Dear Candid Caregiver: My heart is breaking! My mom and I have always been close, even shopping together and having lunch quite regularly, so it was devastating when she was diagnosed with early on-set Alzheimer’s at age 53. Mom seems to have a particularly aggressive form of the disease, so just three years down the road she’s now judged to be in the late stage of her disease.
Two years ago, I quit college to move back home and take care of her, which I was glad to do under the circumstances. Many changes have been challenging, of course, particularly six months ago when it became necessary to move her into a memory unit. She has good care, but now she’s begun forgetting my name. When she does remember it, I’m so thrilled that it frightens me because I know that the day is coming when she won’t recognize me at all.
Mom forgetting what she named me makes me feel less myself for some reason, like my identity is somehow erased. How do people adjust to this new pain? – Erased
Dear Erased: I’m deeply sorry! Having your parent forget your name is said by many caregivers to be one of the most painful parts of being a care partner to their parent who is living with dementia. Yet, it’s one of the cruel, nearly predictable realities of some types of dementia, particularly Alzheimer’s.
Even though early on-set Alzheimer’s disease can follow a different pattern than later on-set Alzheimer’s, much of the end result is similar, and losing the ability to remember loved ones by name is part of the process. Knowing, however, doesn’t necessarily make it easier to accept.
How do others do it cope with a parent forgetting their name?
I asked some of my caregiving friends to share their experiences with us because I thought that their input may help you feel less alone in your pain.
Tyler Leightner, a young caregiver like you, told me this:
One day when I came back from school Mom asked me who I was and I didn’t tell her because I was too shocked. In the next few moments, she snapped back and started crying because she knew who I was and said my name. I tried to be strong and just hugged her to console her. Mom was never the same after that moment.
Irene Frances Olson, a former caregiver, and author of a novel about Alzheimer’s caregiving titled Requiem for the Status Quo had this response to her father getting her name wrong:
My father forgot who I was just one month prior to his death – he called me Jim. For me, it wasn’t devastating because he was comfortable with me and our time together was very personal and gratifying; in his eyes, I was a significant, trustworthy person in his life.
Long-time spousal caregiver Donna Brooks had this heart-breaking experience:
My husband forgot who I was and thought I was his ex-wife. We’d been married 25 years so this really hurt! But, a few weeks later, he remembered who I was and even called me by my nickname. It felt so great to have him back, even temporarily.