I Miss My Sister

March 16, 2018

My older (by one year) sister, Lucyann, now 60, was diagnosed when she was 58.  She was a well-liked (by peers and students) professor, a great daughter and the best sister anyone could have.  She cared for my dad during the last 10 years of his life, while she was still teaching and/or working at the university, until his death about four years ago.  During the last three years, we started to notice that she was angry a lot, particularly with my mom, for whom she had absolutely no patience.  She would not go to work and claimed headaches and/or migraines. She took a lot of naps and always went to bed early.  She would spend a lot of time watching TV, the same happy-ending movies or tv shows, over and over.  She was a great baker, but her cakes were definitely not the same.  When she stopped paying her bills, we realized something was very wrong and we convinced her to see a psychologist. To make a long story short, the psychologist ordered a lot of tests and referred her to a neurologist, and there it was: frontotemporal dementia (FTD).  She retired from work and applied for Social Security Disability, which was granted about nine months later. She cannot live with my mother, and my mother cannot live alone, so we had to separate them. My mom lives with my brother because she cannot live by herself anymore. Social Security is not enough to cover my mom’s bills, so we are selling her house to pay for her care. Lucy has reached the stage in which she cannot be alone either, so she spends time in Puerto Rico, Tennessee, and Massachusetts, where some of my siblings and I care for her. We are still figuring her out. Her diet has changed—sweets, soda, pizza, and hot dogs have become her favorite foods—so she has gained weight, and we had to upgrade her wardrobe. We never know when she will agree to exercise (mainly walk), but she will always agree to go shopping or to the movies. She has lost empathy and there are absolutely no filters, especially between brain and mouth. There is no secret she is able to keep. 

I miss her phone calls, advice, hugs . . . I miss talking to her. I can’t figure out what she is thinking when she is staring into space, and I think that she is actually unable to tell me. I hope she is somewhat happy. I hope she feels safe and cared for.  I hope she feels how much we love her.