My mom has Alzheimer’s. And it’s not easy.
Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong.
I was born when my mom was 37 and my dad was 41. They had already “finished” their family – my sisters were 17, 15 and 13 – but welcomed the surprise. My mom was involved in everything in our little town, from Rotary Club and the school board to attending college while working full time. As the matriarch of the family, everyone in town knows her. The entire family, including Dad, look to her in order to be in the know.
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So we weren’t expecting it when we noticed she was not quite on her game. She was forgetting things. As many tend to do, we attributed it to old age at first. Because I wasn’t seeing her weekly or even monthly and now lived two hours away, I noticed more dramatic changes than my father and sisters did. We realized that mom should see a specialist, and once she did, we learned what we had feared – mom had Alzheimer’s.
For a while, Mom didn’t want anyone to know. She was a well-respected community leader still serving on the school board. As a family, however, we needed support as much as mom did. My sisters and I began researching and reading whatever we could to learn more about the disease; what we should expect, how we should begin planning.
I came across the Alzheimer’s Association’s website and started looking for local meetings that I could attend in order to educate myself and my family. I registered for the Walk to End Alzheimer’s and got my family involved. Mom finally became open to sharing her diagnosis and began “letting go” of some of the things she had always done and accepting help. This was not easy for her to do, but my mom is strong.
I get my strength from her. We aren’t victims of this disease. We are fighters.
Each of us girls has our strong suit when it comes to taking care of our parents. From daily home maintenance like mowing the lawn and keeping track of medications to legal planning, paperwork and research, we all have our role. My dad continues to be my mom’s primary care giver, but as he is not in good health, this wears on him. But he would never complain, because that’s not what he does.
For me, connecting with the Central Ohio Chapter of the Alzheimer’s Association has provided the support and education I need to face this disease. When I attended my first monthly “happy hour” meeting, I met others like me – moms with young children who care for a parent with Alzheimer’s. Two of those women continue to be part of my personal support system. We are all in very different stages now, but when I have a bad day, I can message or text them, and they understand what I am going through like no one else in my life.
One of these women invited me to go to some classes with her that would help me understand what my mom was going through using role play. At first it seemed kind of silly, but boy did I learn a lot about how I was making things worse when I interacted with my mom! Now I try not to correct her, and I try to understand the frustration she must feel when she recognizes that she is forgetting things.
Knowing about what resources are available has helped me in other ways, such as researching financial advice in order to hold onto the childhood property that has been in my family since our grandparents came to America from Czechoslovakia. For me, planning and understanding how to have these difficult conversations with our family as a whole has been vital.
And as for mom? She benefits from talking to others with the disease at awareness meetings. Seeing friends in her community decline due to Alzheimer’s is difficult, but it helps her prepare for the future. Meeting with people who are so driven and determined to defeat this disease gives us hope. Advocates with no personal connection to the disease who speak in local meeting provide assistance and news. Everyone plays an important role.
I’m a doer. And as a woman, the daughter of someone with Alzheimer's and a mother, I know something needs to be done. I don’t back down. I am not embarrassed to ask for help. I’ve developed control so that I don’t allow this disease to make me a victim. I am never a victim… I get that from mom.
About the author: Patti Gilligan, a director of change management at DSW Designer Shoe Warehouse, nominated the Alzheimer's Association as one of seven charities competing to win a $75,000 donation in DSW's Leave Your Mark program.