Mom’s doctor suspected Alzheimer’s Disease in early 2001. I have to say I was concerned when Mom said she didn’t recognize where she was, but all the other cars were turning right out of the parking lot so she did, too. When she got to the traffic light she began to recognize her surroundings.
When she went in the car by herself, Dad worried the whole time she was gone. Was she OK? Was she lost? Could she find her way home?
The doctor ran every test he could think of to eliminate the conditions that could have similar symptoms until he ruled everything out.
“The only way we can know for sure,” he said, “is to do an autopsy on the brain. Obviously we can’t do that while she is living.”
The family was divided over the issue. Mom was upset to know her brain was dying. Dad didn’t understand the disease. My brothers didn’t want to admit this was Mom’s condition. And I was trying to embrace the diagnosis so I could be a strong ally against it. Mom needed someone outside of herself to be on top of this. Inside I was screaming, “Not my mom! This won’t claim my mom!!!”
One of my brothers was particularly stubborn about accepting Mom’s diagnosis until Dad died. He stayed with Mom a couple of days a week so I could go to my home and reassure my husband he wasn’t being abandoned. One day this brother called our youngest sibling and said someone needed to come immediately because Mom had told him to “get the hell out of her house.” He finally came on board because Mom had never talked like that to any of us.
Dad didn’t know how to handle Mom’s progressive decline. He told me to take her car to my house so she wouldn’t drive it, but when she got difficult he made me take it back. My brother disabled it so it wouldn’t start. At a doctor’s appointment the doctor asked, “How are things going? What do you think?” Dad answered, “I think she’s a little better.”
“You need to understand,” the doctor said, “she’s not going to get better. Her condition is going to progressively get worse. This isn’t going to go away. It’s going to worsen.”
Dad nearly cried.
When Mom insisted she could drive, I finally said, “We will go to the doctor and talk to him about it. If he say it’s OK for you to drive, fine, you can drive.” We all agreed with that. And we scheduled an appointment.
The doctor gave her a list of things to remember. He had her repeat them as he said them. Then he asked another question immediately followed by a request to name that list of five items. She couldn’t remember even one. She argued with him, though, that she could still drive. He would not budge. She was not happy that she was no longer allowed to drive.
These days she no longer argues about driving. She will say, “I want to go to my own home, but I don’t suppose that’s ever going to happen. I’m going to die here in this nursing home.” And I still offer words of hope, “Mom, if it wasn’t for the Alzheimer’s you could be in your own home. If they can find a cure, a medicine that will give you back your memory, you can go home with me, immediately. You can live with me.” “I’d like that,” she says.
I am trying to find the congressman or senator who is pushing the FDA (Food and Drug Administration) to approve a drug that, in trials, is bringing people’s memories back. He has three family members with severe Alzheimer’s. The FDA reportedly said it has to insure quality of life, to which this man has asked what kind of quality of life is it for someone who can’t remember anything? If you saw this news report (I did not, but was told about sometime after the airing) or you know who this man is, please leave a comment and let me know.
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