Communication often becomes what I describe as a beautiful, awkward dance in which we try to find the right steps to complement the moves of our partner. I find that sometimes my clearly spoken words are not enough in my caregiving journey with my parents, so as a result, I must shift to other methods.
COMMUNICATING WITH CARE RECIPIENTS
For instance, I have asked Ms. Ruby (aka momma) to lift her leg to put her foot in her pajama bottoms or her briefs. While she clearly heard me and could repeat my request, she still did not often comply.
I surmised that her condition (vascular dementia due to a stroke) caused the message to get stuck in transit. Therefore, I began communicating differently. When I gently tapped her ankle, she immediately responded by lifting her foot and placing it in the pant leg. This method has worked well and consistently for this situation, but not as well for other things.
One day recently, momma seemed to have gotten stuck in position as she dangled an empty shake bottle over the little trash can near her feet. I tapped the top of her hand, but she did not release the bottle. I tapped again with a little more force, but still no movement. Then, I tapped the empty bottle and tugged on it a bit to encourage her to release her grip. Her instincts kicked in and caused her to grip the bottle more firmly.
We win some and lose some.
My communication with daddy requires a different approach, although he also lives with dementia. He has more memory deficits than momma, and his cognitive impairment prevents him from remembering whether he’s had his beloved coffee or not. However, it does not cause him to forget who we are.
If I am rushing or super focused on something that I need to do, my behavior becomes one that may be described as impersonal. I’ve learned that when I’m like that and barking orders to daddy to rush things along, he does not respond well if at all. He often becomes obstinate and mouthy. I’ve learned to check my attitude at the door because daddy is so attuned to my mood, demeanor and facial expressions. For those reasons, I have mastered becoming charmingly assertive with him while also exhibiting a bit of patience. He feeds off that and usually responds positively and cooperatively. Additionally, explanations and supporting evidence is helpful in getting him to cooperate fully.
Encouraging care recipients to communicate their feelings and desires is essential in the caregiving journey. Gathering their input helps to preserve their dignity and worth
COMMUNICATING WITH THE CARE TEAM
Sometimes the other caregivers and I pass each other coming in and going out of my parents’ home, or as we are navigating from room to room, and still forget to communicate pertinent information with each other — like the AC guy or physical therapist is coming, or we are out of laundry detergent. We find it very important to slow down enough to communicate with everyone who assists with my parents’ care.
My husband and I have made a habit of debriefing daily about our visits. We also use group texts to update everyone on medication and behavior changes. The group texts let the sender share a message one time instead of multiple times and provide an archive of shared messages that can be referred to on demand.
COMMUNICATING WITH MEDICAL PROFESSIONALS
Effective communication includes caregivers and care recipients sharing changes, medication reactions and new behaviors with medical professionals. Because I often have forgotten to share pertinent information during a doctor’s appointment, I started jotting things down in the notes app on my phone to reduce the chances of forgetting. Being diligent in sharing this information allows the physicians to make more informed decisions about medication changes and suggestions to give patients and their caregivers. This detailed sharing has helped my parents’ doctors reduce medications, change dosage and give new diagnoses that may not have occurred otherwise.
Unfortunately, not all medical professionals understand dementia. During our visits with new providers, I almost always must inform them of my parents’ dementia diagnosis and encourage them to adjust their communication with us. I am always very uncomfortable doing that because it feels disrespectful to talk about my parents while they sit listening to us. I also often pause to allow them to answer questions from the doctor or nurse to keep them engaged in their healthcare. To help reduce the awkwardness of verbalizing the dementia diagnoses, I have created cards that I can hand to medical staff and show them on my phone.
COMMUNICATING WITH FAMILY AND FRIENDS
My parents rarely call family and friends and do not visit as they once did. They do, however, sometimes ask about loved ones that they haven’t seen in a while, and our family and friends always ask about them. Because of that, we try to make sure we keep their cell phones charged and placed where someone will answer them and return calls when they feel up to talking (which is not that often). We also make it a habit to update my brother (who lives in Texas) after doctor visits when there are changes in medications and/or diagnoses.
Effective communication can help improve care, enable better decisions from caregivers and physicians and prevent patients from succumbing to loneliness. Although we often share “I love yous” with each other, my parents enjoy the physical affection of our interactions. When he receives a kiss, daddy usually says, “Thanks! I needed that.” There are times when I need hugs and kisses even more than they do.
Don’t underestimate the verbal and non-verbal communication in caregiving. It can make all the difference.
Tracy Daniel-Hardy, Ph.D, is the author of “The Adventures of Butch and Ruby: Chronicles of a Caregiver” and director of technology for Gulfport School District. She may be contacted at tracy@drtracydanielhardy.com.
