When We No Longer Remember

Mom fell down a flight of stairs, breaking several bones. It happened earlier this week. It wasn’t so much a misstep as a result of the onset of dementia. For most of her 90+ years, Mom has been this industrious, engaging, and independent woman. But a loss of mental clarity has changed most of this. Being with mom, as the writer Tish Warren Harrison describes it, is like “looking through a camera coming in and out of focus. At times, things blur, go soft and fuzzy. She’s quiet and distant and seems to fade. And then, boom, a moment later, she seems like the mother I once knew.” 

Like many, I have had my preconceived notions about dementia and Alzheimer’s disease. Mom’s condition has forced me to rethink several of them. I am learning to go beyond neurological explanations. As with everything, it’s important to see through a theological lens. This is Scripture’s task—to redescribe the world, redefine reality, and correct common assumptions.

John Swinton, a Scottish pastor, theologian, and professor at Aberdeen, has been a huge help. I have found his book, Dementia: Living In the Memories of God, to be essential reading. Without theological intelligibility, we tend to see dementia in wholly negative terms. And there are damaging things for sure. Dementia literally means to be deprived of mind. It is a series of deficits—cognitive functions are impaired, control of emotions diminishes, and social skills decline. And given the texts back and forth with my sister, who is there with Mom in the hospital, it has demanded all of the energy and wisdom she has.

Sadly, the effects of anesthesia are complicating things. Mom is terrified to be alone, has become more combative with nurses, and is becoming less and less herself. And this, I am finding, is the real danger—we begin to depersonalize one with dementia. If we are not careful, we can fragment and reduce the person to a non-person. We begin to make assumptions like, “The mom I knew is gone” or “She is nothing but a shell.”

Swinton underscores throughout the book that having dementia does not depersonalize someone. My mom still has her feelings, her loves, and her hopes. Though diminished, she still has her mind. To assume she has lost it is to assume I know what she is thinking—or not thinking. The truth is, I am often unclear about what is going on in my own head!

As always, theology forces us to start at a different place—to go beyond the neurological and psychological. Dementia is a relational, social disorder that includes all of us. The tragedy is that we tend to isolate those with dementia—which only accelerates the condition. We talk around them—not to them. We confine them to the care of strangers, where they become more withdrawn, unpredictable, and angry. To use Facebook language, we “Unfriend” them.

The reality is that people with dementia are relational beings with personhood. This does not change with decline. Among the many things Mom and I have in common (Charger fans, appreciation for the right appearance, and hunger for Mexican food) is that we both stand before God, radically dependent upon him for everything. We both are mortal, dealing with the effects of the Fall and the realities of decline. And neither of us writes our stories—we participate in God’s. we are in this together.

Studies suggest dementia is more feared than any other condition, including cancer. Loss of memory is the most feared aspect of dementia according to Swinton. But then, this too must be seen in its context. Many of our memories are more subjective than objective. As one put it, “The nets of memory are all riddled with holes, and most of our days will pass right through them.” 

We remember according to our needs and desires. Our memories change as we rethink and reconstruct. Upon reflection, Heather will occasionally remark—“That’s not how I remember it.” And she is right (I think).  Mom may forget where the kitchen is and what the dishwasher looks like, but there are things I am finding I forget (where I set my reading glasses, the remote, my cell phone). If we equate dementia with losing one’s memory and losing one’s identity, then we are all losing a sense of who we are.

Perhaps the area I am most forced to think through is the nature of time. God has given us the gift of time to sanctify, redeem, and use for his glory. I have often translated this to mean—be productive, seize the moment, and avoid all squandering. To be with a person with dementia requires a reorientation. I sense God is speaking to me about this. My sister has borne the brunt of our mom’s immediate care. She has had to slow down—and so will I. I will need to shift my values from doing for to being with. Any feeling that being with someone with dementia is a waste of time (she won’t remember it) will need to be reordered. In God’s kingdom, it may mean time well spent. Souls were allowed to touch.

In this pivotal book, one of the chapters begins with words from the poet Carl Sandburg: “Life is an onion. You peel it one layer at a time, and sometimes you weep.” Seeing Mom going through this phase of life does bring tears. It’s a layer you can never be completely prepared for. What is most centering is that with each chapter of life, God is always wise, constantly good, ever sovereign, permanently remembering, continually caring, and at all times teaching. There is much I still have to learn.