How would you react to a dementia diagnosis?
In the fall of 2019, one Iowa family heard the awful news no one wants to get. Their patriarch, Paul, was diagnosed with dementia. Paul is an intelligent, caring and deeply faithful man. He works hard and loves spending time with his wife, children and grandchildren. He’s a lifelong scholar and amazing storyteller. What would happen to him after a dementia diagnosis?
“It was devastating,” says Kristin, Paul’s daughter. “Just devastating. None of us wanted to believe or accept it. It just crushed everyone.”
Dementia Diagnosis: What It Means
What does a dementia diagnosis mean? Dementia is not a specific disease, according to the Centers for Disease Control and Prevention, but a general term to describe the impaired ability to remember, think or make decisions that interferes with doing everyday activities. Alzheimer’s disease is the most common type of dementia. There’s no cure for Alzheimer’s and other neurodegenerative dementias. But there are medications that can help protect the brain and manage symptoms.
And what happens after a dementia diagnosis? People experience a gradual to quick cognitive decline, including disruptions in language, memory, attention, recognition, problem solving and decision-making.
Preserving Paul’s Memories
This is where I enter the story. I had met Kristin’s husband Josh earlier in 2019. Josh knew all about my idea to start Circa Legacy and help people record and preserve their family stories. When he heard about Paul’s dementia diagnosis, he called and asked if Paul could be my first book customer.
Next, we set a date for an interview. I sent Paul and his wife Marcia a list of questions. I also asked their children and grandchildren to share some of their favorite Paul stories — the ones they enjoyed hearing him tell and would always remember about him.
And then we did the interview at Paul’s house. Kristin and Josh joined us. I recorded the three-hour interview and had it transcribed. Then, I began to organize stories in chronological order. I researched Paul’s childhood home of Kenosha and added a few fun facts. I looked up notable events from the year Paul was born to help add context to his stories.
Last night, during a 50th wedding anniversary celebration, the family gave Paul his book. According to Josh and Kristin, it was a huge hit with everyone! It’s so rewarding to have been a part of this family project.
Working with Circa Legacy Q&A
I asked Josh and Kristin if they’d mind answering a couple questions about the process and end results. Here’s my interview with them:
Q: Let’s go back to the beginning when you were first dealing with the dementia diagnosis. Why did a book with Paul’s stories appeal to you?
Josh’s answer: When something like this happens, the first question you ask yourself is: How do you preserve what you have? How do you keep the essence of these people you know? You don’t want that to go away. You already feel like you’re losing control of the situation. But this is a great way to encapsulate what you want to remember about them. And what they want you to remember about them. The cool thing about this book and about what you do is creating an opportunity to skip past the dementia diagnosis and see the stories and photos of what we remember and love about him.
Kristin’s answer: Just knowing that he won’t be around forever. He has such fun and interesting stories. I want my children to know those stories and for my future grandchildren to know them. This gives them a piece of my dad and my mom. Just to have some of those memories and feel like they knew them a little bit.
Also, this book let’s us remember the best times, the fun times. Even if it gets hard in the end, we have this book to remind us of all the good things.
Q: What did you want Paul to get out of this experience?
Kristin’s answer: I wanted him and Mom to just be able to sit and remember when things were fun and good. A dementia diagnosis is a hard, long road ahead of you. To have that little piece, when it’s a really tough day, to go back and have this book of memories of when things were good. It’s something Mom can pick up and hold and see.
And another part of this is that throughout my life, it’s been so important for my parents to give us wisdom and life advice. They’re in their twilight years and now we’ve captured that guidance and wisdom. They can keep sharing it with future grandchildren and great-grandchildren even when they’re gone.
Josh’s answer: I wanted them, especially Paul, to feel like he could tell his story the way he wanted it to be told. Especially with a dementia diagnosis, knowing what’s ahead. What do you want your life legacy to be? What do you want to be remembered for? I wanted to give him that opportunity.
Q: Now tell me about getting the finished book in the mail. What were your reactions?
Kristin’s answer: It was so much more than I was hoping it would be. I sat down in the living room and started reading it and just cried. It’s a piece I will have forever. It is awesome. It is so beautifully done.
And you made my dad the author of the book, which I didn’t know until I saw it. It was always my dad’s dream to write a
book. It was just so cool to see that. You allowed that to happen. He’d never be able to do that now. That was such a great touch. It’s going to mean everything to him. He was working on his doctorate when he was 65 or so, but had to stop. He just couldn’t get it finished. So to have this book, of his stories and his life, with his name on it, is going to be so awesome.
Josh’s answer: From a different perspective, I was quite impressed with the book itself. The finished quality is really nice. This is a really nice, hardbound, professionally done book. It’s something that can sit on the shelf and be pulled out to show people.
Plus, the ability you have to guide a family through the process is highly valuable. It’s one thing for us to say we need a book, but we couldn’t have done this ourselves. Your ability to come in and ask questions is really, really valuable and really powerful. You have a very valuable service.
Q: Finally, do you have any advice for families who get a dementia diagnosis? Any resources you’ve appreciated? Any tips for how to deal with it?
Kristin’s answer: It was just so devastating. I am grateful for our friends who gathered around us, especially my mom and her friends who supported her. Honestly, I think friendships are one of the biggest things you and your family need to continue. Don’t withdraw. Those relationships are so important. It makes Dad better to be around his friends and to be around his family, his grandkids.
Try not to internalize it and get depressed. And listen to your doctors! Take the medication, even if you don’t want to. Dad didn’t want to take it. He was really physically healthy and fit, and has never been on a medication. But he agreed to it and it’s made a big difference. Look for dementia and Alzheimer’s groups. Many churches have them. Finally, use resources like respite care when you get to that point. Being a caregiver is so difficult. You need to take breaks. Use your support system. Ask for and accept help.
Create Your Own Book
Thanks, Kristin and Josh, for your kind words and for allowing me this opportunity to work with your family. It was so much fun!
Whether it’s a dementia diagnosis, a special anniversary or birthday, or just because you want to do it, I’d love to work with you and your family to create a book of life stories. Go to the Contact page and send me a message. We can discuss timing, price and the process. It’s a great way to define your legacy!