Monday, August 17, 2009


.....................Sometimes we get so caught up in the disease in our loved ones with AD that we forget day to day that those who are afflicted are still a person, a human being with feelings. A person who knew us and loved us, maybe someone who took care of us and made us a priority in their life. This is often the case for primary caregivers. If the AD family member progresses far enough along through the illness to the late stages, they inevitably will not seem to know us anymore, or even know who they are or where they are. The progression through the stages may last 5 years and upwards to 20 years depending on many factors, like when the diagnosis was made etc. A "Window" is when those cutrains are open and the light shines through, usually later in the disease when the victim has reached advnced stages and we do not know them as they were once as our mother or father, husband, grandmother. We loose that time in the day to day struggle, but then suddenly, the light comes through, and the fresh air is let in, a little piece of that person "busts" throughthe curtains of that diabolic disease process. I can give you an example in my own mother. She was diagnosed in 1979 with AD, by 1986, she did not really know me very well anymore. She had progressed from communicating verbally to only grunts and moans. (The reverse process of languege acquisition we see in an infant. She would look at me blankly, trying to recognize me, struggleing in her soul to capture the essence of herself; her essence as my mother. In 1986 in my second year of medical school, I was back visiting her in the nursing home in Cleveland. I had not seen her in about three months. She had not spoken a clear word in many months, and had not recognized me in what seemed to be eternity. I sat by her bedside for about a half hour, and held her hand. I talked to her about medical school, and told her that I was doing ok. She did not verbally communicate back to me, but yet she held my hand. After awhile, I decided it was time to go. I kissed her goodbye and said, "By Ma, I love you.....I will see you in a couple day, before I go back to school." I got up to leave and with my head down, slowly shuffled towards the door of her room. All of a sudden I heard her say, "Bye honey I love you." It came out of nowhere. Her words as clear as the sunshine. She was still there. She had not spoken a word clearly in perhaps a year. She let me know she was still there. That iwas about the last time I ever heard her say anything clearly. She died about a year later. That 'window' gave me hope to carry on, yet it made me miss her as much as ever. I consider those windows a gift to any caregiver.

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Talking about the book with the Lake Superior wind....... a calm day