“‘There’s good news and there’s bad news,’ my dad told me. ‘The good news is that they found out what’s wrong with Mom; it’s called semantic dementia. The bad news is that it’s not going to get any better.’
I will never forget the moment my dad delivered the news of my mom’s diagnosis. It was the evening of March 7, 2012. He had just returned from UCLA medical center and I’d been anxious to head over to their house and see if UCLA had been able to provide any insight for us. After more than two years of troubling behavior and memory issues with my mom, and more than half a dozen doctors assuring us that there was nothing wrong with her (or dismissing it as anxiety and depression), we finally had concrete answers. Dad’s voice caught in his throat and tears welled in his eyes, which shifted down to the floor, as he said the word we most feared: dementia.
It wasn’t the news we were hoping for, but it explained so many things: the moodiness and depression, the obsessive behaviors she was suddenly exhibiting, the forgetting of words for things, the failure to recognize faces of people she’d known for over 20 years when bumping into them at the grocery store. In the weeks that followed her diagnosis, I learned everything I could about semantic dementia and I knew without a doubt this was what was ailing my mom, but accepting it was difficult. She was only 50 years old; wasn’t dementia for old people?
The next 5 ½ years were some of the most heartbreaking of my life. It was devastating to watch my mom struggle, to slowly lose her abilities and all the little parts of herself. It was heart wrenching to see my dad lose his sweetheart, the love of his life. They had been next-door neighbors and high school sweethearts; watching her slip away was beyond devastating. As her disease progressed, she gradually forgot everyone around her and every piece of herself. She lost her ability to communicate, her ability to read and write, her ability to use the bathroom and groom herself, and eventually, her ability to walk and swallow.
Caring for a person with this disease requires round-the-clock care. Most patients end up living out the remainder of their lives in a memory care facility, but my dad was determined he was going to keep her home where she was comfortable. This meant a lot of hard work and sacrifice. It meant sleepless nights for my dad while Mom was up roaming, followed by early mornings and a hard day of work in construction. It meant being creative and keeping on our toes to prevent Mom from getting hurt. It meant stepping up as a family to make sure not only Mom was well, but my dad, too. My siblings and I took turns spending some nights with Mom so Dad could get a caregiving break and go on trips with his siblings. I tried to ease some of the burden by helping him with her care; interviewing and coordinating schedule with caregivers, taking shifts caring for Mom, bathing her, etc. Caring for my mom during this time stretched me in ways I’d never imagined having to stretch. There were moments of pain so great I didn’t know how much longer I could hang on.
But with the pain, there also came beauty. It was in our darkest moments of sorrow that our family learned to come together and lean on each other. Friends from church and neighbors stepped in to help supervise my mom while my dad worked. People in the community kept watchful eyes on Mom when she was out and about. As a family, we had to learn to laugh and not take everything so seriously. We learned to appreciate every moment together. We learn compassion and how to serve and love unconditionally. We witnessed my Dad’s complete and utter love and devotion for our Mom as he made countless sacrifices to keep her at home. Theirs was a beautiful love story that has touched the lives of everyone who knew them.
In Mom’s final days and hours of life, we rallied together once more; during the last week, I never left her side. I slept in my rocking chair that I’d moved next to her bed, while my dad slept on an air mattress beside her hospital bed. Other family members, including my siblings, found empty beds to sleep in while all of my mom’s grandchildren camped in the living room. My mom eventually slipped into a coma and for those last few days, we remained vigilant at her side. We laughed, we cried, we shared stories and memories of Mom and we loved on her as the disease claimed the little bit of life she had left. For two weeks afterwards, our family continued to stay by each other’s side, sleeping at Dad’s house and spending our days together. We leaned on one another and found strength and comfort in being together.
Dementia has altered the course of my life; I will never be the same person I was before this journey began, but I’m not sure I’d want to be that other person, either. With adversity, we have the opportunity to grow, to make lemonade out of the lemons. I’d like to think I am stronger today because of what I’ve been through. I would give anything to have my mom back, but I can’t change what is. I can only try to live my life in a way that would make my mom proud. I honor my mom’s memory everyday in my family and in the work I do with The DEANA Foundation, a non-profit I started and named after her. I have realized how precious life is; we never know when our time here is up and when we are gone, we leave behind memories with the people we love. I try to spend every day making memories, never letting opportunities pass by, and finding joy in the journey.”
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