Alzheimer’s Disease: A Hard Diagnosis for both Patient and Family, by Melissa Jones

My father was diagnosed with early-onset Alzheimer’s disease when he was 55. I was 12. Needless to say, life changed dramatically for both of us. My mom was incredibly strong throughout the next 13 years that my dad suffered, or at least she showed a strong front. As the disease progressed, every day became more difficult to manage, but mom tackled every challenge head-on. I, on the other hand, was angry, sad, confused, and frustrated. I felt like a victim as much as my dad. 

In hindsight, that was unfair of me. I couldn’t help it, of course, at the time I didn’t have any context to help it make sense. I had no other examples to compare to, nor anyone else that had a similar experience to talk to. We all got through it, eventually, but it left an indelible mark on me that I still carry today. Watching a parent slowly revert to child-like behavior is hard. I didn’t know how to react to that. It leaves vivid memories. 

Today I recognize the impossible strain it must have put on my mom. I can’t imagine looking at your spouse and watching that regression. Losing your optimism a little more every day. Giving up on dreams you shared together. I have so much more empathy now. And I have so much more admiration for how she handled it all. 

There really is no bright side to the story, only that the love we had for my dad held us together. We stood beside him all the way to the end. We took the best care possible and we have good memories from a time before Alzheimer’s took over our world. I’ve come to realize that people are incredibly resilient. It may not feel like it at times, but taking one day at a time and surrounding yourself with support is the best we can do to get through the hard times. 

If you’re dealing with this situation, buckle up. It’s a challenging road. Accepting your reality can be a great first step toward calming your mind vs continually operating in a state of denial. Seek out resources like the Alzheimer’s Association where there are many others going through similar situations. Ideally, talking with a professional for support can really help strengthen your mental health as well. And don’t forget to consider younger adults that are affected, whether it’s children, nieces, nephews, or grandchildren. They will witness the changes right along with you and it's important to consider their feelings as well as your own. They need help processing what’s happening. They need to feel safe and have an outlet to express their feelings. 

I recently wrote a book to address that need for adolescents affected by a family member or close family friend with Alzheimer’s disease. It was partially for my own therapy, but mostly to provide a resource for teenagers and young adults in this situation. Parents often try to shield children from things like this but what they really need is someone to confide in. This book is intended to provide a sense of comfort in knowing they’re not alone, even if there isn’t an adult to talk to. I share personal stories from my experience at every stage along the way and suggest ways for the reader to express their own stories, feelings, and worries in a personal journal just for them.

While there is still no cure for Alzheimer’s disease, some noted authorities on the subject feel confident answers will come within the next decade. In the meantime, there have been many studies that show lifestyle changes can help. Simple things like getting sufficient sleep, exercise, and even socializing and participating in your community seem to make a difference in delaying the onset of Alzheimer’s. I can assure you, I’m taking every precaution I can. I hope you do the same.