I had just completed the above piece for the Tribune Magazine and I was filled with dread.
This was not entirely unusual for me. I often second-guessed myself when it came to my writing. Should I have written a story a different way, included something more or omitted something else? But this was different.
As a newspaper reporter, I had been trained to keep myself out of the story. Readers don’t care about our problems, about our lives. Just tell the story and move onto the next.
Beside that, what was I doing, exposing my family to the scrutiny of hundreds of thousands of strangers? What right did I have writing about my parents when they weren’t around to tell me it was OK?
My parents’ were private people. They were not vain but they were proud. My mom wouldn’t take out the garbage without her lipstick on. My father did not believe in telling people how he voted. Was I preserving their dignity?
Within hours after the magazine came out, the answer was apparent.
The e-mails and letters told me so. In heartrending fashion, you told me your experiences with Alzheimer’s -- your sorrow, your anger, your courage as you dealt with the disease that had stolen your loved ones.
And one common sentiment kept emerging – “Thanks for letting me know I’m not alone.”
You are not.
According to statistics released by the Alzheimer’s Association, approximately 5.3 million people in the U.S. are currently living with the disease. For the family, friends and caregivers of those individuals, sometimes it helps to simply know you’re in good company.
And so this section of the website is born with that purpose.
I don’t pretend it will make any of the pain go away, but hopefully some of the isolation. It is intended to be a place to connect, to share your stories, to offer advice, to “talk” to those who know how you feel.
In my story, I quote a doctor who talks about the disadvantage Alzheimer’s is at on the national agenda because victims of other diseases have their own advocacy groups.
“People with Alzheimer’s,” he said, “are sitting in the corner.”
But people who care about people with Alzheimer’s don’t have to. Dear Missy, My father just died from dementia this summer. We didn’t go to the reunion, because we couldn’t afford to go back to Chicago again after the funeral tapped us out. I am married to xxxx. from high school, we have two children and we live in [California]. More to the point, my father was diagnosed in 2000 with Alzheimer’s. At first he lost his short-term memory and our lives were like the movie, “Ground Hog Day.” Every three minutes we would have the exact same conversation. “Dad, you have a doctor’s appointment in an hour, you have to get ready.” “You didn’t tell me about the doctor’s appointment, what doctor?” “Doctor Green.” “Who is Doctor Green? He is not my doctor, I am not going.” (repeat for the next half hour) The good part was that because my father could not remember, we just would make up answers until he would respond and do what we needed him to do. He was angry, suspicious, and I assume – terrified. He knew he was literally losing his mind. I think in some ways the beginning of the disease was about the hardest, because of the anger and the personality change. My mother died in 2001 and my father really deteriorated at that point. We had moved my parents out to California in 2000 because they were both so sick and we needed to take care of them. From 2000 to 2009, my father lived on his own with a caregiver who came in during the afternoons and evenings. He never left his home, never tried to cook, and seemed to be safe on his own. He slowly forgot our names, our ages, his name, his age, his profession, and everything about his past life. His personality totally changed. He went from being the most gentle and most polite person I knew, to a person who was rude and threatening with strangers. He went from a man who was obsessed with diet and exercise to a man who ate junk food and refused to leave his home. But, he was always loving and kind to his family and his grandchildren (even though he did not know their names). Education was always very important to my father. He was always embarrassed that he was the only member of our family with only a baccalaureate degree. Two years ago he asked me if he was in first grade. I told him that he had been in first grade 81 years earlier and that he was an accountant. He seemed very happy for a minute or two, until he forgot and asked me again. The only thing that my father remembered was that my siblings and I were very important to him and that he loved us. When I would come over, he would often tell the caregiver that she could leave, because I was there. He would sit with me and hold my hand while watching television. He would hit strangers. One morning this past May, my father refused to get out of bed and to eat or drink. We took him to the hospital and were told that it was end-stage Alzheimer’s and that his brain had lost the ability to feel hunger or thirst. We took him home to die and it was brutal. He literally starved himself to death. When we tried to feed him or give him something to drink, he would spit out the food or water, he couldn’t swallow and did not know how to eat. He also went blind. A friend of mine is a neuropsychologist and she told me that the parts of the brain that control appetite and thirst are close to one of the vision centers and that it made sense to her that he would lose his vision at the same time. However, even in the last few days before he died, he would pull me, my brother and sister toward him in bed and hug and kiss us. He couldn’t stand, talk, or really move, but he still knew who we were and he was saying good-bye. When he died, my sister and I were lying beside him in bed and holding his hands, and his caregiver (who had taken care of him for seven and a half years) was holding his feet. He just stopped breathing. When the dementia got severe, I felt like not only was my father dying, but that my childhood was dying with him. A part of my childhood was also going, because those memories of me were gone. The mourning process has been more difficult than I expected. I have had to take care of my father for the past nine years and suddenly that responsibility is gone. I miss going over to his house and seeing him sitting on the couch, watching television, and eating candy and potato chips. I miss seeing his face light up when I walked in into the room. Even with this horrible disease he was always my father and I will always miss him. I am sorry that you are going through this too. Merle
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