May 23, 2021
When Your Loved One No Longer Sees You
Losing Your Loved One and Yourself in a Dementia-Filled World.
When you’re caring for a loved one with Alzheimer’s or other dementia, two kinds of “disappearings” occur. First you watch your loved one slowly disappear. Even in the early stages you hear the voice stammer as the mind reaches for words and phrases. The brain struggles to pull up memories as the recognition of faces and names slips.
The second kind of disappearing is a mirror of the first. While you watch the cognitive abilities of your loved one decline, you simultaneously have to experience the trauma of disappearing from them.
Maybe like you, I always had such joy sharing personal triumphs with my Mom — whether it was a good grade or extracurricular trophy or more grown-up wins later on. She was a cheerleader for accomplishment and a loving encourager when I was down — the person who knew me best and loved me anyway.
But as she slowly slipped into dementia, that knowing waned. In later stages of dementia, we often hear caregivers talk about having to constantly remind their loved one who they are. I’m your daughter, your sister, your husband. We’ve been married 45 years. Don’t you remember me?
This disappearance of you from them adds a sorrow and weight to caregiving that we don’t often talk about because we are so focused on them we are not paying close attention to ourselves.
One day while caring for my mother I received a job offer that I was very excited about. The details were in a letter that I presented to her with great pride — just like that teenager bringing home a trophy.
At this point in our journey, my Mom was bedridden, having suffered with dementia for several years. As she read the letter, I watched her smile, and my daughter’s heart jumped for joy as I anticipated my Mom’s equally excited “Congratulations!” But then my Mom stopped smiling. She turned to me and said, “Oh, this isn’t for me, it’s for you.”
In that moment, I felt two pains: My lifelong cheerleader was gone, and, worse, I had just let this woman, who had always loved going to work, think there was a better life waiting for her even though she had not gotten out of bed by herself in three years.
While I am forever grateful that my Mother did recognize me as her daughter until her last night, the parts of me she had known from birth, the woman I had become and was becoming, was no longer fully known. And that brought a deep grief.
Losing a loved one to Alzheimer’s and dementia doesn’t take place in a day. It’s a years-long process of incremental loss. But there is life on the other side of this loss and grief, and the blessed moments remain.
On the night she died, my mother grabbed my arm and told me she loved me. She still knew me as her daughter. Trophies didn’t matter any more.
