I have always said that although being the caregiver for my mom (who suffers from Alzheimer's) is hard beyond belief, I wouldn't have it any other way. My kids, Jake, 10, and Reese, 7, have had the opportunity to really know their grandma. They have experienced my mom, their grandma, at every stage of Alzheimer's disease.
Jake is an old soul. He is very intuitive when it comes to people's feelings. He is a caring, loving, and patient boy. He has always loved his grandma and cherished what he called their “special time” together. Sometimes he needed time with her without his precocious little sister clamoring for attention, and my mom understood that.
Mom has always loved to walk. In fact she is still somewhat obsessed with it. She walks every day, in the mornings with a friend and then constantly all day around the ward where she resides. When she lived on her own, she would take Jake for walks on the trail. They would fill his little backpack with water and snacks, and I would sometimes provide a disposable camera for him. He would see his grandma take pictures of flowers and he wanted to do the same thing. This became “their thing” to do.
She would have him spend the night, play trains with him, sing to him, and let him watch his favorite Thomas the Train or Little People videos. She was a calming and safe presence in his life. But what happens when the person you have known starts to change? It is hard enough for an adult, but how about a child? Just like his grandma, Jake has accepted her changes with grace.
There was a day when I was very upset about what was going on with Mom. I told them there would come a day when Grandma wouldn't remember who we are. Reese was so young, three at the time, that she just said, “Okay, Momma.” Jake, on the other hand, stopped playing his game, looked up and said, “Mom, we just have to enjoy each day that we have with her.” My son was right. That was five years ago, and we continue to take each day at a time.
As the years have passed and Mom has changed, both of my kids have accepted every single move and change that has developed. Although Jake sometimes says that he liked it better when we got to visit Grandma in her apartment, he still visits her in the locked down ward. Now, this place can be scary to a child. In fact, my nephew and niece are always very nervous to go visit their grandma when they are in town. It is like nothing one has ever experienced. Imagine going into a locked area filled with strangers. They are all doing something different-- from sleeping, to talking and yelling at things and at people who only exist in their minds. They are people who are stuck in another decade. Some talk and take care of dolls like they are real live babies. Others stare and don't speak, and still others lecture as if they are still teaching. Some try every door to see if they are open, or a few may offer you their walker. This could be overwhelming for anyone, much less a child. This has simply become normal to me and my children.
Despite all the “chaos,” Reese loves to go visit Grandma. She loves to talk to her and often says, “Grandma is funny.” Funny because what Grandma says, doesn't make sense. Reese doesn't care. She just wants to see her grandma, give her a hug and play with the baby dolls that are there. Reese has totally accepted her grandma for exactly who she is at every moment.
Reese, too, has fond memories of her grandma. Reese remembers Mom making tea parties for her. They would dress up in Mom's jewels and sit down to a fancy spread. Reese always would go to my mom's closet and try on every pair of her shoes, scattering them around and finally choosing a pair to wear around the house. Reese also remembers when my mom could no longer read and she would read to her grandma. There she was, a petite five-year-old sitting and reading to her grandma, 70 years old. Roles were reversed, but Reese was so proud of herself that none of that mattered. Some days they would draw pictures together and laugh at their attempts of drawing certain things. Good memories, just as they should be.
Mom understood Reese's passion and energy, just as she understood Jake's more reserved, cautious nature. She relished their snuggles and the sweet little voice whispering secrets in her ear, and she still does. She perks up when the kids come to visit. Although she has long forgotten their names, she remembers their faces and their sense of being. They hug her and talk to her and bring her treats that they know she will share with them. They walk with her and love coming to visit when it is activity time in the morning. They dance with her and make her smile and feel loved.
They have grandparents who go to their lacrosse and soccer games and visit their schools. They have a “Papa” who they visit in Virginia where they have adventures and memories of their own. They have cousins in North Carolina who they love as a brother and sister. The memories and experiences with my mom, their grandma, are much different. And although all of the experiences in their lives help to shape who they are as beings, I believe that the experiences with their grandma, an Alzheimer's victim, have made them much more compassionate, understanding, and accepting individuals.
They have learned to love a person for whom they are at the moment and to accept and love someone unconditionally. They learned that all people are different, but we are all human. We all have feelings and wants and needs. They have learned how having a grandma with Alzheimer's affects their own mother. They know how much I have to do for someone I love and that it is really hard and trying at times. They hug me when I cry, and they understand when I need a self-imposed timeout out to gather myself. Most of all, they see how I love my mom, no matter what.
These two little people have learned more about human compassion in their 10 and seven years then some learn in their entire lives. They bring joy to their grandmother, they bring their trusting souls to their cousins when they too come to visit their grandmother, they bring smiles to the other residents with their bubbly presence, and they bring love, understanding, patience and pride to their dear ole mom. I do my best to teach my children by example-- by how I live my life day in and day out. But what I found out is that I, too, learn from them and their examples of compassion, joy, and acceptance.