Recently I attended a party given by a local family whose children had attended school with my children. The adult daughter of that family, a young woman the same age as my daughter, greeted us at the door. She resembles her mother, and for a brief moment I was confused. The daughter is now about the same age as her mother had been when we'd first met years ago, and I stumbled just a bit before I greeted the daughter by her correct name.
In that moment of uncertainty, I experienced just a taste of the kind of confusion my mother has to deal with every day. I believe (please, Lord) that my confusion at the party was a normal side effect of being old enough to have known two generations of a family as they each progressed from childhood to adulthood. For people with dementia, this type of normal, momentary mental glitch becomes magnified many times over.
For the past seven years my mother has struggled to remember whether I am her daughter or her granddaughter. Before I had made that treacherous emotional transition from daughter to caregiver, I was devastated by this kind of confusion. Just last evening she said to me, "Now, who is John married to?" (John is my husband of 37 years). Mom had her notebook in her lap and her pen poised to write down my reply.
I always say that I respond "properly" to Mom only about ten percent of the time, and this was one of those less-likely-to-happen responses. I paused a moment, prayed to respond in a way that would protect her dignity, then replied, "Well let's see, it's John and Linda, and Mindy and Brian. Linda is your daughter, and that's me." She was writing furiously to try to keep up as I spoke. I leaned over and patted her hand. I said, "That generational stuff is confusing when you get just a little bit of dementia, isn't it?"
She smiled and nodded, then, consulting her notes, repeated the information back to me, "So, you are Linda, and you're married to John, right?"
I said, "Yup, and we looovvvve each other!" She giggled at my silliness, and all was well.
This is very different from the exchanges that took place early in our caregiver/patient relationship. Early on I would remonstrate with Mom for not knowing me. I was likely to say things such as this: "How many children do you have, Mother? I'm your only child and who the heck else would be taking care of you?" And of course just beneath such a rude response were much deeper and hurt filled questions which went unspoken but for a long time fueled my actions and demeanor toward my mom: "How could you possibly forget your only child? Why don't you express gratitude to me for providing you care, but just take it as your due? Why do you often remember casual acquaintances better than you remember me? How could you betray the relationship we've had by failing to recognize who I am?"
I've come to understand that Mom's confusion about who I am runs deeper than with other people because our relationship has changed so much. We've undergone a role reversal. She is no longer able to cook, buy presents, plan family gatherings, or any of a myriad of other acts of service she performed for me as my mother; thus many of her familiar ways of relating to me have evaporated. Of course this is confusing for her. She often thinks I must be her granddaughter, Mindy, because she recognizes me as a beloved family member, but the daughter she knew did not give her instructions about when it is time to bathe or take medication.
I really don't think we give dementia patients enough credit for the reasoning processes they utilize to make sense of an environment that is often puzzling for them. Mom's reasoning probably goes something like this, "I recognize this girl as being dear to me, and I'm sure she is a family member, but this isn't how Linda acts toward me, so it must not be Linda. Maybe it is Linda's daughter, Mindy, all grown up and taking care of me now."
Caregivers must learn to respond to hurtful behaviors from a clinical rather than an emotional perspective. It is a difficult transition, made easier by the recognition that although the rules of the relationship change, love remains. I am blessed just now because my mom still recognizes exactly who I am when I give her a hug and say, "I love you, Mama."
There will likely come a time when my mother no longer knows me at all, but a hospice nurse who cares for dementia patients once told me, "The ability to love and to receive love remains until the end of life." As we continue this Alzheimer journey together, I pray for the strength to act toward Mom in love and to dependably and graciously receive the love she's still able to express.
