The Power Of One

A Voice Of Dementia

As a humble, loving soul living with dementia in Oregon, Dena Dotson touched many lives.  Today we honored our friend and advocate Dena who decided death with dignity was her choice.  On April 1st, 2015 we lost a precious woman who made a huge impact on people around the world.

Below is the link to Alzheimer’s Speaks Radio where people spoke about Dena’s impact. 

Here are some beautiful tributes submitted:

I will never forget the very first time that I saw Dena Dotson and heard her speak about her dementia. I was watching and listening to Dementia Chats and I saw a very beautiful young woman on my screen.  When I heard her speak my heart missed a beat. This young woman, wife and Mom had dementia! I was so deeply shocked and moved to tears as I listened to her speak so bravely and so openly about her experiences with her disease.  My Mom was in her eighties at the time and she had been living with Alzheimer’s for over a decade, and I knew that the disease affected younger people too, but, I had never met or seen such a young patient. Until, I came face to face with Dena Dotson, across thousands of miles from the United States to Ireland via Dementia Chats.

Dena’s courage. Her dignity. Her willingness to share her experiences to help others. Her openness. Her honesty.  Her empathy. Her generosity.  Her kindness. These were the characteristics of a very unique and special lady. And they touched the hearts of everybody who came into contact with her.

As her disease progressed I could see such a profound sadness in her eyes. Her beautiful face reflected the real tragedy of dementia. It struck in the prime of her life. Her life journey had given her the gifts of marriage and of motherhood. Gifts she spoke about with such joy and such love. Lewy Body Dementia was going to destroy that life, slowly, mercilessly, painfully and cruelly. Dena’s story was one of the saddest that I had ever heard. And yet, there she was, opening her heart to share her experiences with everybody. Answering our questions and sharing her life so willingly to help us to learn and to understand more about dementia.

When life became too arduous and when she could not face any more, Dena chose to leave this world on April 1st.  I know that I could never have lived my life carrying such a painful and cruel burden for as long as Dena carried hers, nor could I have done it with such grace and dignity. She lay her painful burden down and asked to be set free to find rest and peace. And I know that she has found it and that it will be hers, forever.

Dena left a powerful legacy to this world. She left the journey which she shared so honestly and so openly for us all to learn from, her life story.  We all know how easily society can overlook the crisis and the seriousness of Dementia. It is all too often written off so incorrectly as a “disease of old age”. Dena Dotson showed the world that dementia truly knows no limits. It does not discriminate. Her beautiful young life was shattered by this horror. Her story needs to be told over and over, far and wide. The world needs to hear Dena’s story. It needs to be shocked with the grim realisation that none of us are immune from this disease regardless of our age. Dena’s work is not done. Her story, her journey, her life, will continue to teach us and to deepen our understanding about dementia.

I will never forget you Dena. I know that you have found peace and light and rest. Whenever I write or speak about dementia, as an advocate, there will now be two life stories that I will focus on, my darling Moms and yours. You are both my warrior heroes!

Thank you Dena Dotson. I will never forget you. God bless you always.    Bernadette Brady, Dublin, Ireland.

Click Below to listen to Dena on Dementia Chats. 

This is one of many recorded webinars

We lost a hero.

Dena Dotson was a hero.

I meet Dena about 3 years ago, not that long after she was given her diagnoses. She was so unsure on what she could do next. She was struggling to support her family business and insure that her family was not overly impacted by this disease.  Dena continued to hold it together, even though so much was changing and no longer in her control; control she always had. She was the rock for the family, but her world was falling apart around her. She thought I was doing something great, that I was special. I told her she could be doing the same.

I remember her laughing and saying not me. I worked with her over the following months and she did thing she never thought possible. She was making a difference, but still did not realize it. We had many talks about taking one’s life and how frustrating it was that no one wanted to talk about it publicly.  She jumped right in and said I will do that. She had no idea what she was in for.

People attack us for talking about it, saying it our illness speaking dementia.  Others say we are cowards, taking the easy way out. And don’t even bring religion into it because it is a personal choice.

I know firsthand that none of that is true. Dena was a leader with more courage than most to do what she did. If you are not living with this disease it is hard for you to understand. I encourage others to do it. People living with a progressive disease with no hope for a cure should have the right to decide.

No one has the right to judge the decisions made by others, no matter what those decisions may be. The decision should be made when you are of sound mind. While Dena may have had some major issues in her life, I can tell you she could still make a good decision and she defiantly understood the consequences. There is absolutely no doubt.

It took true courage. The sad part is the system was not there for her to be able to live just a bit longer. I know she would have lived longer and she would have still been here today if things were different.

In her honor please use Dena’s name and bring change to this issue. We need to talk about it as so many of us are in so much pain every day.  While we may look normal, I can tell you we are not. Society needs to change and to make it easier for us to live our lives.  That same day I had similar thoughts of doing the same because I was so frustrated with dealing with our society. It happens to often.

Dena was a quiet person with a beautiful smile and she had a huge impact even though most of her work was not in the spotlight, we worked together to educate others. She was so welcomed and I always looked forward to her talks on Dementia Chats. When she spoke it was based on true knowledge.  She started to appreciate what she had done, and I can assure you her work will help reshape the world for this cause. One day in the distant future I hope to meet up with my friend and hero Dena Dotson. To her family I say: feel good, she is finally at peace, no longer having to suffer the mental torture that dementia brings.      Michael Ellenbogen

Dena was extremely brave. Most of us with dementia have considered doing what she had enough courage to do. It’s very sad that resources are practically non-existent for those of us living with this disease. She will not be forgotten.  Lauren U

“Think of me as one withdrawn into the dimness, yours still, you mine; remember all the best of our past moments and forget the rest, and so, to where I wait, come gently on.”  a prose Rose Lamatt shared on the radio show

My name is Barbara, and Dena & Lori’s mom was a friend and neighbor of mine when the girls were babies. When she was diagnosed with cancer and lost her leg I saw Dena lose her childhood innocence. I recall telling my mom Dena has become Susans other leg. She would not leave her mothers side. I know losing her mom affected Dena’s entire life and made her the sweet, shy loving woman she became as an adult and I could not be prouder of her. I recall a conversation with her mom before she passed and hearing her say that she knew Dena would do great things….and she lived up to her moms predictions~ I love Dena and will miss her terribly, but am so happy for her that her struggles are done. I truly believe she is at home where she belongs with her moms arms wrapped around her…finally♥ I am hoping to be part of your dedication to Dena, but wanted to share this with you just in case I can’t…thank you so much…Barbara

Dena was a very kind and compassionate person. After her diagnosis she set about determined to help others who had been recently diagnosed with dementia. She did this by making videos to help other adjust to their dementia diagnosis and find new purpose in life. She also tried to help others by joining a panel on Dementia Chats webinar series even when she didn’t feel like doing so. This is a tremendous loss to both her family and close friends but also to the dementia community at large. She continues to remind us that we are all vulnerable to this disease. Dena, rest in peace. Paulan Gordon

Please free free to leave your comments in tribute to this wonderful lady who shared her live with dementia so honestly with the world.

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