This patient isn't letting her diagnosis stop her from being active. Learn about how she strives to remain positive, despite dementia.
Photo: Michelle Gustafson for The New York Times
It’s early morning at the local grocery store. To the few people who are getting their shopping done at this time of day, Laurie Scherrer looks like any other regular person who is busy crossing items off her shopping list. The truth is that Laurie is getting her groceries done before the store gets too busy. That’s because as the store gets busier, the noise of all the shoppers gets louder and louder. And, all that loud noise is confusing for Laurie.
Laurie, a former workaholic and mother, is definitely not like every other person in the store. Laurie has dementia. At the age of 55, after finding herself unable to do simple math equations, losing important customer information and finding that she was unable to keep up with her busy life as a sales executive, Laurie took herself to her doctors. After a battery of tests and the devastating diagnosis of dementia, Laurie was told to quit her job, get her affairs in order and wait for dementia to take-over. That was it, for all intents and purposes, she was being told that her life was over.
After letting herself absorb the information, she decided that there might be more to having dementia than letting it simply gnaw away at her brain, taking away her memories, independence, and joy. So, Laurie made a plan that would allow her to maintain her life as best she could and keep herself as active as possible, even as the disease progresses.
The first thing she did was accept that she had dementia. She had to go through a roller coaster of emotions (which is completely normal) to accept that dementia was now a part of her life. Along with that, acceptance came to her resolve so that, despite the disease, she would still live her life, help others, and always be grateful for the joy and beauty all around her.
Putting her plan in action
One of the items on her list was to learn as much as she possibly could about Alzheimer's and her subsequent diagnosis of frontotemporal dementia. This gave her and her family a good understanding of what they could expect and help them plan for the future. In Laurie’s case, because of frontotemporal dementia, she knows that it will eventually attack the frontal lobe of the brain - and have a significant impact on her decision-making skills, how her behaviors will be controlled, her emotions and even her language skills.
Through her research, Laurie learned about an international online group that connected people who are dealing with cognitive impairment with one another. The website, Dementia Mentors allowed, Laurie to get the full picture of her disease by connecting and corresponding with someone who was going through the exact same thing.
It also allowed patients to share strategies to ease symptoms, dealing with medication and helping them laugh at the silly things that seem to crop up when living with dementia. For many, it’s a refreshing way to talk about the disease and its impact on a person, their life and their family, away from the medical jargon. It meant that she was able to connect and relate to real people using everyday words to describe what they are going through and finding support and accessing resources at the same time.
Getting affairs in order
Step two of her plan was to get all of her affairs in order. This is by far the most daunting task for anyone to undertake. With the help of a lawyer, Laurie was able to designate different people from her support circle to step in when the time comes. This gives Laurie peace of mind for when the disease progresses to the point where she is unable to take care of herself. Medical and financial decisions will be made by those she trusted and essentially hand-picked.
It also allowed her to make sure that the responsibility wouldn’t fall squarely on one person’s shoulders. She knew that dividing up duties to multiple people would help to ease the burden just a little bit. It was important for Laurie and her family to take care of this side of things early in the progression of her disease. She wanted to be able to make the decisions and sign all the legal documents when she fully understood what she was doing and more importantly, why she was doing it.
Another part of getting things in order is planning for the financial future. Laurie and her husband have talked about what will happen when the time comes for long-term care. She knows that their four-bedroom house will have to be sold and that savings will need to be dipped into to ensure that she has care and support at all stages of her disease.
Her kids are also part of these conversations so that nothing comes as a surprise to anyone in her life. While Laurie researches her disease, she is also learning what kind of financial support is out there for those who are like her, who need help paying for medical care, medication or personal support.
Understanding her own battle with the disease
Another step in her plan to live a life full of joy is to figure what her triggers are and then, implement strategies to deal with them. This means that Laurie had to adjust her routine to fit within the context of her disease. She learned that noise, particularly in grocery stores, can cause confusion and so, she changed the time she went shopping. She knows that sometimes she will have bad days and that sometimes her busy life will catch-up to her. Afternoon naps, her family's support, and her understanding of her disease are all part of how she deals with dementia and its effects.
Sharing her journey with the world
With her plan in place, Laurie decided that she needed to share it with the world. With the number of people developing Alzheimer’s disease climbing steadily, she knew that she would have an audience for her musings. And so, Laurie started blogging about her journey. Dementia Daze has a steady group of followers who are not only eager to learn about Laurie and her disease, but also wanting to access resources and information to help them or a loved one with dementia.
Laurie is very open about her struggles with Alzheimer's. She has admitted to sometimes forgetting how to do regular day to day tasks like cooking. She also talks about her bucket list of adventures that she wants to go on before the disease takes away her ability to travel, including R.V. trips and scuba diving. She also talks about being an advocate for those with the disease and how her advocacy keeps her busy.
Laurie says that “she still has so much to do” and plans to do it all with as much joy as she can. Thanks to her plan, putting things in order and essentially getting ready for the inevitable, she will thrive.