What Do They Remember?

(Time Period: About two years after Mom moved into memory care.)

Avoiding the Word

When Mom first showed signs of a failing memory, I found myself using a certain word and asking the same thing repeatedly. That single-worded question was this: “Remember?”

That’s your niece, Gloria, your sister Rose’s daughter. Remember?

That’s when you and Dad took a trip to Hawaii. Remember?

Here’s a picture of your first granddaughter when she was little. Her name is Brigid. Remember?

It goes against logic to keep asking: “Do you remember?” when someone is losing her memory. It’s part denial (Of course she’ll remember that) and part wishful thinking (If I remind her enough she’ll remember). There would be no reminding Mom back to cognitive health. At any particular time, she might have remembered or not. As is common when people have dementia, Mom learned to play along, to act as if she remembered.

Once you realize that your loved one does not necessarily remember what you’re talking about, you also understand that the awareness of not remembering is anxiety-producing. You learn that constantly asking if she remembers does not help the situation.

Still, in those earlier days, even after the acceptance that her memory was failing, I had to catch myself and the word sometimes slipped out. Eventually I removed it from my vocabulary and instead turned the questions into statements:

The cookies we make at Christmas are our favorites.

What a great picture of you and Dad in Hawaii. Your dress is so pretty. You bought it for the trip.

These were reminders without the quizzical do-you-remember approach.

Being in the present moment with Mom was my main focus and our conversations were not just about memories, yet there were many times when she liked to hear stories about her life. She was comforted by a happy memory and seemed relieved to be on the receiving end of a conversation and not to have to answer questions. This is what makes caring for someone with dementia more of an art than a formula. I learned to remind without making it obvious reminding. To tell a story as if it were new and to relay it with lightness.

What’s the Right Amount?

There were days Mom was interested in seeing pictures of her children and grandchildren or of herself when she was younger. I’d pick up the frame of the grainy yet beautiful black and white photograph that her sister Lena had taken with a box camera on the day she received her master’s degree from Columbia.

That’s when you graduated, Mom. Your sister Lena took that photograph. She was so proud of you.

Grace receiving her master’s degree

When it came to pictures of my father, I wondered whether it brought her joy to see his face or the pain of separation. My sister Lori is a therapist and bereavement counselor with over 30 years of experience in the hospice field. She referenced a general guideline for people with dementia: Tell them once. That is, when informing those with dementia that a loved one has died, you tell them once rather than repeating it with a big explanation. This is to avoid their having to relive the loss constantly.

When my father died, my mother had been in the earlier stages of dementia and it was prior to a definitive Alzheimer’s diagnosis. She was able to attend the wake and memorial service that we had in Arizona (before his actual funeral in New York). Lori sat with Mom and gently invited her to participate in selecting the photographs to display and the hymns to sing. This was in order to bring her along in the process of comprehending things emotionally, if not fully cognitively.

About two years later while sitting with Mom in her room at the care home, I wondered what went through her mind when she caught a glimpse of Dad in a photograph. I tried to assess in the moment: is she engaged or disinterested? Avoiding him completely seemed wrong but how much was right? Did bringing up memories produce sad feelings or happy ones? Did the realization that she was separated from Dad mean she would re-live his death?

How does someone with dementia grieve? In a way, it felt as if she was spared, that by her condition, her grief was softened because the loss of her husband was not constantly in her awareness. But it was still a mystery.

I kept the tell-them-once guideline in mind and did not reference that he had died, however as my sister reminded me, guidelines are not absolutes. You have to feel your way through and assess which is more comforting in the moment: to address the loss or to redirect the conversation.

I learned to say just enough. Similar to when a child is asking about a complex topic, you can answer the question briefly in a way that fits the moment. If I sensed there was an unverbalized question in the air about where Dad was, I’d sometimes say: “Dad is in heaven now.” This was something that would have sounded familiar and comforting to my mother, and though I wondered whether the concept of heaven was too abstract, she seemed satisfied with that answer.

To someone with dementia does out of sight equate to out of mind? And yes, I realize these words are forming a strange (if not indelicate) question: What’s on your mind when you’re slipping out of your mind?

He’s out of his mind. She’s losing it. Those are the harsh expressions we use and while there’s some truth to them, we should be careful about totally dismissing anyone – even someone with late-stage dementia. How can you know exactly what they are thinking, feeling or dreaming? They are still here even if not all here.

I learned not to presume and was surprised on several occasions, one of which occurred when I was not present.

Remind or Redirect?

Our cousin, Alison, was having a pleasant visit with Mom. They held hands and Mom was content as Alison made light conversation. As was typical, Mom didn’t say much but she smiled and enjoyed the companionship. She had always been particularly fond of and comfortable with Alison.

At one point, a photograph of my parents in their elder years caught Mom’s eye. What happened next startled Alison. Mom strung together three sentences:

“I don’t know what happened to us. People would comment that we were the couple that always held hands. I don’t know how it came to be that we broke up.”

Photograph from my father’s 80th birthday party

Alison was taken aback. Who would have thought that of all the reasons to formulate, one of them would involve the concept of breaking up? What should she do: remind Grace or redirect her?

She quickly calculated which was worse: To think Tony was dead or that they had broken up? The answer was clear and her response compassionate: “Oh, Grace. You didn’t break up. Tony got sick and then he died.”

Mom understood and accepted the clarification. Alison relayed the conversation to me later: “I just couldn’t have Grace thinking that they broke up.”

I was immensely grateful. Lori and I agreed we would have made the same call.

Out of Sight but not Out of Mind

What do they remember? That answer varies given the day. When Mom was disinterested in photographs or more withdrawn, it was logical to conclude, “She doesn’t remember Dad,” or “She doesn’t think about him anymore,” but those conclusions would have been wrong.

Don’t assume I know her mind. See what the moment calls for. That was my takeaway from Alison’s interaction. If Alison had avoided the topic of Dad, she would have missed an opportunity to comfort her.

Mom’s comment to Alison hurt our hearts. How long had she been thinking that they had broken up? While there was no guarantee she would retain Alison’s explanation, the moment had offered a chance to reassure Grace that the love of her life had loved her always.

It was a lesson that informed us going forward. When pictures were shown or when names came up in conversation, a brief statement helped:

Your grandchild Mary Grace is a teacher like you were.

You and Dad had so much fun dancing.

That’s the centerpiece you made for the holidays. I learned how to do that from you.

Mom received these encouragements in the moment and even if these interactions were distinct – separated with faint dotted lines – each one was important.

Just because they are confused doesn’t mean they have forgotten everything. We can help put the puzzle pieces together, tenderly working on the small section that is in focus today and not worrying about solving the entire puzzle. Rather than a puzzle, a mosaic is a more fitting image.

The metaphor of a mosaic is one I used often in coaching. When you are contemplating a change of some kind and going through a process of imagining what’s next, you get glimpses of the future. At first the insights you collect just seem like random pieces. As you look at them in perspective, however, you see that they are actually pieces of a much larger mosaic – the new design of your future taking shape.

When applying this metaphor to our loved ones with dementia, instead of the mosaic being a vision of the future, it is how they are seeing the past. Yes, it is often a disjointed memory, a piece that doesn’t find its way into the wider frame. This is hard for us to witness, as we want to show them the entirety of their life mosaic – the whole extraordinary design.

Despite mourning the loss of her ability to see the full design, being with Mom taught me to marvel at the exquisite beauty of a single piece of the mosaic – the individual moments of our lives. In some way, each piece was whole, even as it was part of a larger, more comprehensive whole.

Reflection:

• What do they remember today?
• What piece of the mosaic is in focus?