As a fiction writer, one of the skills I’ve developed is to get inside my characters’ heads and hearts. I need to feel what they are feeling and then spill that onto the page in ways that draw my reader in.
That’s what makes today’s blog so difficult to write.
I’m feeling the feelings, and it’s not fiction.
My mother had Alzheimer’s, and when she was diagnosed, I understood little about the implications. Because of that, I didn’t have that heart-stopping feeling of despair that some experience when my father told me the diagnosis. Over the years, as I understood more, I carried with me the quiet dread that my mother could have given me the disease in my genetic code.
Maybe you are staring a diagnosis of Alzheimer’s or some other form of dementia in the face. Or perhaps you have been thrust into the role of caregiver for an elder with this diagnosis, and you wonder if you are able to go the course. Today’s blog is for you.
Do I share or keep it a secret for now?
Because this diagnosis comes with a loss of control which grows as time passes, some 
choose to manage it by only telling close family. The problem with this approach is that maintaining the secret puts pressure on everyone who knows, and makes many of the possible supports unavailable. It’s a temporary measure at best.
Dr. Gregory P. Nelson is a professional speaker, coach and musician. He’s a published author and has an earned doctorate. In February of 2025, he was diagnosed with Alzheimer’s. As he shares his journey with an open, vulnerable heart, I am learning so much from this man.
Overwhelmed.
That’s probably the word I use the most these days.Part of it is that my brain simply has less capacity than it used to—but a lot of it is just the sheer busyness of this stage of Alzheimer’s: doing all the research, making all the appointments, trying to make big decisions, and sorting out what’s actually in our control… and what’s not.
Honestly, that’s one of the hardest parts of this journey: All. The. Decisions. 1
By sharing his heart and his struggle, Dr. Nelson gives us unique insights into his journey. In doing so, the world he’s reaching out to is able to reach back with love and support.
What does this diagnosis mean for my life ongoing?
One of the most impactful speakers I’ve ever heard was Chris Roberts. The stage was darkened, and when one light came on, we saw Chris sitting in a chair in one corner of the stage with his back to the audience. He later told us that this stance was how people with his diagnosis felt–in the room, but not part of the action. He countered this with a statement I will never forget. “I may have Alzheimer’s disease, but it doesn’t have me. It doesn’t define me. I’m living with it.” 2
What about my feelings?
You need to grieve. You have experienced losses, and there will be more. You may be feeling anger, fear, vulnerability, confusion–so many things. Meet with your family and friends and talk about what you are feeling. As many times as you need. Coming to grips with this diagnosis is a process. Spend time with those who love and care about you and talk, talk, talk,
What practical steps should I take?
- Make sure your will is current, and that you have powers of attorney for finances and care in place.
- With family and whoever is your main caregiver, look at what supports are available in your community at various stages of need.
- Talk together about living arrangements in the future. Do you want to age in place and remain in your home for as long as possible? What are the pluses and minuses? What would be needed to make that happen? If you were to move into care, what would be important to you if you were living in long-term-care?
Finally, an excerpt form a poem called The Overwhelmed Heart, by Dr Nelson.
Remind me I don’t have to figure it all out.
Help me let go of urgency
and choose what matters most. 3
- https://www.instagram.com/p/DJrqMMuyqu_/?hl=en&img_index=1
- https://www.efpia.eu/news-events/the-efpia-view/blog-articles/i-may-have-alzheimer-s-but-it-doesn-t-have-me/
- https://www.instagram.com/p/DJrqMMuyqu_/?hl=en&img_index=1