Learning to Live with a Family Member with Dementia

Writing by: Jessica Substanley, Community Relations Director at North Woods Village at Edison Lakes

Hearing the news that a loved one has dementia, isn’t only devastating for the individual diagnosed but also for the family. I am speaking from experience. My father was diagnosed with dementia. He explained it as looking through a foggy windshield where he couldn’t get the wipers to clean the glass. I saw it as losing the person I knew as my dad. I knew something was wrong with my dad as his mood changed. He was more on edge, worried about everything, and easily angered. I noticed not wanting to be in his presence. Knowing now, what I wish I would have known then, I realize it was the beginning stages of Alzheimer’s. Once I was able to let go of the fact that my dad’s memory was fading and our current relationship would be changing, I was able to accept the diagnosis of dementia more easily. Initially, I was angry. My thought was that I was his child, I shouldn’t be the one that has to adjust. Growing up I always saw my dad as the one making the sacrifices for his family. Despite my anger and denial of the situation, I quickly learned the tables had turned. I had to learn a new way to connect with my dad. I had to educate myself so I could learn a new way to be present in my dad’s life and have a relationship with him.

Finally, I hit upon the realization that he was still the same person I always knew, loved, and respected. I just needed to learn his new limitations and adjust accordingly. Now, it would be up to his family to make sacrifices for him. Yes, our relationship was going to be different. I would no longer be able to have a conversation seeking financial advice, tap his experience with marriage or parenthood, or even win a debate with my dad. Instead, I learned how to adapt my actions to meet my dad’s needs. Connecting to existing community resources helped immensely. Among other things, I learned that reminiscing was a wonderful way to connect. Looking through photo albums, singing songs, and enjoying the moment all worked remarkably well. I was able to establish a “new” relationship and appreciate the time I was able to be present with my dad. I never took another moment with him for granted.