Alzheimer's disease is one of the hardest diseases to lose a loved one to. It seems we are powerless against it. There is no cure, no known cause, and no way to prevent it. Most researchers say that there is not even a cure on the horizon, and it may even be a decade or two before we have anything even coming close to making a difference for those who suffer from this disease.
People in this country spend more than one billion dollars a year on drugs marketed to treat it. These drugs may help to delay the sunset, but inevitable always occurs. We lose the ones we love to the darkness in their own minds, as we struggle to remember the light they once had in their eyes.
Did you know that in the United States, more than 4.5 million people have Alzheimer's? That number is said to reach 16 million by 2050. Currently, the cost of caring for them is about $ 100 billion a year.
Meanwhile, millions of families are suffering through the anguish of seeing their loved ones' minds and personalities crumble before their eyes. It's a helpless feeling. Alzheimer's just sort of happens, and once it does, there is no rewinding. It just gets worse. And worse.
I would like to share my personal story of how I was able to use the power of positive thinking to get me through the loss of my own father to Alzheimer's disease.
It was the summer of 1994. My family realized that my dad was becoming unexpectedly forgetful. He was diagnosed with Alzheimer's disease and was in the early stages of it. My dad was such a calm, peaceful and loving man. He was an amazing dad. I know he loved me so much, and I just adored him, too. It's a good thing I did know that, because it would help me in the years to come.
Up until that point, I really had not seen any really strong indications that my dad was losing his mind. But then, I got my first glimpse of Alzheimer's in it's early form. I was about twenty years old and we went to the bank together for my dad to make a simple transaction. My dad got really confused when talking with the bank teller, and, flustered, she turned to me and started to talk to me as if he was not there.
Later that day, we went to get gas, and it was at the time when the new system of paying for your gas at the pump with your ATM card had been installed at almost every station. My dad just could not figure it out. I had to do it for him. For the first time in our relationship, I became the adult. I'll never forget the look on my dad's face that day. He knew that something was not right in his head, and he was ashamed. I denied that from then on, I was going to make the most of every day.
Throughout the years to come, it was just a slow progress of forgetfulness. First, our home address, then the names of his friends, the names of my brother and I, and finally, the name of my mom was erased from his memory. My dad, usually so calm, started to become stubborn and even nasty! He told children in stores to shut up and called a woman standing next to us a fatso. Who was this person? It could not be my dad! My initial reaction was to scold him. But, I realized that it was not his fault, and that arguing or correcting him would only make it worse. It went against every grain of my being not to correct him, but I decided to let it go.
Then came the stories from the past, over and over and over and over again. I remember one time he told me the story about when he played clarinet in the band before the war (World War II, that is) twenty-something times over the course of an afternoon. Anyone else would have walked away and never returned. It took every ounce of patience that I had, but I sat there and listened, each time reacting as though I had never heard it before and it was the single most fascinating story I had ever heard. That is what I had to do.
My family and I tried to do everything we could build on the memories that he still had. I made a book of his life, a video montage of our family, and my mom thread him a huge party with all of his friends from the past and present. People came out of the woodwork for this party, because they knew, that even though he was slipping away, there were still some remnants of the man they once knew. This was the time to have a good laugh, and tell him how much they appreciated him. Soon, that would no longer be an option.
I, too, looked at this time as an opportunity. Never having been a family that said "I love you" very much, but truly loving each other as much as any family could, those words became an hourly ritual. Even if he did not say it back, it helped me to say it to him. If he wanted to eat a bowl of salsa for breakfast, so be it. If he wanted to collect golf balls from the golf course, I was right there beside him searching in the grass. I thought of it as our daily Easter egg hunt. The more irrational and fragmented conversation, the better. Bring it on. It did not matter. This was my dad, and I knew that one day in the near future, he would be gone. My motto became and still is … "do whatever works, do what you've got to do, and stay positive."
As the end drew near, I tried to use my power of positive thinking to somehow alter the course of destiny. I imagined every night that somehow, somewhere, before he died, he would have a moment of clarity. I had read somewhere that sometimes this happened with Alzheimer's patients near the end. I believed that he would look at me straight in the eyes and he would know me once again. I imagined the conversation that we would have and memorized the words that I would say to him.
Sadly enough, and to the best of my knowledge, that moment of clarity never came. My dad passed away in November of 2003. I saw him the day before he died, and I told him, with tears both joy and sadness in my eyes, that he was going to be a Grandpa. I put his hand to my swollen belly, and hoped beyond hope that he would give me a sign that he was there. But, that was not to be. My family and I laid him to rest, and two months later, my daughter was born.
Positive thinking did not bring my dad back to me, but it did give me the hope to get through a very difficult and trying time. It gave me the peace and the patience that I needed to make the most of the situation. All of the visualization that I did through those years has helped me see him in a new light today. I see him now in the eyes of my daughter, and I hear him in her laugh. He talks to me in my dreams.
Alzheimer's disease has been called "the silent epidemic" and coping with it can be difficult, especially in the end stages. My advice is to take a deep breath, and realize what is important. Realize the power that you have to create the best in this situation. Open your heart, and open your mind. Know that in the end (and the end will come), it's what you did with the time you had that will matter most. It's the last mark you make on your loved one's life. Do whatever works, do whatever it takes, and stay positive.