OurAlzheimer's writer Dorian Martin's mother died over the weekend from Alzheimer's disease (and Chronic Obstructive Pulmonary Disease or COPD). Dorian is a talented writer and a devoted daughter. She and I discussed publicly, on OurAlzheimer's, as well as privately, the questions we asked ourselves as we publicized our loved ones' struggles with dementia.
Dorian's mother was a bright, talented business woman, as well as a wonderful wife and mother. She first became ill with COPD in 1997. Alzheimer's disease followed. When one writes about the struggles of someone with dementia, as well as the struggles of the caregiver, things get very personal, very quickly.
I grew up in a time and place where people didn't discuss private things publicly. I still won't watch a "reality" TV show (as if I had time for television). I am horrified by some of the things people do to get "fifteen minutes of fame." I think our culture has become crass, in many ways.
However, bringing illness "out of the closet," so to speak, I think is healthy. Again, back in the day I was growing up, people would whisper something about so and so having "senile dementia," as if it were shameful. Depression wasn't recognized as a disease, but if someone had any kind of mental illness, and often it was connected to depression, it was covered up as much as possible. Again, mental illness was treated as if it was shameful.
My dad was a highly intelligent man. He was also a private man. After the brain surgery that was supposed to give his brain (which was injured during World War II) extended life left him totally demented, he - like many with dementia - would have an occasional moment of clarity. If family members were fortunate enough to witness this, we would say tearfully, "He's still in there."
One day Dad, who'd been on a rant about something totally imaginary, suddenly stopped, looked me in the eyes like he often did before the surgery and said, "Do they know what happened to me?"
He was looking out into the nursing home hallway as some staff walked by. I was shocked. I knew my dad well. I said, "Yes, they do. They know it was the injury and the surgery. They know what damaged your brain."
I knew that he wanted me to make known the reason why he acted the way he did. That it wasn't really "him" that was acting in such strange ways. He didn't choose this way to end his life.
Dad wanted people to know that this was beyond his control. I knew, then, that I would write a book. I did that, and I continue to write. Yet, I have still have had times when I've thought, "Is this what he would have wanted?"
I've also written about my mother and all the rest of the elders I've cared for. I've often had people tell me that the "love and respect you had for these people shines through." I pray it does. Because the only reason I have for writing about the ailments of those I have loved is to help others. The only reason I have for writing about my caregiving experiences - both the ones that I'm proud of and the ones I'm not so proud of - is to help other caregivers.
