Profiles in Courage

I am constantly amazed at the strength of the human spirit in the face of terrible events and unexpected crises. Most of us have witnessed this in past and current events and up close and personal some time in our own lives as I have. My admiration and respect for those people in my life is beyond measure.

My husband never ceases to amaze me. He has faced tremendous challenges in his life with dignity, courage and a philosophical attitude that I try to understand and let it inspire me. He lost his first wife and his oldest daughter to cancer. He has had his own bout with cancer and a quadruple heart bypass and now the diagnosis of Alzheimer's disease. I have never heard this man say "Why me?" I have never heard anger or bitterness from him. Of course, he has shed tears at the losses in his life, he has worried about the consequences of the illnesses he has faced and the disease he now battles but he remains constant in his calm acceptance of what life brings.

My sister is my best friend, my surrogate mom, and mentor. She faced breast cancer years ago at a time when she was completing her studies for her Master's in Education. She had a radical mastectomy and underwent chemotherapy while still attending school and working full time as an elementary school teacher. In class she would sit as close to the door as possible so she would have quick access to the bathroom in the event she had nausea caused by her chemo. She got her Master's degree and is a 25 year cancer survivor. She continues to provide wonderful nurturing service to others. Although, she retired after 36 years of teaching, she remains dedicated to the education of children as a volunteer and advocate. Her husband, ironically, also has Alzheimer's. She faces all of this with an unending unshakeable faith and optimism.

And there is Pam...our daughter. No, she was not my biological child. I did not carry her in my womb but I carry her and will always carry her in my heart. She was her father's child, smart, glib, a wonderful sense of humor and a life force to be reckoned with. She lived a year after her diagnosis of stage 4 colon cancer but what a year. Two months after surgery that removed 3/4 of her colon, she went on a 24 mile hike with friends in the High Sierras, she completed her oral examination for her PHD in clinical psychology and she courageously did Disneyland with me and the grandchildren that summer. She bought the car of her dreams and drove it with delight. We laughed and enjoyed the days. As she was undergoing chemotherapy, she would go in for her session wearing gorilla feet or martian ears telling her doctor that she was having curious side effects from her chemo. Every visit was an event and curiosity as to what her imagination would produce. On one of her final visits, she brought a lifesize "Creature from the Black Lagoon" to the doctor's office and covered it with a sheet and said she had finally succumbed to the total effects of the chemo. She fought to live till the very day she died. Her energy and spirit still permeates our home, our lives.

I am sure there are numerous stories out there of similar kind. These are mine. I carry them with love.

Finding Middle Ground

I really believe that the early stages of this disease are the most difficult.

When George was diagnosed, I went to work reading everything I could, preparing myself for the future. When the going gets tough, the tough get going. I was determined that we were going to be optimistic and face this head on. With expert medical care and "superwoman" in his corner, my husband was going to be alright for a long time and I....great wife that I am..would be there to hold his hand and lovingly go with him into the sunset. Denial is a wonderful thing, isn't it?

Well, as I am sure others have experienced, I learned quickly that Alzheimer's is not a predictable disease in terms of its progression or pathology. George has been a "normal" healthy functioning individual this past year. Some small "brain fades", every now and then, but only noticeable to me. He was forgetful and to all who interact with him, considering his age, this seemed understandable. But slowly, the obvious memory dysfunction started to show. His inability to read a calendar, unloading the dishwasher of dirty dishes, not knowing how to turn on the microwave, etc. The other day I found him pouring over the manual of his car because he couldn't find the fuel gauge on the display near the odometer. Small lapses of confusion....nothing big but enough, just enough to put our otherwise perfect world off balance. I see him every day...we talk...we share our moments and life seems normal...and I get sucked into believing it is in check, it is in remission. And I absentmindedly ask him to be my partner....put the dishes away, water the plants.....do the same mundane tasks that he has done in the past...without a thought, with skill, with efficiency. He asks me....again and again...with confusion and I lose patience...I answer with annoyance and then I see his face, his wounded and fearful expression , and like a sudden blast of cold water, I am aware of where we are today and the fear, the reality, the guilt and the sadness wash over me. It is like a chess game I play with this disease. A good day for me, for us. And when our guard is down....a bad day...something happens and we are back at altering "the plan". Trying to determine what he can do and cannot do. How much do I step in and take over without destroying his self confidence, his independence. Trying to find a middle ground.

The journey begins

It's been a year since my husband, George, has been diagnosed with early stage Alzheimer's Disease. It has been a good year. Yes...it has. Sounds crazy but let me explain. Having retired about two years ago, I had envisioned the fairy tale retirement, travel, playing golf together, doing all the things you see in the brochures that espouse "the golden years". Life happens and I have learned that you cannot plan your life, but you can be prepared.



We have learned a lot about this terrible disease and we have learned a lot about ourselves in the process. We have learned patience, determination, and above all, living in the moment. With Alzheimer's, the moments are unpredictable, sometimes heartbreaking, sometimes frustrating, sometimes funny and sometimes wonderful connections of love. He is getting the best of medical care from a team of doctors who work in tandem with us. As a result, he is for the moment doing exceptionally well. I am not naive to think he will be cured. But I am hopeful about the many ongoing clinical trials and new medications that are on the horizon. I do and continue to do extensive research on Alzheimer's and I will share what I know. But most of all, I will share our journey with you.