It’s been two years since I’ve seen my friend who has early onset Alzheimer’s. When I learn she’s coming to town, I’m both excited and nervous: excited to see this charismatic, interesting and brilliant woman and nervous about communicating. Though she’s functioning very well, she’s told me her directional, reading and math skills have been impacted by the disease. How will her dementia affect our conversation?
We meet at a restaurant, hug, exchange a few pleasantries, and order our meals.
Then we look at each other. My brain is racing: what shall I say? How shall I start?
Finally, I pose the same questions I might ask any friend: “What is bringing you joy these days?’
She answers, eyes shining, telling me about her beloved husband, her stalwart friends, her garden and her meditation practice.
Then she tells me again about her meditation practice.
“I forget things sometimes, so don’t worry if I say the same thing twice,” she says.
My shoulders relax. I appreciate the honest and easy way she’s brought up the subject of dementia. Now I can ask, “What are you learning from your experiences?” Patience, acceptance, surrender, she says. By sharing the details, she’s helping me understand some of what she’s going through and allowing me to be a better and more compassionate friend.
Mary Cail, PhD, author of Alzheimer’s: A Crash Course for Friends and Relatives, offers this simple equation for compassionate communication during a visit:
- State the reality: I can’t imagine what it’s like to…
- Describe the situation: be in early dementia, etc.
- Say what you would like to do: I wish I knew what to say.
- Say what you can do: I can listen.
Then be quiet. As you listen, you’ll become more adept at knowing what to say. Chances are, just listening is enough.
Create Connection by Sharing and Listening
As you plan your visit, think about what your friend might need or want. Here are some additional ideas:
Bring something to share or to talk about. Sometimes reading a poem, story, newspaper article, depending on your friend’s interests, helps ease you into deeper conversation.
One man always brings a special rum cake and a Salsa CD for his friend: she’s in a care facility and often wants to dance. Another brings photos from their earlier adventures together. Another brings a grab bag with fun games, books, magazines and treats.
Bring a mutual friend with you. That widens the conversational possibilities.
Reach Out to Your Friend
Charlie and his wife Elizabeth have always had a wide circle of friends and Charlie’s diagnosis of Alzheimer’s has not changed that. Here are some tips:
“The person with Alzheimer’s may not be able to initiate a get together,” Elizabeth says. She always appreciates it when Charlie’s friends call him. Early on, Elizabeth helped Charlie stay in touch with a call sheet that listed Charlie’s closest friends and their phone numbers.
Honor the relationship and Plan Your Visit
Many of Charlie’s friends are life-long. These friends always call Charlie first to plan a visit. Sometimes Charlie will say, “Better check with Elizabeth; she keeps the calendar.”
Other times, the friend will later check with Elizabeth and make sure she knows about the plan, as Charlie has a tendency to forget details.
Learn from the Spiritual Journey
Elizabeth helps Charlie with his social calendar and Charlie helps Elizabeth with her spiritual practice. “Charlie journals daily on acceptance and gratitude. He practices being grateful for the small things in life,” Elizabeth says. “I’ve learned a lot from him.”
Mary’s book and blog:
Alzheimer’s: A Crash Course for Friends and Relatives
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
One response to “Staying Connected When a Friend Has Early Onset Dementia”
I am always amazed at your endless creative subjects on noticing, feeling, and responding with love. Your wealth of information applies to all relationships!