Posted on: October 10, 2015 | 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.
I took Mom to the vet to see the kitten. She was, as all kittens are, adorable! She had chocolate brown fur and only ½ a tail. She was shy but very sweet and she and Mom bonded quickly. Mom decided to name her Lucy. We brought Lucy home and she was a great distraction and great company.
We went shopping and bought Lucy tons of toys and cat accessories. I also bought Mom a bunch of disposable cameras and she spent the next few weeks relatively content playing with and photographing Lucy. During this time I took her back to the neurologist and he agreed to increase her anti-depressant again. He also gave us information about the clinical trials that were being done in case we had any interest in having Mom participate. I researched all the trials and as much as I wanted to find something that could make her better we ultimately decided against participating. The trial she was eligible for required frequent trips to the hospital and two spinal taps. I just couldn’t see putting her through that in her state of mind. So I hung my hopes on the increased anti-depressant and Lucy.
I think the change in medication helped and Mom perked up a bit. Her sister Rose Marie came for a visit and I think that lifted her spirits as well. Mom and Rose Marie were very close and I think it was great for Mom to have her big sister there to talk to and spend time with. Things quieted down for a few weeks and we were out of crisis mode for the moment and life went back to what had become the “new normal”.
I was taking courses through the Alzheimer’s Association and starting to learn about the disease and how it effected Mom’s brain. I was fascinated by all I was learning and began reading and doing a lot of research on my own. The more I learned the more I wanted to know – and more terrified I was for the future. It was at this point I began to realize I was part of the problem and that my behavior and how I was communicating with Mom wasn’t helping. She was not going to be able to change to accommodate her withering brain. I was going to have to. I also became aware that most of the people in the “industry” were not well trained on dementia, so they were part of the problem too. I quickly learned that in Indiana memory care facilities are only required to have 6 hours of dementia training – and there is no training standard, required proof of knowledge or audit system.
At this point I decided I was going to learn everything I possibly could about Alzheimer’s and dementia. I was tired of learning the hard way and it was going to be up to me to be Mom’s advocate. It also dawned on me that this constant in and out of crisis was the “new normal” and it was going to be that way for a long while. I decided to enjoy the calm for the moment before the next storm.