Bright Eyes

A Brief Story of My Daddy and Me

Dr. Lori-Renee Dixon James

The James M. Dixon Foundation for Alzheimer’s and Dementia Research and Support, Inc.

An eternal optimist, kindness without measure, and a heart bigger than one can describe are the words and phrases that bathe my mind when I think about my father.  He was my very first best friend, and continues to hold that title, even in death.  He held my secrets, was my greatest adviser, and helped me through some of the toughest moments of my life.  When I was two years old, my father was unfortunately given the title of Mother and Father, when he became a single parent due to my Mom being taken too soon by Cystic Fibrosis.  When he was advised to give my brother and me up for adoption, he refused.  At that moment, he earned another title, my hero. 

My father had a great sense of humor, even when I didn’t think it was too funny.  Daddy had a habit of falling asleep on the sofa.  Once, I told him the next time I caught him sleeping, I was going to sprinkle water on his head.  (I was about 14 years old.)  I found him sleeping one night, and immediately proceeded to sprinkle a few drops of water on his head.  He exclaimed that he would get me back for that.  A couple of months later, I found myself being awakened at about two in the morning, from cold water running down my face, newly styled hair, pillow case and sheets.  When I opened my eyes, of course Daddy is standing there with an empty glass, laughing. 

When my husband and I decided to get married, he called my father to ask for his blessings.  Although my father loved my husband (even before he was my husband), he said well wait a minute.  I need to think about this.  I’ll let you know soon.  My husband thought he was serious. The next day, Daddy called to tell me that he had pulled his old tux out of the closet and it still fit.  Therefore, we could get married.  Later, he would ask me if I ever married that man.  He had forgotten my husband, and that I had been married for 22 years.

One of the last things my father said to me is, I don’t remember my life, but I know I had a good one, and I accept what fate has to offer me.  These words give you a glimpse as to how my father lived his life, which continued to reflect even as he moved through the many confusing, heartbreaking and devastating milestones of the disease. 

Immediately after I returned from my honeymoon in 1996, I learned that my father had prostate cancer.  His response, although he was only 70 years old, was that he had lived a good, long life, and whatever would be would be. While doctors were treating this diagnosis, they also diagnosed and treated stomach cancer.  Thankfully, he made a full recovery, with the stomach cancer returning only once.  Twelve years later, Daddy was diagnosed with lung cancer.  His response, I’ve lived a good long life.  Whatever the man upstairs has in store for me, I’ll accept it.  Two years later, he was given a clean bill of health, except I began to notice that he was more forgetful than usual, and his temperament began to change.

After a couple of years of joking that he needed to take Ginkoba, because he was having memory lapses and his reasoning skills were not as good as they had been, his doctor stated that he did not have Alzheimer’s, and the psychologist said that his memory lapses were typical for his age.  I asked my parents’ attorney to help make sure all of their paperwork was in order, because I was afraid Daddy may be developing dementia.  Her response was, Mr. Dixon?  I just saw Mr. Dixon two weeks ago.  He didn’t appear to have dementia.  I cannot express the frustration and anger I felt, trying to make sure my father received a proper diagnosis and care, while living 500 miles away.  My physician made recommendations for him to take to his doctor, because she said he appeared to be showing signs of Alzheimer’s disease, including a medication recommendation.  His doctor, refused to accept the possibility, and did not prescribe the medication.  As you can imagine, my frustration level continued to increase. 

A couple of years later, Daddy was 87 at this time, his doctor determined that he was suffering from dementia, still refusing to admit it was Alzheimer’s dementia, and prescribed the same medication my doctor recommended two years prior.  Of course, the medication showed no affect.  We don’t know whether it would have been useful, if prescribed sooner.  However, in the midst of all of this, I sought to learn as much as I could about the disease.  I read to exertion, talked to all of the doctors who would talk to me, observed everything, and began to participate in his care as much as I could, traveling to Sun City Center, Florida at least twice per month.   I learned about the stages of Alzheimer’s and what to possibly expect, and began to teach myself how to be the best Caregiver possible.  By trial and error, and using strategies I used working with profoundly impaired individuals, I learned how to navigate my father’s new state of being, his current ever changing normal, to help him feel more comfortable, communicate better, not feel like he was a burden, and helped him claim his part of the world, for as long as he had left.

Some of the things I did include:

• Relating his past to his present.  My father called me Bright Eyes most of my life.  When he would forget my name, I would wink at him, instead of trying to make him remember my name, or making other comments about him not remembering my real name. Eventually, he would remember my name, Bright Eyes. 
• Although Daddy was in what we were told, one of the best ALFs in the area, it was difficult to monitor his diet, especially when his taste buds were changing.  Daddy rarely ate sweets, and ate specific foods on a specific schedule. Yogurt, cereal and/or fruit for breakfast, with fresh squeezed juice, and a cup of coffee.  He switched to Almond Milk about ten years prior, and did not put cream in his coffee.  My parents (step mother) rarely ate lunch, enjoying maybe some fruit, Ensure, or cheese in the middle of the day, and at dinner between 4:30 – 5:00.  Processed foods were a rarity, as well as fried foods, or things considered soul food.  A glass of wine with dinner was a must each night.  However, it was always a good bottle of wine. Daddy rarely ate desert, enjoying a little ice cream every now and then.  However, although we were told he would have a choice of meals that were all healthy, it wasn’t true.  Although we were paying over $5k per month for his care, Daddy was not Medicaid eligible, I found the food to be full of processed carbohydrates, for example grilled ham and cheese sandwiches, with frozen fries for Sunday dinner, frozen pizza, few fruits and vegetables, and no sustained changes were made when I voiced concern.
• Daddy had become prone to UTIs.  I realized the importance of hydration before he moved into the ALF.  I could tell when Daddy had a UTI by the sound of his voice, or the mannerisms he was displaying, long distance.  Although the ALF provided large water bottles for all of the residents, I continuously had to ask them to make sure the water bottles were filled with water, and that they encouraged him to drink.  Unfortunately, Daddy experienced several more unnecessary UTIs.  It occurred to me, after the fact, that the less water they provided residents, the fewer bathroom breaks or changes residents required. 
• By observing how staff cared for, or did not care for, residents at the ALF, I learned how to Mindfully Care for my father and others.  This includes:
  • Taking the time to message lotion into his skin gently, and slowly.
  • Not rushing, when providing care.
  • Taking note of his needs and desires, especially when he could not express them in words.
  • Observing everything, to re-learn his habits, likes and dislikes, and how he would react to certain stimuli. 
  • Music is an excellent source of enjoyment and interaction. One day, my father had not spoken all day. As I was leaving, I told him I brought his jazz music.  He began to smile and snap his fingers, while repeating music, music.  He knew exactly what I was saying to him.
  • I often saw family members and care partners sitting in silence with their loved one.  Even when I could not understand what Daddy was saying, I continued to engage him in conversation, sometimes talking to myself.  I learned that playing games, discussing a favorite topic, completing puzzles, even if you are the one doing most of the work, is an excellent way to interact, provide stimulation, and fill awkward silent space.  Sometimes, activities have to be changed often, or may be played longer than planned.

My father had such a positive outlook on life.  He loved living, traveling, good food, family and friends.  He lived every day as if it was going to be his last.  Daddy was very slow to anger, never raised his voice, and tried to see the good in everything and every one.  We didn’t know what route Alzheimer’s disease was going to take with his life, only that it was producing someone we did not know. Learning to love and manage care for someone you do not know is not a small task.  It is very easy to feel lost, alone, sad, frustrated, angry, scared, and anxious.  It is hard to describe what this is like, to someone who has not gone through it.   However as a caregiver you also have to remember to take care of yourself, which often is overlooked, and try to be as patient and understanding as possible.   Although not easy, I appreciated who my father became, because of this disease, because I knew who he was, before this disease. 

Alzheimer’s disease quickly debilitated Daddy, after he was diagnosed.  He was driving his car, of course with someone along to give him directions, at the age of 89, in May 2017.  He was unable to walk by September 2017; forgot how to feed himself by December 2017; had lost his ability to use words, most of the time, by February 2018, and lost his battle in April 2018.  My father accepted what was in store for him with grace and humility.  I only pray that I will one day live up to his expectations of me. 

To learn more on caregiving tips or to find support near you, visit alz.org

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