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.
Lucy the kitten was a Godsend. She was adorable and playful and great company for Mom. But even the joy of a kitten couldn’t stop the degradation of Mom’s brain. Eventually, the calls began again and Mom moved back into a state of distress. The difference was this time the calls were also coming from the assisted living facility staff as well as Mom.
A few days later my cell phone began to ring. First the Executive Director called and asked for a meeting with me right away. That call was followed by Mom hysterical and somewhat incomprehensible. I told them both I would be right over.
I met with the ED first and she sat me down and told me she was starting to think that maybe Mom needed a more care intensive environment, something that catered to memory care. She said we should start looking around and consider moving her.
I think I lost it a bit at that point. I looked at the ED and said, “What? Seriously, another move? But you said you could handle her care. You said you had lots of residents with Alzheimer’s! You said she was a great fit for your community!” The ED explained to me that they were not a memory care facility and that they did not have measures in place to keep her from wandering off the property or getting lost and that that was becoming a concern. Apparently, Mom had gone down to the pond in the back of the property to pick some wild flowers that morning. A staff member had seen her and assumed she was lost and was going to fall into the pond and drown. The staff member ushered her back into the building, much to Mom’s chagrin, and immediately reported “the incident” to the ED, which triggered the call to me. She explained that the property was not “secure” and that there was no way to keep Mom from leaving the building unsupervised. “What if she walked up to the highway and got hit?” “What if she fell in the pond?” she said. The ED went on to say that as much as the staff liked Mom, they could tell she was struggling. She was getting agitated easily and frustrated. The night before she had been very unhappy about the dinner selection and had pitched a bit of a fit about it to the ED. They feared Mom was starting to have “behaviors”. I knew enough from the dementia training and reading I was doing to understand the logic behind their concerns and why we were having this conversation. At that moment, however, I wasn’t in the most understanding or logical place. So with as much grace and dignity as I could muster, I shut my mouth and stormed out.
I went out to my car and cried for a few minutes and then called Scott. He let me vent and cry some more and eventually talked me down and assured me it would all be okay. Somehow, it would be okay. I got myself together and went back inside to go see Mom. When I got to her apartment, she was in pretty much the same state I had been in, 15 minutes earlier. Mom immediately began to tell me how unhappy she was at “the asylum” as she called it. “I can’t stand it here another minute! The food is awful and I don’t have any friends or anything to do! I went out this morning to pick flowers and they dragged me back in here like some kind of inmate! I can’t even go for a walk! I am bored and lonely and I just hate it here!” I tried to console her, but she just kept insisting it was so boring there and she just couldn’t stand it. My frustration bubbled up again and I told her she wasn’t trying hard enough to meet people. “You think everyone here is old and stupid”, I said. “You won’t go to any of the activities, you won’t leave the apartment!”, at this point I was yelling. It was the first time in my life I had EVER raised my voice to my Mother. She looked at me and screamed “I AM TRYING!” and then she burst into tears and just fell to the couch and sobbed. I was horrified at what I was witnessing. I was disgusted with myself for losing my cool with her and making the situation worse and I was pissed, just in general. So I dropped to the couch and sobbed with her. Scott was wrong. It wasn’t going to be okay. The “new normal” was NOT okay. But it was what is was and I knew that wasn’t going to change.