It brought me pleasure to think about how four generations were represented. On his way into the restaurant, Joe had picked up a free magazine that had lots of pictures of boats and motors scattered through its pages. Joe’s attention to looking at the pictures filled in the gap of time between Ellie’s photo shoot and the arrival of our lunch. He ordered a red snapper, slaw and fries which he truly enjoyed even though it took him an extremely long time to eat.

After lunch, we got back in the car and took a back way back to Croatan Village. He asked me where we were going and seemed confused when I told him we were taking him back to his new home. Each time we have taken Joe in the car and left his residence he has not recognized the place upon returning. After parking the car, we walked up to the front porch where Joe took a seat on a cushioned bench and pulled out his free magazine. Ellie climbed up beside him and smiled up at Joe. They truly appeared to be enjoying each other’s company. I was amazed at how quickly they connected with one another.

After a few minutes of small chit chatting, we said our good byes and walked towards the car. Joe didn’t seem annoyed that we were leaving, but instead appeared content to flip through the pages of his magazine.

As the months have gone by and the visits to Joe have become more frequent, a new found feeling of love and concern for him has blossomed in my heart. This man who became a stranger to us for so many years has now become a permanent fixture in our lives. The many visits we make have created a lifelong bank of memories that will be forever cherished.

Maybe it is the new fondness that I have developed for Joe that inspired me to write the book Here We Go Joe. As I have tried to put myself in his shoes and think about how frustrating it would be to live totally independent of others one year and then totally dependent the next, a sense of respect has arisen for Joe.  The words of the waitress who had worked at Croatan Village keep floating through my mind. “He was my favorite resident of all. He always had a kind word to say and actually cheered me up when I would talk with him.”

I have often heard people say that our loved ones will usually be the hardest on the ones that are closest to them. I have found this to be true when it comes to Joe. His frustration and anger over having developed Alzheimer’s and lung cancer had to be directed somewhere and why not us? I believe Joe knew that we would not leave him during this time and he could let go of his pent up feelings with us and in some cases on us.

It is funny how I am writing about him and he just called. His first words out of his mouth were, “Cora is Jay there? I want to go out to eat tonight and I don’t have a penny to my name. Jay has all my money.”

How do you respond to these questions when you know that he isn’t going out to eat and that he does have money? He just can’t remember that it is in his wallet that is probably hidden somewhere in his room. After telling him that we are going to take him to his favorite restaurant on Saturday to celebrate his eighty-fifth birthday, he seems okay and hangs up the phone.

As I look back over these eighteen months, I believe that God has had his hand on our family. We have grown closer and now experience the peace that we at first never thought we would have. Joe’s health is declining again and I am not sure if he has what it takes to recover from the lung cancer. Today, Mary Beth has taken him down to Morehead to have lunch at the Sanitary Fish Market for a plate of blues. She has rented a room at a nice hotel on the beach that has a waterfront view. My hope is that Joe can enjoy just sitting on the balcony and enjoy the salt air and sounds of the ocean.

Just the other day, I was blessed to watch my fourth grandchild come into the world. Many feelings and thoughts flooded through my mind as I experienced this miracle that God has created for me. I am sure that the next couple of months and years will be occupied with time spent with him as well as with Joe.  I used to think that once the children left the house we would have more time to spend on ourselves but for me, it has been exactly the opposite. We have given up a lot of our personal time to take a child to a doctor’s appointment, watching a dance recital, or just hanging out with these little people. And I wouldn’t trade it for anything.

Some people have told me that a book is like the birth of a baby. As time has gone by, I am beginning to understand what they are saying. Now that the book is close to being published, I know initially it will need a lot of my attention. I will talk about it like a mother brags about her baby, and cuddle it close to my heart. Over time, just like parents feel about their children, I hope that it will meet or even exceed the expectations I have for it.

No matter the financial gains, the stories I have already heard and know I will hear from the readers will be one of the greatest rewards I receive. To know that Joe’s story has life and sparks thoughts of similarities with others is extremely gratifying.

Lastly, this journey has brought me closer to an awareness of God and how he continues to create, even today. I believe He is designing my own personal path and only wants me to trust him as I move forward. By putting faith in him through these very difficult times has only multiplied my faith and given me the courage to conquer the next trial that will come my way.

About Cora Darrah

Cora has been a special educator for over thirty years and has worked in a variety of settings from kindergarten through higher education. She has a passion for the child with a disability and the innate ability to discover how to best reach their learning potential. She has a master’s degree to work with children with learning disabilities and has earned her National Boards. She has recently retired from working in public schools and is now using her skills to assess children and develop educational plans for children that are homeschooled. Recently, with the development of her book, Cora spends more time interacting with individuals that have Alzheimer’s or dementia with the hopes that her skills as a special educator can help develop plans that may help ease the stress of this condition.

She is a first time author. Here We Go Joe is being published by The Cheerful Word in Hendersonville North Carolina. Cora is planning to publish several more books.

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