It may sound strange, but I do not recall when my father was diagnosed with dementia. Dementia has been in my family for generations, so it was kind of second nature to us. My father’s doctor also made sure to tell us what to expect and when to expect it, which helped us prepare.

One of the biggest things you learn from caring for a person with dementia (besides patience) is how to let go. You must let go of the person you “used” to know and embrace the new person in front of you. It is a very difficult task because there is an attachment to the personalities of the people we love. However, people’s personalities are ever-changing (including our own), and we learn to accommodate those changes.

As my father adopted new quirks, the saying my family used was, “That’s just Dad.” Because he was still our dad, even with the behavioral changes.

My father was in the early-stages of dementia for many years, and my mother did a fantastic job taking care of him. He knew exactly what needed to be done and when it needed to be done, making it seem as though the dementia had disappeared. However, after she passed away, he began to regress. This became apparent to me when we were visiting her grave and he saluted her.

It was then I knew it was my responsibility to continue what my mother had started.

To give my father the proper care he needed, my husband, Eric, and I moved him into our home. Although it was nice being around my father, it was not always fun and games. There were days that Eric would come home after work and I would greet him with, “Just give me 20 minutes of alone time.” That was the telltale sign of a bad day.

Despite the hard times, my father helped out as best as he could. He was always ready to vacuum or do some other house chore that I am sure my mother was having him do for her. Eventually, he even started calling me “Mom” whenever he saw me in the kitchen. I never questioned the name, as I believed it was just something that reminded him of my mother.

When my father progressed to the mid-stages, we worked on giving up the car keys, drinking, and cigarettes. I feel lucky to say that we never got into a single fight over it. With these things out of the picture, it was important that we found something new that my father could enjoy. We discovered that the senior center in our community held weekly meetings for games and other activities, so we tried it out. My father loved it, and looked forward to being picked up by their bus every week.

Once my father progressed to the late-stage, his functions rapidly slowed down. One day, he came to me with the big print newspaper and said he did not want it anymore. When I asked him why, he said, “I don’t know the words.”

This stage was, without a doubt, the hardest part because I knew I had reached the limit on what I could do for my father and that his care needed to be placed in the hands of the professionals. It is tough to not feel bad or guilty for “giving up” care, but it was essential for not only my father’s health, but me and my family’s health as well.

Everyone, both the patient and the caretaker(s), experiences dementia differently–but the sacrifices we make are the same. Dementia can be a very isolating and devastating disease, which is why I, with the help of Eric, started the DFCI – Walworth County. We want to do whatever we can to make it easier on others going through what we went through by providing resources and spreading dementia-friendly practices throughout Walworth.

We are dedicated to identifying, cultivating, and continually supporting communities and equipping their leaders with strategies to create dementia-friendly environments that increase awareness through education, resources, and inclusive programs or activities that promote respect, compassion, and support.

We are honored to have the opportunity to make such a change, and extremely grateful for everyone’s support in making the future dementia-friendly.

-Bernadette and Eric Russow