By Carrie Smith
Earlier this month I found myself standing in a high school gym prepared to talk about Alzheimer’s disease during halftime of a high school girls’ varsity basketball game. It was Alzheimer’s Awareness Night, the first they’ve had, and I was there to show support and to briefly talk about what Alzheimer’s is, what the Alzheimer’s Association does and how people can get involved.
Standing on the sidelines, I listened as the rubber of shoes and the basketball squeaked across the court. I saw stands full of people wearing purple, and felt overwhelmed and extremely honored to be there. I felt overwhelmed because clearly this community has been deeply impacted by Alzheimer’s disease. I felt honored because I got to experience something that I don’t often get to see in my job as a care consultant at the Alzheimer’s Association.
I’ll tell you why.
About two years ago, I began working with Lori and her family.
Alzheimer’s is a hard diagnosis to receive emotionally (if you are reading this blog post, I can probably safely assume you know this is a total understatement). Stigma revolves around it, and there is no cure.
When we think of Alzheimer’s disease, we often think it’s a disease of those who are much older. And for a lot of folks, that’s true.
In 2014, there were 5 million people in the United States living with Alzheimer’s disease. Your risk of developing Alzheimer’s increases as you age and most people with Alzheimer’s are over 65.
However, about 5% were diagnosed before 65. Individuals who are mothers or fathers to young children, who have partners, who have careers, who have active lives, and who have the reasonable assumption that they won’t deal with Alzheimer’s until much later in life. That 5% is about 200,000 individuals—including Lori.
When I became acquainted with Lori, she was struggling with her diagnosis and didn’t understand what was happening to her. She felt angry, frustrated, confused and she was scared.
Her sister and primary caregiver, Carol, lived across the country in Massachusetts and was juggling long distance caregiving with a full time job, marriage, parenting her own kids and the stress of being 2,500 miles away from her sister who had just received an unbelievable diagnosis.
I had a few phone consultations with Carol about increasing safety concerns; brainstorming ways to ease Lori’s stress and anxiety; ways to enhance her quality of life and provide dignity; and gave her information on programs and supports in the community.
I tried to provide emotional support and tangible resources to help them, but the reality was that Lori was progressing fast. After seeing her youngest daughter off to her freshman year of college, Carol moved to Washington to care for Lori fulltime.
One year later, she had to move Lori into a memory care community because she had progressed so rapidly. At 54 years old Lori needed 24/7 care.
You may be wondering what this has to do with a basketball game. Well I’ll tell you.
Cassie, Lori’s 18-year-old daughter, contacted me to speak at their Alzheimer’s Awareness Night basketball game. Despite being terrified of public speaking, I agreed. She told me that in the past few years she’s been very open at school about her experience with her mom, and she wants to do all she can to raise awareness about Alzheimer’s.
Though Cassie’s mom was diagnosed two years ago, Lori had symptoms about 3-4 years before that. Cassie, as an 8th grader, took on the caregiving role, making sure food was on their table, communicating with her teachers to make sure she was where she needed to be and helping to keep the peace in their family.
Being a teenager when your parent is diagnosed…it forces you to grow up fast.
Our conversation wasn’t long, but I was struck with three things:
- one, she sounded extremely mature and awesome
- two, she is dedicated to ending Alzheimer’s in its tracks
- and three, I admire her greatly.
Because I had been a small part of things from very soon after Lori’s diagnosis, standing in that gymnasium, I felt that I had come full circle in some way. I got to meet Carol and her husband, Jon, and Cassie for the first time in person. This meant a lot to me.
Anyone who loves someone with Alzheimer’s knows how life is a roller coaster, and often you feel like you’re barely hanging on. No matter what age you are, whether you’re the person who has Alzheimer’s, the parent, the child, the partner…it impacts you hugely.
You must learn to exist in a world of ambiguity and loss. The small victories often feel like a consolation prize in comparison to all you’re losing. You must be creative, patient and flexible all while navigating profound grief.
But you must also have hope.
And you must work, like Cassie and Carol, like me and my family, like my colleagues at the Alzheimer’s Association and our many community partners, toward a world without Alzheimer’s. We have done a lot, and we still have a lot to do.
Carrie Smith, MSW, LSWAIC is a Care Consultant at the Western & Central Washington Chapter of the Alzheimer’s Association. The Connections Care Consultation program provides individualized guidance to families and individuals to address immediate needs and planning for the future, with ongoing support throughout the course of the disease. For more information visit our website or call our 24/7 Helpline at 1-800-272-3900.