I expected to be dead in 4 years. But my first impulse was to be an advocate – to tell everyone to get tested! And I tried to get support for my family. When back-to-back-to-back negative things happened in my life I learned to keep busy and engaged. The worst thing is to be isolated - to not know anyone who is sharing your experience or feeling what you’re feeling. That’s why support groups and volunteer opportunities are important.

We have it but it doesn’t have us. If you can laugh or smile through the bad days, it helps. I learned how to stay focused on the next minute because we don’t know beyond that what will happen. We cannot predict the future nor our overall outcome or final resting place. Due to my multiple health issues, I am in Illinois and my husband and family are still in Georgia. You just deal with it day by day. You have to keep going - there’s no way around it.

No one should be isolated! I tell others they are not on this path by themselves. Support groups offer a space where we can share our experiences with dementia. To say “Me, too!” and hear “Me, too!” and laugh with peers makes us feel better. We all have our own way of dealing with it and we share how we’re getting through it; we’re lifted up by one another. ZOOM has helped a lot!

Our spirituality helps us get through the hard times. The Alter program is helpful for family caregivers and there are so many opportunities early in the disease for people living with dementia to be engaged and involved at church. Music and fellowship are enjoyable to everyone regardless of cognitive changes. A person with dementia is just like you and shouldn’t be limited. Church is a great way and place to engage – the music and words bring people back.

I try to be involved in groups having the most impact: Dementia Action Alliance, Dementia Alliance International, Dementia Minds, Dementia Mentors, Black Dementia Minds, Alzheimer's Association/NIH Impact Collaboratory LEP (Lived Experience Panel) and the Alter program. These organizations have a lot of online classes and support groups. They give opportunities for people to learn and see others like themselves and be advocates for people living with dementia. I try to be a positive force for people who are newly diagnosed and try to lift the spirit of others. It’s not easy. We all have something we’re gonna go through. I tell them celebrate what you CAN do. The "cant’s" aren’t important.

I just hope I can make a difference. That’s it. It’s not for me. Everything I do is to give Him the glory and to encourage others that He IS, that He exists, and that He hears us and can help us; and not to feel sad but just put it in His hands. We don’t know what tomorrow holds, but we know who holds the future.