During Christmas 1993, he was the regular fun-loving jokester that Heather, my 13-year-old sister, and I were used to. At first, the symptoms were very slow and we all thought he was going to be fine, maybe just a little forgetful and giggly at times. Shortly after Christmas his boss started noticing small signs that there may be a serious problem, and our Dad was placed on disability leave from work.
In 1994 we were referred to Dr. Myron Weiner, who was involved with studies of the brain and memory at UT Southwestern Medical Center. After another round of tests, he was diagnosed with Alzheimer's and assigned to a study group testing several new Alzheimer's drugs. At the time, Dr. Weiner gave our Dad five years to live. We were stunned. He had just turned 47.
My Mother was determined to take care of him at home without the help of a nurse or a nursing home. We all started noticing little things like him taking the trash out 20 or 30 times a days, warming up TV dinners in the microwave and eating them one right after another all day long. It appeared to us that he had forgotten that he had just eaten. He would accidentally start fires all over the house by throwing lit cigarettes into trashcans. He placed plastic plates on top of hot burners. He blew out our microwave by placing items wrapped in foil in them. We had the fattest--and happiest--cats and dog in the whole neighborhood because they were also fed all day long.
One day while my mother was napping he found the car keys and drove the car into a ditch. Somehow he managed to walk home. The car remained in the ditch running for hours before police found it. It was totaled. No one is sure how our Dad survived the accident, much less found his way home.
Finally, our Mother realized that she could not safely take care of him anymore and he was placed in a nursing home. There he deteriorated fast. By Christmas 1995 he barely recognized us. You maybe saw a little spark, but not much. He remembered faces and names, but couldn't match the right faces with the right names. In fact, we usually ended up with the cats names before our visit was over.
Then in 1998 he broke his hip in a fall. We were told that when he awoke from surgery, because of the anesthesia that was used, he might recognize everyone and it may appear that all of his Alzheimer's symptoms would be gone. The doctor told us not to be alarmed because that scenario happens often. He also said that when the effects of the anesthesia went away, so would his memory again. Our Dad had not spoken a word to us in years or even recognized us, but for an hour in the recovery room, we were able to talk to him and fill him in on the years of his life that he had missed. He met the man I was about to marry for the one and only time. It was our family's last chance to say goodbye. We just didn't know it at the time.
Shortly after his surgery, he wandered off and ended up in the middle of a very busy street. Luckily, it was late at night and he was not injured. He was then moved to another nursing home with a specialized, locked down, Alzheimer's unit. He was there just over a year when a nurse found him in his bed not breathing. He was rushed to the hospital where the doctors did regain his heartbeat, but he was in a coma and placed on full life support. We stayed at the hospital overnight while we waited for other family members to fly in and say their goodbyes. The next day, he was taken off life support and was gone almost immediately. He was 52 years old. Dr. Weiner was right--he died almost five years to the day after he was given his diagnosis.
He never got to see his youngest daughter graduate from high school or walk his oldest daughter--me--down the aisle at her wedding.
Alzheimer's is a disease that affects the whole family, not just the person with the disease. To this day, almost five years later, my sister still hasn't come to grips with everything. She misses him terribly, has trouble sleeping, and now battles depression. My Mother was diagnosed with lymphoma barely a month after he died. Since her diagnosis, she has had two surgeries to removed affected areas. She was also diagnosed with a brain tumor that was luckily benign. My Mother's constant worry about my Dad and his illness led her to neglect her own health and probably contributed to her cancer. She also battles depression and lives in an assisted living home now.
A year after our dad's death, my sister and I decided to volunteer for the Memory Walk. It was the first time we had done anything with the Alzheimer's Association, or really admitted to ourselves how therapeutic it was to be around other people who had been affected by this disease. I then got involved with the Alzheimer's Junior Women's Association--AJWA. The Alzheimer's Association helped show us that there are others dealing with the pain and frustration, and AJWA has given me a channel through which to help others as well as myself.
I have met some of the greatest and strongest women I have ever know through the Association. I am a better and stronger woman for being involved and hearing the stories of others. I am always amazed at how many people are affected by this disease. Ninety-percent of what we know about Alzheimer's disease has been discovered in only the last 15 years. We have come so far and have so much farther to go. AJWA gives younger women a way to contribute and a support group of other women dealing with the same issues.
Everything happens for a reason--good or bad--and I an blessed everyday that I am given the opportunity to be involved in such a worthwhile and fun group of amazing women.
For more information about AJWA, please contact Hillary Reeder at 214-526-1270.
