Children are moving their dementia-afflicted parents out of long-term care facilities due to fears about COVID-19’s high fatality rates, and/or because they recognize that imposed isolation is accelerating their parents’ cognitive and physical decline.
In becoming the primary parental caregiver, children also become the primary communicator, which can present complications and frustrations that soon become overwhelming.
One of the most challenging aspects in dealing with loved ones’ cognitive decline is learning how better to communicate when their ability to express themselves diminishes as their dementia progresses. We have, after all, been the child who communicated with our parents in a certain way for decades. Learning to speak as the adult without offending our parents’ sensibilities can mean walking a fine line and adjusting our expectations.
The Alzheimer’s Association has some excellent advice about communication, and it’s a great resource for understanding what to expect and incorporating its recommendations into your personal situation.
My dad’s Alzheimer’s was the slow-progressing kind, so his changes in communicating came in stages and over time, unlike fast, severe dementia which removes the ability to speak at all. In Dad’s case, the changes had a tendency to surprise me when I realized, for instance, that he was losing his train of thought much more often. Or that he took longer to respond because he was trying to organize his words logically. A later-stage change for Dad was trouble in finding words. Instead, he might use familiar words to replace lost words, so that a word such as “skillet” became “plate.”
But over time, with research, advice and practice, I found ways to facilitate communicating with Dad.
Dad stayed better focused when I looked like I was really listening: I’ve always been a good listener, so I didn’t have to pretend; but I admit it was difficult at times to stay focused. When that happened, I looked directly into his pretty blue eyes to let him know I was interested, no matter how long it took him to say what he wished to say.
I also learned to focus on feelings when the words weren’t there. When Dad couldn’t verbally express himself, I focused on feelings conveyed through his body language. I entered his apartment one day and, seeing he was napping, changed the channel on his TV. He sort of grunted, and when I looked at him, I saw his eyes were still closed but his jaw was set and his teeth were clenched. He was irritated, but he either couldn’t summon the words to tell me that, or he didn’t want to offend me. I hit the “previous” button on the remote and his show came back on. His features completely relaxed as his irritation dissipated.
Using his name when addressing him is something I asked everyone, including the caregivers in his assisted living facility, to do. Not sweetie or honey, but Joe. I often used “Dad” to begin or end a sentence. Being addressed directly by Dad or Joe helped him maintain attention and orientation.
Treating him with respect was easy enough to do, because I respected him greatly. But at times I had to resist the temptation to talk down to him when he was being what I thought was petulant or obtuse. I had to remind myself his behavior was due to his dementia. Since many individuals with Alzheimer’s feel that the illness has robbed them of their adult status, talking down to them or talking about them as if they aren’t there diminishes their already-eroded sense of self-respect. I learned to overcome that impulse, but it was much harder to get others to do the same. Busy doctors, for instance, just wanted to speed things up by talking to me directly about “him.” I respected their time, but including Dad in the conversations as much as possible gave him confidence that he was still being seen as an independent adult.
It’s difficult to get out of the habit of asking questions such as, “Do you need to go to the bathroom?” It may seem like a simple question that should yield a simple answer, but for someone in a wheelchair or who has problems ambulating, going to the bathroom is a chore. There might be hesitation in responding. By saying instead, “Let’s get you to the bathroom before dinner,” the decision was made for him.
In that same vein, asking more than one question in the same sentence—in effect giving him choices—caused confusion. “Dad, do you want to have lunch here or at a restaurant or take a ride on the Parkway first?” didn’t work nearly as well as saying in a calm, relaxed tone, “Let’s go get a hamburger before we take a ride on the Parkway.” I learned to choose my action verbs more carefully, too. Phrasing as simple as, “Let’s hop in the van,” might be taken literally—he might think he had to hop to get into his handicapped van. From where he sat in his wheelchair, that wasn’t possible for him to accomplish, and it could bring on anxiety.
These are techniques that worked really well for me and my dad, but there are others you might find work better for you. Mayo Clinic provides even more suggestions for effective communication.
Patience, biting your tongue, searching for and practicing better ways to get through to your parents, and accepting and adjusting to their ever-changing way of speaking can be frustrating. But doing the work and getting positive results, no matter how small, can make your efforts immensely rewarding. By using these techniques, I kept in touch with Dad longer than I thought possible.
There were times we both became agitated and weary, but neither of us stopped trying. And the words, “I love you,” so often conveyed all we really wanted and needed to say when other words failed us.