How to Persevere When Dementia Feels Like a Long Goodbye

I first started to notice something changing right about the time I got married. At the time, I figured it was a change in the relationship due to the fact that I had gotten married. Six years later, I found out that it was so much more than that.

Like many kids, my dad was my hero growing up.

I did not live with him due to my parents’ divorce, but I saw him every other weekend for most of my childhood. By the time I was in high school, he was probably my best friend. I could talk to him about most anything…and we both liked to talk. During those talks, I also found wise responses given with unconditional love and some humor worked in. My dad had the best sense of humor. I needed my dad’s support and I always knew I had it. All of this made what happened to him so incredibly hard to take.

For me to describe my father is difficult. He was a wonderful man who loved God and his family. He was intelligent, kind, and generous. But he was so much more than that. When I was with my dad, I felt a sense of peace – that no matter what happened he was going to be there with me, fighting on my side.

I’ve heard it said that dementia is a long good-bye and it is so very true.

Dementia stole my dad from me over the course of many years. I watched the man I loved and admired, who supported me and loved me unconditionally, slowly slip away.

My husband and I were married in 1995. As I said, I started to notice changes in my relationship with my dad just about that time. In 2001, we learned the awful news – my dad had Pick’s disease, which is a frontotemporal dementia. I was pregnant with my first daughter. My dad was 54 years old. By the time he was diagnosed he had been slowly developing symptoms, which is what led to the diagnosis.

I picked up on those changes even when they didn’t make sense. In a way, the fact that I recognized the changes in my dad so early was a source of peace for me.

It was a testament to how close I was to my dad and what a special relationship we had.

Pick’s disease robbed my dad of parts of his personality first. Eventually, it would take his memory and his speech.

My dad passed away in 2015. I didn’t think I could grieve any harder than I had already grieved during the course of my dad’s illness. I was wrong. My dad’s death ripped a hole inside my heart that I don’t think will ever heal and it has been eight years.

There was strength in the midst of all of this heartbreak. Not my own strength, but the strength that comes from God.

God’s strength carried me through this tragedy and continues to carry me to this day.

As my dad slipped away, I came to realize how much I depended on him for support and strength. He was my anchor in a very tumultuous life. Now, I had to find a way to go on without him. I had to find a different strength.

I had my husband and his love and support, but through the years I came to realize I needed a greater source of strength. I had been a Christian for as long as I could remember, but losing my dad changed the face of my faith.

I learned to lean on God more and to find my strength in Him.

Today, when people tell me I am strong, I reply that I am not strong and that what they are seeing is God working in me.

It is in heartbreak that we find our true strength – our ability to bear up under the pain. And it is God that gives us that strength to persevere.

Elizabeth Ann Harlan is the author of a children’s picture book called Matt, Sam, and the Swimming Unicorn, which was published in November of 2022. She is currently working on her second book. She is a married mother of two daughters, ages 21 and 19. Her older daughter has moved out on her own, but her younger daughter (who has autism) remains at home. Her girls were both part of the inspiration to write this book which is a lighthearted story about some very different animals learning to work and play together. I want to bring this message to children to help them see how our differences can be something that brings us together. She and her husband just celebrated their 28^th wedding anniversary. You can connect with her on her website.