Caregiver and Duet mentor Terry Brashem inspired us to alter our terminology, which makes a difference. We’d like to share this wisdom with you.
“My husband, Mark, was diagnosed with Alzheimer’s at age 66. My first choice was that he would ‘live with cognitive impairment’ versus ‘suffer with it.’ The semantics I chose became the road map for our four-and-a-half year journey. Words matter. By the time I no longer was able to safely care for Mark at home, the common language among dementia professionals had changed from ‘put away’ to ‘placed in a facility.’ Although this sounded better, it still was not what I wanted for him. He needed and deserved more, and so did I. I reframed my thinking and saw this as a ‘move to a caring community.’ That shift in language made the transition a positive experience for both of us. Throughout our lives, people move to new homes that meet their needs. College was fun, but I didn’t want to live in a sorority house forever. Mark’s move to a memory care community allowed him to continue to live his last months safely in his new home surrounded by caring people and appropriate activities. And I continued to be his loving wife.”
“It’s the hardest thing I’ve ever done,” says every caregiver, to a tee. Most cry, while nursing a knot in their gut. That is: Moving their loved one from home to a care community. Notice the language. You are not: Placing your loved one in a facility. Change your words, change your world.
You are not giving up; rather, you are modifying your mode of care. One caregiver, whose late husband was a golfer, employs a club analogy. Usually, you use a certain iron. But if the wind unexpectedly kicks up, then you must reach for another. You’re still aiming to score above par, but due to unforeseen circumstances, you must adjust your strategy.
You promised to keep your loved one at home…again, watch your language—not the promise—but what is home? It is not necessarily an edifice of bricks and mortar. It is a safe, secure place. You are transferring your loved one to a sheltered space where the heavy-lifting aspects of caregiving can be done by staff. You will continue your role as a devoted spouse, child, whatever, as you continue to advocate for your loved one, oversee their care, and visit them. When you made that promise with a narrow vision in mind, you were not aware of the ravages of debilitating afflictions, nor of how your own aging and health issues have eroded your abilities. Don’t let one’s disease take down two people.
How often or long you visit is not necessarily of significance. Aim for quality. For the time and duration you are together, just “be.” Hold hands, hug, rub their back, or simply share proximity. Even without touch, energy will connect you. Your loved one will sense the intimacy. If you allow it, you will, too.
Acknowledgement to Duet caregivers Terry and Anne for their contributions to this article.