Learning to love a ‘different mom’

Actress Kimberly Williams-Paisley, wife of country star Brad Paisley, opened up about her mom’s battle with primary progressive aphasia (PPA) in an essay for Redbook titled “How I Faced My Mother’s Dementia.” PPA is a rare form of dementia with no cure.

Williams-Paisley shares that since her mom’s diagnosis more than a decade ago, “I’ve watched a passionately joyful woman, a devoted mother, an engaged listener and friend deteriorate and transform into someone almost unrecognizable. It’s been agonizing to slowly lose her.”

Watching a loved one’s personality change and their ability to recognize you slowly fade is emotionally devastating to the primary caregiver, family members and friends. What kind of a relationship can you still have? Williams-Paisley shared that “I needed to love my mother in a different way.” Learning to communicate in new ways that do not upset or overwhelm your loved one is important in this journey. However frustrating, maintaining communication throughout the disease’s progression is important.

Health experts say that your communication needs to evolve in order to be most effective.

“A person with dementia can have a subconscious appreciation of communication that is independent from speech. Communication is not just words, but also the feelings generated by the soothing sound of a person’s voice, a hug or a gentle touch of the hand,” said Dr. Melvin Wichter, chair of neurology and co-director of the Neurosciences Institute at Advocate Christ Medical Center in Oak Lawn, Ill.

The Alzheimer’s Association recommends the following strategies for communicating with patients who have Alzheimer’s and other forms of dementia.

Be patient and supportive.
Let the person know you’re listening and trying to understand. Show the person that you care about what he or she is saying and be careful not to interrupt.

Offer comfort and reassurance.
If he or she is having trouble communicating, let the person know that it’s okay. Encourage the person to continue to explain his or her thoughts.

Avoid criticizing or correcting.
Don’t tell the person what he or she is saying is incorrect. Instead, listen and try to find the meaning in what is being said. Repeat what was said if it helps to clarify the thought.

Avoid arguing.
If the person says something you don’t agree with, let it be. Arguing usually only makes things worse — often heightening the level of agitation for the person with dementia.

Offer a guess.
If the person uses the wrong word or cannot find a word, try guessing the right one. If you understand what the person means, you may not need to give the correct word. Be careful not to cause unnecessary frustration.

Encourage unspoken communication.
If you don’t understand what is being said, ask the person to point or gesture.

Limit distractions.
Find a place that’s quiet. The surroundings should support the person’s ability to focus on his or her thoughts.

Focus on feelings, not facts.
Sometimes the emotions being expressed are more important than what is being said. Look for the feelings behind the words. At times, tone of voice and other actions may provide clues.