Testimony edited with permission of Ms Mansi Sharma, caregiver of her Grandpa with the support of her family.
A Family Caregiver sharing her experience of the care of her Grand-pa suffering from Alzheimer's Disease :
"After tossing and turning almost ten times in his bed, he wakes up with a start. With a kind of urgency that none of us understand. He looks around and the same look that we dread, appears on his face again. Confused, he asks where he is. We tell him, he doesn’t register. He asks again, and we repeat the same answer. Over and over until he gives up and gets back to his bed. He doesn’t know what we’re talking about. He tries but he can not understand. He feels helpless and we know it but we feel helpless too. We don’t know what to do. He looks at us with fear that reflects in our eyes too. Soon, the confusion and fear in his eyes are replaced by sadness. A sadness that is so vast that it engulfs all of us along. He tells us to take care of him, we agree. He tells us not to leave him alone, we promise. He says he thinks he’s going crazy and we shake our heads and tell him everything’s going to be okay. We tell him that it’s probably the morning dizziness. A cup of tea will make it all right. We repeat this over and over again, more to believe it ourselves than to reassure him.
He agrees, and tries to stand up but the legs hurt. He says he thinks its time after all and the blood surges in our veins. We become so angry, at whom, we don’t know. We raise our voices and tell him that it’s nothing; that this too shall pass; that he shouldn’t worry. With nothing left to do, he nods and we hate ourselves for shouting at him. He takes the cup in his hands and in between the small sips, he asks who we are. He asks our names, our relation with him, about the place he lives. Then as the tea starts its journey down, he begins to recollect. He laughs at himself, wondering how in the world could he ask such questions. We look at him and smile, and for an instant believe that it was indeed the tea that he really needed.
As the day moves on, he wanders around the place, setting and resetting the things. Arranges and rearranges everything around. He tells us he wants his specs beside the telephone. After a few minutes he tells us to keep it on the refrigerator. After taking another round of the house, he comes to find his specs near the telephone but can’t. We tell him it’s on the refrigerator and he gets angry. We tell him he told us to and he doesn’t believe. He goes away and tells us not to talk to him.
After an hour he begins to sing, we join in, click pictures with him, go for a walk. We tease him and he teases us back. And we feel all is right in the world. He retreats to his room to take some rest, we begin to switch off the lights but he refuses, he’s scared. We switch on a dim light and he lies down on the bed. After a while, he wakes up with a start we rush to him and he points at the ceiling and asks us to get rid of the cat there. We tell him it’s not there. He stares at the ceiling and then at us. It’s there, its right there. We tell him we’ll get rid of it. He nods and lies down again. He wakes up at dinner time asks where he is, what’s happening. We tell him, he believes. We eat our dinner together.
Afterwards, we talk about the old times, about the stories we’d grown up hearing from him; about his childhood, his journey from village to the city, his struggles, his achievements, we talk about his brothers and sisters, his wife and his friends, his sons and daughters and grandsons and grand daughters and he joins in. He laughs when he remembers the time well spent. And we laugh along with him as he narrates the stories of his childhood we had grown up listening to. He smiles and says he doesn’t know what will happen when he will grow old if he’d already started forgetting things now when he’s young. We all laugh together and say our goodbyes and lie down in our respective beds. And stay awake. For a long, long time. We don’t know what to do. We don’t know how he feels but we know it hurts. We don’t know how to help him. We don’t know how to help ourselves. We don’t know if we’re doing the right thing. We don’t know what is going to happen. And we doze off to sleep with more locks than keys. Alzheimer's. We hate the word."