My grandfather is living with Alzheimer’s disease. My stepfather, Morley, serves as a paid caregiver and companion to a man with Alzheimer’s disease, Roy. Today, I am walking for three hours as part of the Alzheimer’s Association Longest Day™ in honor of these men — Poppy, Morley and Roy — and also my grandmother, Granny Bea, who is Poppy’s caregiver.
As I got up bright and early this morning (just before the crack of dawn) to start walking at sunrise, these men were not far from my mind. What were they doing? And what was my grandmother doing?
See, Granny Bea is Poppy’s wife of more than 70 years. And in all those years, Alzheimer’s is the only thing that has ever separated them. When my grandfather’s needs became too much for my grandmother to handle alone a few years back, he moved to a facility. But that has not stopped her from remaining his primary caregiver.
Granny Bea wakes up early so she can be there when Poppy awakens. So she, too, needs to ‘pre-empt’ the sunrise. During the very early hours, she tends to her own needs and then takes the short bus ride to his facility to be there when his day begins. By the time she arrives at to his place, she has already showered, eaten, checked her schedule and his, and arranged for her transportation. That’s when most of us would take a break. But not Granny Bea.
She rides the shuttle carrying things that might make Poppy’s day a little more familiar. And when I say “familiar,” I mean familiar to her, because not much is familiar to him anymore. Poppy has the most decorated room of anyone in the facility — full of family pictures, just as their home together used to be. When my grandmother arrives, Poppy is usually still sleeping. So she collects his dirty laundry and separates it for the laundry service. When he awakens, she will make sure he is dressed in something clean and respectable, tend to his hygiene and get him to breakfast.
Some afternoons they will dance. She will hold him close (and sometimes hold him up) while music from the 1920s plays on the radio. Granny Bea says that dance steps are something Poppy never forgets. He may not know her name or even remember who she is, but when they dance, it’s like Alzheimer’s disease never entered their lives.
When Poppy is tired, Granny Bea will dance with other residents. Not to the same slow dances she saves for Poppy—but sometimes she will Charleston or Twist or dance Hip Hop —anything to bring a smile to the faces of Poppy’s neighbors.
The rest of the day goes much the same. She maintains his personal dignity and her sense of partnership, love and family. Then she goes back to her apartment less than a mile in distance but almost a lifetime away.
Walking these three hours will be a challenge for me, as I have not tended to my own physical fitness much in the past nine years of bearing and raising children, but I know the endurance I have shown this morning is nothing compared to the dedication and commitment shown by Granny Bea and Poppy in their fight against Alzheimer’s. I hope we can end this disease before my children have to live with it or through it. And I hope that if I am called into service as a primary caregiver for someone living with this disease, I will also be strong enough to go the distance like my grandmother.
Julie Sipchen works as a product manager in Safety Services at the Alzheimer’s Association. She lives with her husband and three daughters in Chicago, where they are active in their community and in dance, softball, skating and T-ball.