Donât ask someone with dementia if they âknow your nameâ or âremember youâ
If I can, I always opt to ditch my name tag in a dementia care environment. I let my friends with dementia decide what my name is: Iâve been Susan, Gwendolyn, and various peoplesâ kids. Iâve been so many identities to my residents, too: a coworker, a boss, a student, a sibling, a friend from home, and more.Â
Donât ask your friend with dementia if they âremember your nameâ â especially if that person is your parent, spouse, or other family member. Itâs quite likely to embarrass them if they canât place you, and, frankly, it doesnât really matter what your name is. What matters is how they feel about you.
Hereâs my absolute favorite story about what I call, âTimeline Confusionâ:
Alicia danced down the hallway, both hands steadily on her walker. She moved her hips from side to side, singing a little song, and smiled at everyone she passed. Her son, Nick, was walking next to her.
Nick was probably one of the best caregivers Iâd ever met. It wasnât just that he visited his mother often, it was how he visited her. He was patient and kindâreally, he just understood dementia care. He got it.
Alicia was what I like to call, âpleasantly confused.â She thought it was a different year than it was, liked to sing and dance, and generally enjoyed her life.
One day, I approached the pair as they walked quietly down the hall. Alicia smiled and nodded at everyone she passed, sometimes whispering a, âHow do you do!â
âHey, Alicia,â I said. âWeâre having a piano player come in to sing and play music for us. Would you like to come listen?â
âAh, yes!â she smiled back. âMy husband is a great singer,â she said, motioning to her son.
Nick smiled and did not correct her. He put his hand gently on her shoulder and said to me, âWeâll be over there soon.â
I saw Nick again a few minutes later while his mom was occupied with some other residents. âNick,â I said. âDoes your mom usually think that youâre her husband?â
Nick said something that Iâll never forget.
âSometimes Iâm me, sometimes Iâm my brother, sometimes Iâm my dad, and sometimes Iâm just a friend. But she always knows that she loves me,â he smiled.
Nick had nailed it. He understood that, because his mom thought it was 1960, she would have trouble placing him on a timeline.
He knew that his mom recognized him and he knew that she loved him. However, because of her dementia, she thought it was a different year. And, in that year, he wouldâve been a teenager.
Using context clues (however mixed up the clues were) Alicia had determined that Nick was her husband: he was the right age, he sure sounded and looked like her husband, and she believed that her son was a young man.
This is the concept that I like to call timeline confusion. Itâs not that your loved one doesnât recognize you, itâs that they canât place you on a timeline.
What matters is how they feel about you. Not your name or your exact identity.
THIS. sometimes ole miss thinks iâm her son, or her husband, or her cousin bill or her friend kathi, and once she called me âmommy.â doesnât matter. she knows iâm someone who cares about her.
when my grandmother developed dementia, she took to calling me âvirginiaâ. she had gone to a time in her mind when long red hair did not mean her metalhead grandson, it meant her eldest sonâs fiancee. she gave me a lot of advice for how to keep my head and my temper with young leo, who could be a handful but was a gem if you didnât let him push you. âi know youâre a firecracker, ginger,â sheâd tell me, âbut donât make a fight out of it. just hear him out and then make your own decision. he respects that.â
i didnât correct her on my gender or the year or my name. i didnât tell her that virginia and leo had been married forty years and were doing fine; i thought that might reassure her, but then, it might just throw her for a loop, so i kept it to myself. i kind of wanted to tell her leo had been an excellent mentor to me and sheâd taught him well, but i figured i could save that for a better opportunity. (as it happened, i didnât get the chance, but i think she knew she did a good job.)
i just understood that she saw me as a young person she wanted to teach and look out for, and maybe a person whose agency she wanted to validate despite society trying to squash it.
so i listened to her advice and thanked her, and told her iâd think on it, and she was happy. and i did think on it, too, and it helped me in my relationship with seebs.
people with dementia are still themselves. theyâre not clear on the details, but they still love and care and have things to teach.
after my momâs traumatic brain injury when she came out of the coma the first phone conversation we had she started telling me about me thinking that I was my cousin Margo and it was 1992.
I just want to say that, like- this really isnât easy. If youâre reading this and youâre feeling bad that you canât do it, thatâs because itâs really fucking hard to look at someone you love and have them not know you. Itâs not your fault.
Also each stage of dementia is terrible and each time things get worse youâll wish youâd appreciated the previous stage more. But the truth is they all suck, and itâs harder for you than for them (which is perhaps the saving grace, on some level, but really incredibly shitty on every other), and if you canât manage to be cheerful and play along every time your loved one doesnât know who you are- thatâs okay too.















