A friend who is also a caregiver recently confided in me that one of the hardest parts of her job is not knowing who will greet her when she gets up in the morning. Will it be the confident, efficient, take-charge man she has known for half a century, or will it be the man who is struggling with a life-threatening illness, the one whose mind is fogged by pain and medications, the one who can’t remember how to tie his shoes?
“Linda, sometimes he will be fine for weeks on end and then one day he’s out of it. Some days he changes from hour to hour. I never know when we start a conversation which one I’m talking to, and it’s really stressful.”
I listened and nodded. I understood. The slide into dementia isn’t a steady descent into forgetfulness but rather a two-steps-forward-and-one-step-back journey with detours and switch backs along the way. Some days Dad knew exactly where to find a copy of every tax return he ever filed, and the next day or the next hour he didn’t remember how to fill out a check. Sometimes Mom could set the table perfectly and others she couldn’t figure out how many forks were needed for four people. As my friend said, it’s stressful and can cause all kinds of guilt and anxiety if the caregiver reacts to one personality when the other is actually present.
As hard as these identity shifts are on the caregiver, I wonder what the situation looks like from the other side of the relationship. Dad seemed to recognize most people up until the end, but Mom’s grasp on who was who was more tentative. She often forgot names even when she recognized faces, and she covered her lapses with a giggle, a light-hearted Now who are you, and a tone of voice that said I’m just kidding. As she got worse, she knew who Linda was, but she didn’t always know that I was Linda.
“I appreciate you fixing my hair for me. Linda usually does it, but she’s just so busy.”
When she moved into assisted living, she called all the blond staff members Linda. I guess she was looking for a younger, cuter, less gray version of me. As unsettling as it is for a caregiver not to know which version of their loved one will appear, it must be terrifying to have someone you don’t recognize change your clothes or give you a bath.
I remember hearing a story about Ronald Reagan when he was in the final stages of Alzheimer’s. After a visit from his son, he said this to one of the staff members:
“I don’t know who that man is, but he always gives me a hug.”
Caregiving is hard. There is sorrow and fear and frustration, and sometimes neither of you knows who is who. But in the end, there is love and there are hugs.