Before my mom, Lina Norma Sebastiani, was diagnosed with Alzheimer's disease in 2013 at age 68, I thought of her as the ultimate caregiver. When my sister Anna and I were kids, mom worked as a nanny and was an amazing seamstress. She could turn a pair of pants into a skirt and make beautiful drapery out of ordinary sheets. All the neighbors would bring their prom dresses and wedding dresses to her for alterations. She used to cook delicious soups and lasagna. My dad died 25 years ago and her life hasn't been easy since then, but she has always been a hard worker. When my sister and I became moms, she helped us take care of our girls, picking them up from the bus stop or babysitting.
Then one day in 2011, Mom called my sister and told her she couldn't remember how to turn on the car. That was the beginning of the signs of this terrible illness. Her decline has been so fast. She can still walk around and talk, but mentally she really struggles. She doesn't know what day or year it is. She forgets what she's doing in the middle of doing it. She doesn't always recognize us, especially at night. She's always in a state of restlessness. I think she knows that something is wrong—she has some memories, but she can't remember one minute to the next so she's always worried about messing things up. It's torture to watch.
Since the diagnosis, our roles have flipped—she used to take care of us; now we take care of her. I wake up in the middle of the night wondering if I left the next day's meds in the safe for the morning caregiver. Sometimes when I'm cleaning out mom's fridge I find things that I threw in the garbage the night before. Thankfully, we have some help from some friends, relatives and even great agencies like the Visiting Angels, but each day is a fight. I worry from the moment I get up. Even if I know the Visiting Angels will be there I have to call to make sure they show up, check to make sure mom has her dentures in her mouth before they put out the garbage, and look all around the house for dirty diapers when I go there after work for my "shift." My sister has the same worries and responsibilities.
My girls are 14 and 11. My sister's daughters are 15, 13, and 11. A lot of kids don't have much interaction with seniors, let alone seniors with Alzheimer's, but our kids all have so much empathy. Still, it's hard for all of us when I'm away from them taking care of my mom. My kids have missed out on a lot of things. Thank God for my sister. When one of us goes on vacation with her family, the other one is here to watch mom.
I have been keeping a diary the last few years. I often write in the middle of the night when I can't sleep. Recently I wrote, "this won't be forever." The truth is, just when I think I can't do it anymore something happens and I realize that I am stronger and tougher than I ever knew. I can give Mom a bath, take her to appointments, give her meds, and even change her diapers, all because I love her. One day I might even miss these times, as crazy and as hard as they are.
Caregiving has been the hardest thing I've ever done and new challenges come every day. I take it one day at a time.
I feel sorry for myself sometimes. But I also feel lucky. There are people who haven't had good parents. My mom has been a wonderful mom to me and my sister. She's still so loving and kind. Even though she has Alzheimer's, when you get up to leave, she'll open the fridge and ask if you need anything. She's a shadow of the person she used to be, but she'll always be a caregiver. It's still in her.
Santina Marshall, from Clarkston, Michigan, won the Landcruisers Caregiving Essay contest. She won a year's subscription to the caregiving service Wellthy.