Peter can no longer grasp overly abstract ideas, and Susan frequently has to reframe what she says, how she says it and even when she says it. She relies deeply on Teepa Snow’s basic Do’s in “just having a conversation.” This means she has learned to go with the flow, use supportive communication techniques and rely more on objects or examples to help clarify an idea. Since their married daughter, Janine, has been traveling on a river boat down the Rhine recently, Susan uses their International Atlas to show Peter the couple’s daily itinerary.
She often finds herself gesturing and pointing, such as when Peter cannot find the word for his favorite cereal. Instead of trying to say the word, she points from one box to another until the correct one is identified. Once so stoical, Peter now weeps easily when he’s both frustrated and happy. Rather than trying to uncover some hidden meaning, Susan simply acknowledges and accepts his shifting emotions by using familiar phrases—“you’re fine, darling, it will be OK”—to soothe him. She’s also found that if she can engage him in a favorite interest, such as his precious coin collection, she can both respect his values and beliefs, while avoiding the negative.
Teepa Snow’s training materials also taught Susan that later in the disease, she will be focusing more on making an emotional connection, rather than “having a conversation.” She is prepared to use visual cues, such as props or objects in their interactions. To get his attention, she can lift up a book, which serves as a signal for “time to get ready for bed” and “story time.” She will talk a great deal less, wait longer to hear him out, take turns to speak and keep it short. She will never confront him if he isn’t getting the words, but simply nod in ascent, showing how she is enjoying the exchange. She is likely to start interactions with familiar speech— “How are you?” “Did you sleep well last night?” “Did you know it rained last night?” “Tell me about the new friend you met at Adult Day Health.” It makes little sense in late stage dementia to insist on a reality orientation or correcting errors.
Susan understands she must be well connected emotionally before she can distract her husband, when he is on a negative roll. Visual cues work best, she’s been told, and they should always be positive. She invariably knows that when she pets the dog, Peter will move forward to stroke his beloved pet.
Susan recognizes from the onset of Peter’s diagnosis that she will need a supportive network. Caregiving is not a role for the “lone wolf” or martyr. She begins by contacting her two daughters, who fortunately live only a few hours away. Both have offered to provide respite time for Susan once a month. That makes only six weekends a year for each girl. Both daughters, Janine and Patricia, express delight at spending quality time with their dad. They also intend to step forward for a “social call,” when brother Johnny comes marching home for his annual visit. Now that they have their own children, they can appreciate the tough times their folks experienced during their younger brother’s defiant adolescence. Both sisters know Johnny’s hot spots, and can sidetrack him from verbally attacking his dad by taking him to movies, cooking his favorite dishes and everyone playing a mean game of “Train” with their dad’s domino set.
Calling on her retired sister, JoAnn— who, after sympathizing deeply with her, consents to bringing her husband and taking over the caregiving for Susan’s much-needed yearly two-week vacation. Over the years, Peter has always enjoyed his sister-in-law and finds her husband, Mack, a “regular guy and a great fisherman.” Susan plans to continue her annual travels, this time with a daughter or friend. She’s excited about re-visiting the Grand Canyon with her new digital camera.
She also lets her favorite neighbors know Peter’s diagnosis, and asks for their help in relieving her while she shops or goes to the dentist and even visits friends on occasion. They soon discover how overjoyed Susan can be when they also volunteer to pick up a few groceries on their way home from work. Ben, next door, is especially helpful, keeping watch out his window for any sign that Peter might need a pal. Since he works at home, dropping in for coffee or to share a new guitar CD gives him a well-earned break and allows Susan to complete some household tasks. She may even pick up her latest novel and read in peace and quiet for a few minutes.
As a stay-at-home mom, Susan developed what turned out to be a perfect hobby: scrapbooking. Her kitchen cupboards are bursting with old and new volumes celebrating their family life together. Peter never tires of gazing at the childhood snapshots: there’s seven-year-old Janine with a missing front tooth, five-year old Patricia’s chopped hair after she took a pair of scissors to her lovely locks. Johnny, the athlete—what a kid! Here he is at 10 in his football outfit showing off after making three touchdowns. Susan has managed to pry loose and remove all of Johnny’s photos taken during those “bad” years, until he settled down with a diagnosis and medications. No point in “getting dad started again.”
Another lifestyle change that suits both Peter and Susan is to alter their eating habits: whole foods, low or no dairy, plenty of fish, and stacks of fruit and vegetables. Susan’s found her energy level is so much higher, and Peter’s digestion and moods have improved remarkably.
(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)
*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.