Listening Between the Lines

Listening Between the Lines is uplifting for people with dementia and caregivers. Since this affects all of us, it deserves our focused attention.

The Real World

As dementia progresses and communication skills decline, our loved ones increasingly feel lost and alone. This sense of isolation creates emptiness and pain. Everything that is going on feels like a threat to their dignity. They begin to measure their lives in terms of real or imagined memories, not minutes. At some point, they start having difficulty separating one sound from another. But while dementia changes behavior and communication skills, loved ones do not lose their need for affection, comfort, and connection.

The more we feel our love for them, the more intensely we share their pain. So, when verbal communication declines, it's time for us to open our eyes, to become more aware. Even when the ability to speak has been lost, companionship can replace it. Instead of thinking about restoring conversation, think about connecting in new ways. People have an innate desire to be social. We all are more content and secure when we feel the closeness of the people in our lives.

Finding Solutions

The stark truth is that dementia will not get better, and we need to channel our energy into making the situation as good as it can be. Here are some observations that can help you achieve that:

Communication usually doesn't disappear – it changes. Caregivers can learn to “listen” by watching facial expressions, gestures, movements, behavior, and changes in routine.
Pay attention to context. What has recently happened often alters the meaning of our loved ones' words.
Watch what they avoid. Often what a person doesn't say is significant.
Listen without screening messages through your own agenda. Enter into their reality. Since they cannot change, we must.
Look at the whole body: facial tension, changes in breathing, posture, muscle rigidity, withdrawal, pacing, reaching, or turning away all can carry meaning.
Listen to tone. A person saying “I'm fine” in either a quiet or irritated voice may be communicating something different from their words.
Stop focusing on words and start observing everything else. Sometimes in that quiet space between words, you discover that the connection you feared was gone is still there.
Maintain eye contact to assure your loved one that you are truly listening. With little effort you can create a twinkle in your own eyes. Be aware of the expression on your face and what it is conveying. Every chance you have to nod or pat the person's arm in affirmation will encourage their confidence and contentment.
Never underestimate the importance of touch. When appropriate, touching is a powerful sign of affection (fingertips tenderly caressing cheeks, neck and shoulder rubs, brushing hair, holding hands).
Sitting quietly together, listening to familiar music, looking through photographs, or doing familiar activities can communicate safety and affection without words. In more advanced stages, looking at pictures of infants may elicit far more delight than trying to have a conversation about babies.
Pay particular attention to changes in behavior. A sudden change shouldn't automatically be attributed to dementia. Pain, constipation, infection, medications, dehydration, poor sleep, hearing/vision problems, or other medical issues can cause someone who cannot explain themselves to behave differently. A new or dramatic change warrants a medical evaluation.

How do we create love? We give love. When we smile, hug and demonstrate our concern, they will feel safe. They may forget who we are, but we will give them moments of joy. And they will associate us with happiness and goodness, constantly supporting their esteem and contentment. Eventually, we will not be recognized as ourselves. But emotions run deep, and we can still make a meaningful difference.

Who Wins?

Everyone wins when we listen between the lines. Loved ones feel more connected and isolation fades – at least for a little while. Attentive listening is a validation technique that reduces anxiety and boosts self-esteem. No caregiver can maintain this intensive behavior fulltime, but Naomi Feil, who developed the validation method for creating meaningful interactions with seniors experiencing mental changes, found that only eight minutes a day makes a significant difference. What matters is that someone is listening unconditionally with their heart and soul. The message is “You are important and I care.”

The bonus for caregivers is that by listening between the lines we prove to ourselves that we are care companions driven by love, not simply caregivers performing tasks or fulfilling responsibilities. It changes our experience with this disease. We are renewed because we are providing dignity, companionship, and comfort to someone we deeply care about. This makes us feel whole and gratified. So, listening between the lines is also a gift to ourselves. Just being in the same room with someone you love is a blessing, but you don't fully appreciate this until they are gone.