Let me start by simply saying thank you!
Thank you for your tireless work in the medical field. You may be prescribing or handing her medication, and checking for side effects. Maybe you are the nurse's aide who helps her get dressed in the morning and reminds her where the dining room is. Are you the social worker who takes my concerned calls? Or the lab technician who draws her routine blood work? Maybe you are the one who did her chest X-ray when she had that horrible cough.
Whatever role you play in the care of patients with Alzheimer's disease, please know that I see you. I see how you care about and even love her. I hear you lovingly call her “honey” and “sweetie” and laugh with her when she is confusingly silly. You are so important in the life of a patient with Alzheimer's disease.
I am a healthcare professional myself, a nurse, but first I am human. I am the daughter of an amazing woman who has been stricken with a horrible disease. I would like you to see the person my mom was, not the person she is now. Everyone with Alzheimer's disease has a life story behind them. I would like you to hear Mom's. She had a life before this disease took her away from us and into your care.
My mother is one of 15 children, and was raised on a farm in upstate New York. Of those 15 children, seven of them have died from, or currently have, Alzheimer's disease. Our family suffers continually as we watch our dear mother fade farther and farther away from us. I hope you realize, that sometimes, you are not only taking care of my mom, you are taking care of her family. That sometimes your words comfort us and sometimes they anger us. We are really doing the best we can with this very important loss in our life.
So thank you for taking a step back — to see who my mom was before Alzheimer’s — as you care for her every day. And thank you for taking the time to get to know the stories of all the patients in your care with this disease. I bet you will find they led interesting lives. Please find the joy in them.
They need you so much. They need you to see them, to see they are just as human as you are. They need kindness and respect. They need you to help maneuver their very confusing days. They need dignity. They need silliness and smiles, compassion and love, patience and hugs. They need you, and their families need you.
About the Author:
Christine Dileone MSN, RN, is an Assistant Clinical Professor at the University of Connecticut School of Nursing. She uses the resources of the Alzheimer's Association in her teaching, specifically on communication techniques with dementia patients to maintain dignity. She is a Ph.D. nursing student at the University of Connecticut, and plans to continue research with individuals with Alzheimer’s. She coordinates a monthly Alzheimer's support group and is actively involved in the annual Walk to End Alzheimer's® as well as The Champions in the Fight Against Alzheimer's Women's Campaign.