When I see all the beautiful colors that adorn the Promise Gardens and other décor at Walks to End Alzheimer's across the nation, I am reminded of the beauty of the individuals in my life who lived with Alzheimer’s disease. I recall the day I received the news of Momma’s diagnosis. It was filled with sadness and the heavy realization that life had suddenly changed. The same tightness in my stomach returned when my brother was diagnosed with Early Onset Alzheimer’s. Having watched my aunt walk this journey, I knew that this disease was merciless, lacking compassion for its victims, no matter how loving and kind they had been.
After hearing the news, I took a moment to gather my thoughts and began planning for a new future. This meant more visits home and more time dedicated to conversation. The next ten years would include miles of air travel and road trips filled with tears, laughter, reflection, and a growing database of precious moments.
Alzheimer's is a disease that affects millions, attacking the mind and gradually erasing memories and moments that have taken years to create. As I watched Momma’s health decline, I focused on the special moments rather than the sadness. We would talk for hours, and she would share stories about her childhood and the trends of that era. She smiled as she recounted the excitement in the house when family members and neighbors gathered to listen to a boxing match on the radio. Everyone would sit around the large wooden box that encased the equipment, waiting for the sound of the bell to begin round one. She shared how they mimicked the boxers, moving their shoulders back and forth, extending their arms with fists balled, imagining each punch.
She also told me about her favorite childhood book, “Penny and the Promise.” We only talked about Penny being the little girl, and when the conversation shifted, I learned to follow her lead and not press the issue if she didn’t remember what happened next. This was my way of showing compassion and 'packing my patience.'
During these brief conversations, there were times I wanted to hear more, but I knew it wouldn’t benefit either of us. Pushing for more could lead to frustration and a potential shutdown of the conversation. I learned that sitting quietly with an Alzheimer’s patient gives them time to recall and share information. I call these moments of healthy silence, where we show kindness and empathy to our loved ones. It also reflects one of Alzheimer’s for All's key principles: Courageous Compassion—moments where we focus on the patient and provide them with our full attention and care.
Times spent with my older brother Greg were a bit more humorous. One of my favorite moments before his diagnosis was a conversation about childhood diseases. I’m unsure how it started, but one day, we discussed our experiences with chickenpox and mumps. Greg joked about how our grandmother, Momma Mary, tied a towel around my neck to hold my jaw in place when I had the mumps. We laughed, and I said, “So my jaw was out of place?” Greg replied, “You know what I mean. She tied it over your head and under your chin.” It’s 2024, and I still don’t remember having them. We laughed some more, and he said, “You probably don’t because you were too little.” These are the moments I will always cherish and miss the most.
After Greg’s diagnosis and as his health began to decline, he retained his healthy sense of humor for as long as he could. Our trips to Starbucks were filled with reminiscing and joking, and those were some of the best times with my big brother. He enjoyed every Strawberry Refresher, rarely making it home with more than a few remnants of crushed ice and a smashed strawberry tucked in the corner of the cup.
A critical lesson I learned during caregiving was the need for sacrifice. Being a caregiver requires you to make sacrifices that fit your situation. Evaluating changes in your personal life is important, but the patient’s care must be a priority. This doesn’t mean neglecting yourself or avoiding taking time for yourself, but it may mean rescheduling immediate goals for a later time. For me, it meant packing up my house and moving home to help care for Momma and eventually Greg. Everyone’s situation is unique, so we must respond in a manner that works for our home lives.
When I decided to relocate, I likened this change to the sun setting and the dawn of a new day. My environment would be different, and I had to adjust to living where I had only lived as a teenager. This mindset shift caused me to pay more attention to the smaller things happening in my world. I was determined to use the one-on-one time to create safe spaces for conversations with Momma and Greg, gathering more of the rich history that could soon be gone forever. Yet another lesson learned: allow them to talk and repeat things as many times as they like. You will appreciate those memories later.
Before Alzheimer’s, getting up early (before 6 AM) for coffee with Momma was challenging, but my new lifestyle welcomed these changes. Momma looked forward to watching her favorite anchors as she sipped her freshly brewed coffee, only to receive a welcome interruption from Greg, who always greeted us with early morning laughter. As each day passed, I began recalling special moments from previous visits. Whether it was Greg telling me I would regret sleeping in and miss breakfast or him pretending the coffee pot was empty, thinking about those times makes me smile inside and out.
Coping with Alzheimer’s is challenging, but you can help your loved ones find comfort by talking about special events from the past or showing them old photos. Both approaches serve as great conversation starters. They will encourage you when the sun begins to set, and you are feeling overwhelmed. As the dawn of a new day approaches, you will find the strength to rise and prepare for the next round of adventures that a day with Alzheimer’s brings your way. Straighten your shoulders and put a smile on your face because the sun will shine again.
Because every month is a great month for Alzheimer’s Awareness!
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