SAN DIEGO — This is by far the most difficult story I've ever shared.
It's a very public look into my family's private life, but my mom agreed to do it in the hopes of helping others who may be in a similar situation.
My mom, Lucy, was diagnosed with Alzheimer's Disease seven months ago. A neurologist confirmed what I'd suspected for about a year. We originally thought she had normal age-related memory loss, but as she began to forget things more frequently and then started experiencing deep confusion, we knew it was more serious.
I shared a post on social media the day she was diagnosed in April 2019, and the outpouring of support was overwhelming. The kind words of encouragement, support and advice were so appreciated. What struck me most, was the vast number of people who told me they also have a loved one living with the disease, and the many who shared their loved one had died from the disease.
I have started a facebook group called Living with Alzheimer’s - Join me on the Journey for others to join and share stories and encouragement.
There are a lot of unknowns along this journey. For instance, I didn't understand, at first, how you could die from Alzheimer's.
Isn't it just a memory thing? How do you physically die from memory loss? But then I was told that the disease will eventually affect the brain's ability to perform bodily functions, causing the body to shut down.
I still can't imagine that happening to my sweet mom.
I recently reached out to Alzheimer's San Diego for advice and help, at the encouragement of my colleague Carlo Cecchetto. His father died of Alzheimer's Disease, and he knows how important it is for the caregiver to get help.
I learned about the non-profit's amazing network of support-- offering respite care for caregivers, socialization classes for those living with dementia, and so much more.
Words can't express the joy I saw in my mom's face when I took her to a music class at their facility on Convoy Court in Kearny Mesa.
I showed the news story to my mom before it aired. I felt it was important to have her blessing before sharing such personal moments. I can't imagine what it must feel like for her to look at a video of herself in such states of confusion, knowing she's since forgotten about them all.
She watched it and said to me, "If sharing my story can help one person feel less afraid and less alone, then it's worth it."
This is why I'm doing this story. We are not alone. No one can do this alone. It's a long, hard journey, from what I've been told, and my mom and I are only at the beginning. My family and I are still learning. She's lived with us for the past five years since my father died.
In many ways, her memory loss gives her a beautiful childlike wonder. She has a positive spirit and is generally happy, unless she's confused and frustrated.
It's been a bittersweet journey so far. I marvel at my 13-year-old twins, who have so much patience with her. I am so thankful for my supportive husband, who takes over caring for her when I'm at work. We don't know what the future will hold, but I thank each and every one of you who has reached out to me with glimpses of what I may experience, and I invite you to join us on the rest of the journey.
I know I can learn so much from many of you. We can learn from each other.
Join me and others in our Facebook group where people who are interested can share more directly with me and others going through the same struggles.
I look forward to seeing you there if you'd like to share your story. We can do this together.