My 80-year-old mother has Alzheimer’s, a brain disease that causes a slow decline in memory, thinking and reasoning skills. We started noticing early signs of dementia in her about six years ago. It has not been an easy journey for our family, and it has been different for all of us. This is my perspective on how the changes affected my mom and the people around her that love her.
There is a sign by the door of my mom’s room with a list of things to ask her about: her husband and three daughters, her 13 grandchildren, her love of ice cream, her travels around the world, and her Michigan roots. The frame holds several pictures of her doing her favorite things: she is beaming with my dad, eating at a restaurant; she is traveling, bundled in a huge coat and hat, standing on top of the Great Wall of China; she is grinning with her daughters, on a carefree trip to the wine country; she is with her family, standing in the middle of the crowd of her children and grandchildren.
Through the door, there’s a little wardrobe with her clothes and shoes on the left. On the right, a heavy door opens to a bathroom with a large walk-in shower, equipped with handrails and plenty of room for an attendant to help her; a sink and cabinet with her toiletries neatly arranged; and a toilet with a bright red seat and an emergency pull-cord nearby.
Around the corner, her little twin bed hugs the wall, a quilt from home covering it. A purple fleece throw with knotted fringe that we made together waits folded on the end of the bed for chilly days. There’s a wing back chair from home, and a round table next to it. The table holds a vase of fresh flowers, her Bible and devotional book, and a few tracts she lays out just in case someone is interested. There’s a lamp behind the chair for reading, decorated with several beaded necklaces that she made with visitors who came with a craft to do. On the table, my dad leaves notes for her with reminders about upcoming visits from friends and family, hair and nail appointments, and special outings. He also writes things down on a paper calendar, giving her a sense of the days and months.
There are some baby dolls that she likes to dress now and then, and a stack of photo albums my sisters and I sent her, plus a few from home. She has books, games and crafts stacked on a shelf, more for decoration than activity. There’s a little radio on a table by her bed, beside pictures of her with my dad at their 50th wedding anniversary party. It’s cozy and homey enough.
Outside her room and down the hall, there is a large living and dining area in the center of the building. Overstuffed chairs and couches face a large stone fireplace with a glittering, simulated fire. A TV hangs over the mantle. In the evenings, there is usually an old TV show–The Dick Van Dyke Show is a favorite–or a G-rated movie. Meals are served family style on a very regular schedule. My mom seems to like the food, and we can eat with her if we let the cook know ahead to make us a plate.
Beyond the dining room is a game room that doubles as a hair salon. Once a week, someone comes to style the residents’ hair. My mom has had her hair “done” weekly for as long as I can remember, so continuing her routine here makes her feel more at home. We like to work puzzles or play dominoes at the table; my mom is happy to let us take her turn for her. My dad brings a travel DVD player some evenings and they watch their own movie together there in the corner.
It’s a new life for all of us. When I go to visit, sometimes it takes her a minute to place me, but she always knows who I am. When the kids or my husband go too, she knows she knows them, but can’t always find a name. A few times over the past year, she has not connected with my husband; we weren’t sure she knew who he was. Last Mother’s Day, we went to see her, bringing ice cream and a cyclamen plant, like the one she always had one on our kitchen table. When we walked in, she stood up and exclaimed, “Steve! I haven’t seen you in so long! It’s so good to see you!” A Mother’s Day gift to me–a glimpse or my mother’s old self.
Over the last 18 months, we planned our daughter’s wedding at our cabin. It was an event that my mom seemed to be able to remember, asking about it when we saw her. She was excited about our wedding-dress shopping trip in Denver and the shower pictures we showed her. I worried, though, that she would not be able to attend the wedding.
My dad takes her to church and lunch every Sunday, and to a meal or ice cream other times during the week. She enjoys getting out and even meeting with old friends occasionally, but big trips aren’t realistic anymore. A long, bumpy shuttle ride, crowds of unfamiliar people, and the loud music and dancing would be disorienting and exhausting.
My dad decided to bring her. He didn’t want her to miss this special family event. I was happy, but nervous. If she did not do well, it would ruin the day for my dad. When they arrived, she looked uncertain and confused. I only had time to give her a rushed hug before the ceremony started. When I talked with her again after the ceremony, she had brightened up. She was remembering some old friends, and enjoying seeing her family all together. She was dancing and eating cake. She was really there.
These little windows into the person we love and miss open up once in a while. The little pockets of clarity that give us a bit of mom back are called by moments of joy by people who work with people affected by Alzheimer’s. We try to trigger those moments by reminiscing with her and showing her pictures. My dad noticed that when she’s around people who love her, her memory and engagement improves. It’s unpredictable, but when the window opens, it is a shimmer of joy in a bleak landscape.
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