Bobbi Michele Spielman

June 22nd, 2018

My mom was diagnosed with dementia in 2013 and passed away this year. We realized something was wrong after my brother went to Florida to visit her. My mom had always been a neat freak. One time, after she saw a bug in our home, we moved. My brother called me during his visit and told me something was wrong. The house was a mess. After her dementia diagnosis, we mourned the loss of who my mom was almost immediately. 

Once I realized there was nothing I could do for my mom in terms of finding a cure, I wanted to do something for others. Shortly after my mom was diagnosed with dementia, I participated in a Walk to End Alzheimer’s. Within a year, I became the logistics chair for the Fairfield County Walk to End Alzheimer’s, a position I have held for three years. Friends and relatives might not always understand what caregivers are going through if they haven’t experienced it themselves. Finding a community of people who know what I am experiencing has given me a purpose and taught me that Alzheimer’s doesn’t have to be all suffering; you can help your loved one live with Alzheimer’s.

At my first meeting for the Walk to End Alzheimer’s, there was a gentleman who was young, vibrant and on the ball. Rather than saying that he was suffering from Alzheimer’s, he kept saying, “I’m living with Alzheimer’s.” His story made me hopeful for my mom’s future. I became inspired to find her an assisted living facility where she could have new adventures each day.

We researched a lot of different places for my mom. My mom had always been very social—I used to joke that she was like a college kid on permanent spring break in Florida, because she was so lively—so I wanted to find her a place where she could meet new friends. We used a resource called A Place for Mom, which allowed us to receive calls and information from various assisted living facilities so that we could find the right fit. My mom always said, “I don’t want to be one of those people you see sitting outside a facility in a chair doing nothing.” We found a place for her that had movies, game nights and a hair salon. We wanted her life to remain as normal as possible. I know a lot of people are not comfortable with the decision to place their loved one in a facility, or think they can provide the best care for their loved one, but after Mom moved there, I saw nothing but progress and happiness. She started doing a lot better than she’d been doing at home. My mom loved going to bingo, though she used to complain that everybody was so slow. They also had a happy hour at her facility, so she would have a beer every Thursday. This was her new normal, but it was nice to see her spending time with people who were in a similar situation.

Three years ago, my dad had a stroke and was diagnosed with vascular dementia. Now, my dad is also in an assisted living facility with engaging activities. He plays cards and on certain days, someone takes him out to a local casino for the day. On Halloween, all of the residents at his facility got dressed up. I think it’s important to live the best life you can under the circumstances, something the young man at that meeting helped me realize.

When dealing with a dementia diagnosis, it can often feel as if there is never any light through the darkness that comes with realizing your loved one will never get better. However, connecting with other caregivers and people living with dementia at Alzheimer’s Association events has helped a lot. Recently, we “painted the town purple” and got 45 businesses in our county to turn their storefronts purple for Alzheimer’s, since June is brain awareness month. There are now purple lights throughout our town. Even though we may not be meeting one another through the greatest circumstances, we’re all experiencing it together and you become part of a family. As a caregiver, finding a community has inspired me to bring Alzheimer’s to the forefront so more people can understand it.

This year, I attended the Alzheimer’s Association’s national conference in New Orleans.  Looking up at each board, where they displayed how much money each county raised for the walk, was inspiring. Finding support from other people who understand how I’m feeling changed my life. Every so often, someone will lose a relative or their loved one may take a turn for the worse, but I think it’s important to find others who can help you get through these difficult circumstances.

Bobbi Michele is a caregiver for her father who has vascular dementia. She also lost her mother to dementia. Bobbi is the logistics chair for the Fairfield County Walk to End Alzheimer’s, one of the largest walks in the U.S., and runs the Facebook group Fairfield County Alzheimer’s Community Chat Page.