by Josselyn Winslow
None of the six of us who gathered around our dining room table and voted to incorporate our organization in 1983 would have guessed that - forty years later - the organization would still be going strong. We had come together in 1980, the spouses and adult children of people who had dementia. The idea of coming together began when I went to a lecture entitled, “You and Your Aging Parent.” After I described my mother’s behavior, the woman sitting beside me turned and said, “You mother has Alzheimer’s, just like my mother.” Suddenly, I found someone else who understood the many confusing things we had been seeing in my mother’s daily life.
Years earlier, when my mother was in her late 60’s she said she was having problems at work. Mother had worked for years, first when she was right out of high school and then later, after my dad had died, she headed back into the office again. She was well organized and the best speller I had ever known. Now, she thought she had a problem. She went to the doctor about her concerns but he told her to “go home and forget it.” Mother quit working; we got more involved in her life. At first, we noticed little things. We went to a party – and she forgot her purse. A friend came by at 1 every Monday to pick her up for bowling but Mother was ready at 11 in the morning – and then, mad at her friend because she had to wait so long for her ride.
During the next several years there were many “little” things. We discovered Mother couldn’t separate the junk mail from the bills. We decided to handle that problem by getting a postal box and sorting the mail before we gave it to her. Because she was getting notices about unpaid bills, we set up automatic payments for household bills and an automatic deposit for her Social Security. One day she left in the car to go to the grocery store but by mistake got on the freeway and drove for hours before she returned home. That incident convinced us that it wasn’t safe for her to drive. Her car “developed problems” and “wouldn’t start”. We offered to take her shopping so she didn’t need to drive. She had a favorite black wool long-sleeved dress but when she wore it to church one hot July Sunday, we knew something was wrong. We scheduled a visit with a new doctor.
When mother and I were seated in the doctor’s office, he turned to her and said, “Now Dorothy, how old are you?” My mother smiled sweetly at him and replied, “No gentleman would every ask a lady that question.” Undeterred, the doctor continued the examination and then told us to return in a week. When we went back, the doctor said he thought she had “Alzheimer’s disease”. This was in 1980. It had taken us years to put a label on all of the things that we had been seeing. But, even with the diagnosis, there were no answers. Although we now knew Mother had a real disease with a name no one seemed to know much about it. That was when I met the woman whose mother also had Alzheimer’s disease.
Together we started looking for answers and for others who were dealing with similar situations. Each of the people we met had a different story – but every story had the common details of a person whose abilities to manage life’s daily routines had been compromised by the strange disease process that was commonly called Alzheimer’s. And, while we didn’t have a way to combat the disease, we knew we could look for information and support each other. As our group expanded, we moved from our dining room table to having support groups in different areas of Whatcom County. We gathered more information and started a newsletter. We decided to incorporate our nonprofit organization and take donations to help us grow. Year by year we were able to help more people with information, support and educational events.
When it comes to Alzheimer’s/the dementias - people would still like to “forget it”. But when someone special in your life receives a diagnosis of memory loss, Alzheimer’s or one of the other dementias then our organization, that was incorporated forty years ago, is there to provide information and support. No one wants to deal with dementia but if you are affected by Alzheimer’s disease or one of the other dementias, the people in our organization, Dementia Support Northwest want you to know “You are not alone.”