Caregiving Pain: What's in a Name?

When dementia erases your identity from your parent’s memory

Question:

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

Answer:

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.

No matter how much it’s hurting you for your mom to forget your name, it’s hurting her more.

Connie Assiff, Senior Outreach Coordinator in Huston, Texas, and Alzheimer’s advocate extraordinaire told me this story:

I was named after my GrandMom who was the only mom I had. After she developed Alzheimer’s and vascular dementia I spent 13 year as her caregiver. She often thought I was the maid or professional caregiver that the family paid to care for her.

One time, when she was in the emergency room, I was sitting with her trying to comfort her. Strangers were all around, trying to take her blood pressure, checking vitals, etc. The ER staff wanted to restrain her, since she was combative, and trying to hit them because she couldn't understand what they were doing, where she was, or why she was there.

I was singing to her, holding her hands, trying to distract her. Then she looked at me right in my eyes and yelled out my name three times. I was so shocked that tears immediately began streaming down my face. I was surprised at my own reaction. It was definitely a moment – a happy one – since she hadn't said my name for years!

Vicki Tapia, author of Somebody Stole My Iron and a co-founder of AlzAuthors had this story for me:

I vividly remember the first time Mom didn’t recognize me. It was on Christmas Day when she looked at me and asked, “Who are you?” When I visited a few days later, she absolutely knew me. And so it went, being recognized one day and not the next. I simply went with the flow and introduced myself as needed.

Erased, you come across as a sensitive, informed caregiver, but I want to reinforce what I believe you probably already know. No matter how much it’s hurting you for your mom to forget your name, it’s hurting her more. It might be instinctive to say, “Don’t you remember, Mom?” but that will only hurt her. If she could remember, she would.

The caregivers who provided their stories have learned that all they can do is move forward. Knowing that this is how the disease progresses probably helps you, but accepting that truth is harder. Yet acceptance of the changes in someone we love who is living with dementia can help us become more tuned into their needs. Acceptance also helps relieve our own emotional pain.

Best wishes, my friend. You are a wonderful caregiver so keep on being you.

See more helpful articles:

Moments of Clarity: Why Glimpses Through Dementia's Fog Can Surprise Us

How To Stay Positive While Caregiving

Why Language Matter with Dementia

10 Things That People Living With Dementia Wish Their Caregivers Knew

Caregiving Rewards Can Outlast Challenges