Hello, I Love You, Won’t You Tell Me Your Name?

In the fall of 2009, my mother was diagnosed with “moderate” dementia. A few months later my father died unexpectedly. After my father’s death, my mother agreed to relocate from the house where she had resided, for 51 years, in the western suburbs of Chicago, to live with me and my family, which consisted of two children, a husband, a foreign exchange student and two rescued greyhounds—in Indianapolis. It only took a day for the “difficulties” to surface.

My mother refused to allow anyone to change the TV channel from her beloved CNN, watched at the highest possible volume. This is akin to torture. There is only so much violence and unrest you can watch before you want to practice it on others. The dogs refused to eat. My husband’s top number for his blood pressure shot up to 170. The “enemy” was now living with us—and its name was dementia.

I told myself that my mother’s dementia had no effect on my personal life or my work life. But there were effects, of course. Turning into a thief, for example: I had to steal my mother’s underwear as well as her socks. The sock removal was required so she would finally wear compression hose to prevent additional blood clots in her legs. The underwear removal was necessary because my mother forgot that she needed to wear disposable underwear in case of accidents. This was particularly annoying to my children who often had to sit in the passenger seat of the car after I had transported my mother to a doctor’s appointment.

During her hospital stays, and during her time living in medical facilities, I became “the daughter.” I often heard, in the hallway outside my mother’s room, “has anyone seen the daughter today?” or “what is the daughter complaining about today?”

You have to be careful when you are an attorney and dealing with medical professionals treating a loved one. You have to restrain yourself from using your “superpowers.” You can educate yourself on medical treatment and options, and insist on reviewing medical records, and even being present during treatment. But, there is no room for a “scorched-earth” policy. You cannot stay with your loved one, watching how the staff behaves. You do not want the administrators to boot your mother out because you are just too much trouble to deal with. You have to practice patience. This is not a trait we learn in law school.

At one point, I faced the ethical dilemma of asking a doctor to increase my mother’s dementia medications simply because I could no longer cope with her anger. Was it me, or was it my mother, that truly benefitted from this medication change?

It is difficult, as an adult child, to take care of a parent. You must step into a role for which you are not trained. Attorneys do not like to take on tasks for which they are not trained. If you’re not sure if you are truly dealing with a “difficult” elderly parent, then I recommend a book by Grace LeBow and Barbara Kane,“Coping with Your Difficult Older Parent: A Guide for Stressed Out Children.” The authors include questionnaires to use in determining whether or you have a “difficult” elderly parent. “Difficult” does not refer to the physical burden of caring for a parent in a state of decline, but the emotional drain of trying to help a parent who is simply hard to deal with.

In my own case, I have found refuge in laughter, exercise, the support of those around me, and in my faith. In the book of Nehemiah, in the Old Testament, Nehemiah sets out to rebuild the wall around Jerusalem that had been destroyed ninety years earlier. There are enemies surrounding him on all sides, as well as enemies within the scattered group of men working with him. Nehemiah instructs the builders to keep one hand on their weapons at all times, leaving only one hand free for work. This has been my life for the past eight years: only one hand free for work.

You will be happy to know that I have not had to steal anything else from my mother. There is, however, the constant question, “. . . Where is my purse?” Her purse, with its one thousand emery boards and thirteen clear plastic rain bonnets, now sits in its permanent place of honor—the trunk of my car. It is “...on vacation,” as I have told her, until the next trip we make to the doctor. She satisfied is with the explanation. For now.