Very early on, even before the better known symptoms of confusion and forgetfulness become noticeable, people with Alzheimer’s may begin withdrawing from interaction with others. They may back away from conversation and be more reserved in gatherings, even with family and friends.
I believe the withdrawal comes from fear. Especially in the early stages of the disease, I think people with Alzheimer’s are very aware something is wrong. In the middle of an ordinary situation, they don’t know what to do or say. They knew just a minute ago—they’re sure they knew—but now they’re lost. In a very familiar place among people they know well, they’re lost. Their natural reaction is to hide the confusion.
My mother would smile, nod, act as though she didn’t hear what was said to her, or say “You go right ahead. I’ll follow you.” She never asked for help, never admitted she was bewildered; instead, she backed as far away from the interaction as she could get. At this point in the disease her confusion was temporary; in an hour, maybe less, she might be engaged in the conversation and activity again.
This had been going on for months, maybe years, before Mom was diagnosed with Alzheimer’s. For a while I’m sure I didn’t even notice it. When I did notice, I ignored it because it always passed. But eventually the episodes lasted long enough for me to recognize a look that came into Mom’s eyes and a blank expression that came over her face. The look I recognized as fear, and the expression I interpreted as uncertainty. Put them together and they said “confusion.” Utter. Debilitating.Terrifying.
I look back and weep at the panic Mom must have felt, trying to hide it, fighting it alone.
The good news, and the bad, is that eventually the disease progressed to the point where Mom was no longer aware she was confused.
The miracle, however, is that long before that time came, I found ways to help her continue to enjoy interaction with others, whether it was me and Dad, just family, or a larger group.
- In everyday conversation, I stopped asking Mom “Remember when…?”
- I helped her answer questions by giving her choices: “The dress you wore to my wedding—did you make it or buy it?”
- I accepted whatever answer she gave.
- If I could tell she was confused, I didn’t ask questions at all. Instead, I looked directly at her and talked about whatever seemed to hold her attention. I think she was content because it appeared her part of the conversation was simply to be there. She could do that.
- I put items on the table, usually only one or two at a time—magazines, photos, a flower in a vase, a bag of seeds—that I thought she could talk about. If she wanted to. If she didn’t, that was fine, too.
- When other people were around, I watched Mom closely. If she appeared to need help, I’d move to her side, take her arm, and supply comments and answers she could agree with: “You planted those spider lilies a couple of years ago, right, Mom?” In my mind, the physical contact was like an anchor. If her reality suddenly disappeared, she wouldn’t float away with it.
- Larger groups almost always made Mom uncomfortable, even before Alzheimer’s. After Alzheimer’s, we tried to avoid them entirely, because the paralyzing confusion was almost guaranteed to ambush her in that setting. On the rare occasions we did find ourselves in a crowd, I sat with her or walked with her, occasionally leaning over to whisper something funny in her ear. I smiled into her face, she got the cue to smile back, and all was well.
Helping Mom interact in her own ways without being embarrassed and afraid kept relationships alive in spite of Alzheimer’s. I think interaction, whether verbal or not, kept Mom present—not just alive, but living her life and maintaining her place in her world for as long as possible.
Have you found effective ways of keeping your loved one involved and in touch? Will you please contribute them here?
We all need all the help we can get, especially from those who know exactly what we’re facing. That’s us—each other—we’re the ones on the front lines. We know what works and what hurts. Let’s help each other, and ourselves, by sharing. Yes?
“Call to me and I will answer you and tell you great and unsearchable things you do not know (Jeremiah 33:3 NIV).”
Lord, just as we have committed ourselves to be with our loved ones, You have promised You will always be with us. Help us to see, Lord, that our presence as caregivers is one way You are present with us. Our sharing suggestions and strategies is one way You help us all to cope. Help us encourage our loved ones, Lord, and each other.