For anyone facing the daunting reality of Alzheimer’s caregiving, Sonya Jury’s memoir, “Mom Forgot My Birthday: A Daughter’s Journey Through Alzheimer’s,” provides an unfiltered “how-not-to” perspective on navigating the complexities of Alzheimer’s care. 

Sonya’s life was changed forever in May of 2012 when her mother, Dean, was diagnosed with dementia. She shares more about her journey and lessons learned.

Why did you decide to write this book?

When my mother was diagnosed with Alzheimer’s in 2012 there were not a lot of resources available. The terms “dementia” and “Alzheimer’s” were new to me and I didn’t know where to turn. Eventually, I found the Alzheimer’s Association and I now serve on the Board for the Heart of America Chapter. Thanks to them and other great organizations out there, there are many more support groups and other resources available to caregivers today.

As I say in my book, this is a journey that in a million years, I did not expect to take, and I know many other caregivers are in the same place. There are so many raw emotions that come along with caring for a loved one with Alzheimer’s. There’s fear, uncertainty, and anger, alongside moments of love and joy. I thought it was important to tell my story to help others who are on a similar journey. 

What significance does the title have for you?

A few weeks after my mother’s dementia diagnosis was my 47th birthday. I had been keeping in touch with my mom through phone calls and keeping an eye on my mailbox for a birthday card from her.  They came like clockwork every year with the envelope covered in stickers and birthday salutations. But that year was different. The card never came and I felt wronged! 

Why would mom forget my birthday? 
How could mom forget my birthday? 
What was going on with her?

I was completely beside myself. At the time, I didn’t understand the full impact the disease was having on my mom. She called me the day after my birthday about something completely different and didn’t even mention my birthday. When I hung up the phone my heart just broke, and that’s when I realized there was really something wrong. 

Later that year, she was diagnosed with Alzheimer’s, but that didn’t make things any easier for me. I still didn’t understand the gravity of the disease.

What advice do you have for caregivers?

Lesson two in my book is, “Put your oxygen mask on first.” I was not always great about taking care of myself. It’s important to eat well, exercise, and socialize. Doing all of those things while caring for a loved one can be difficult, but it’s so important that you take care of yourself too. 

Also know that what you are doing isn’t right or wrong. You can’t compare yourself to others. It’s your journey and you will make the right decision for your loved one. You have to trust yourself. 

Throughout the book, I share several lessons. These are quick takeaways that I learned through my experience, and I wish I had known sooner. Some additional examples include:

• Lesson 11: Have the discussion before you need to have the discussion 
• Lesson 19: They either remember or they don’t. There’s nothing more to it.
• Lesson 31: Take a photo of your loved one’s hand in yours. You will not regret this photo.

What’s something you didn’t realize you would have to change as a caregiver?

One of the biggest things I didn’t realize early on was that I needed to communicate differently with my mom. 

It’s important to understand that upon a diagnosis of mild cognitive decline, your loved one’s mental capacity to process information has changed and our ability to rationalize and communicate needs to change with them. Rationalization and reason need to step aside, and you will learn the ability to navigate with touch, love, even more empathy than you thought possible.

Additionally, you will learn to just make decisions and move forward. Sure, you will feel internal angst and frustration. This is where you need to gather grace and love for yourself. Always remind yourself, you are doing what is right for your loved one. Stop beating yourself up and trust you are doing the right thing. 

What was most important to you when it came to the care your mom was receiving? 

At first, I really wanted to fix her. Eventually, I realized that wasn’t possible, so I shifted my focus to making sure she was happy and safe.

I know that receiving a diagnosis of mild cognitive decline for your loved one feels like a gut punch. One day everyone is happily living life and then this. Both you and your loved one need time to process this diagnosis. 

For you, overnight you have added a new moniker to your name – Caregiver. Thankfully today, there is support and information available to help you on your journey. You will need to make a mental shift to comprehend that you cannot heal your loved one from dementia.

For me, when my mind switched from fixing my mom to ensuring she was happy and safe, it made all the difference in how I handled caregiving. Whatever life she had left, I wanted her to be happy. If she wanted to eat hamburgers, morning, noon and night – Go for it!  If she wants to wear her bra on the outside of her clothes – Make a new fashion statement!