Posted on: July 21, 2014 | 0 Comments |
Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie’s Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.
Let me begin first with I AM NOT A WRITER. If you read this blog you will figure that out on your own, but I just want to state that up front. I am not banking on a Pulitzer. This is my account of our journey with Alzheimer’s Disease. Mom did some writing in the early stages of the disease about how she was feeling. I have included some of these writings so you can get an idea of her perspective and frame of mind. Keep in mind, these were just personal jottings that represent her stream of consciousness and she had Alzheimer’s, thus they are somewhat disjointed.
Ultimately I am writing this because I want to share my experience with others so they know they are not alone, so maybe they don’t make the same mistakes I did and, of course, to honor my Mom. It is supposed to be cathartic, but it isn’t. It is painful. But this experience is about doing something good with a tragedy. I hope it helps someone out there.
December 2007 was when this journey began. A journey that has brought me more pain and grief that I can ever describe. A journey that has brought me gifts that I can never begin to express my gratitude for. A journey that irrevocably changed my life forever and ultimately ended my Mother’s life.
Mom and I were best friends. We talked daily and about everything. She was my mentor, my role model, my hero. And for good reason, she had beaten alcoholism, left our abusive father, established a career, earned two masters degrees and raised three children on her own who all turned out healthy, happy and relatively normal. The quintessential independent woman.
In 07 I was living in Pennsylvania and Mom was in Chicago. It was the first time in my life we lived more than 20 minutes away from one another. She was in her early 70’s, living alone in a great condo, semi-retired, and managing a very active social life.
But then one day she called and said, “Something is wrong. I never can remember what day it is or what I was doing. I am losing my mind.” My response was “You’re not losing your mind. You are just flakey. You have always been flakey. Besides you are not working full time and don’t have a schedule to keep so why do you need to know what day it is?” A response that was supposed to be a bit humorous and lighten the moment – but in reality it was a response of fear and ignorance. It was a response that minimized her feelings. It was a response that I would never give now, knowing all that I know about dementia. But I didn’t know anything then and I didn’t know enough to even be concerned. Why would I be? My Mom was superwoman. We talked for a while and I reassured her she was alright. I would be home for the holidays and all would be fine. I was wrong. Nothing was ever fine again.