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by Rebecca Warner, author of My Dad My Dog
As Health Care Surrogate for my parents, I navigated the healthcare and caregiving labyrinth on their behalf for 14 years. I was in the doctor’s office with Dad the day the doctor diagnosed him with Alzheimer’s. Over the next nine years, I pursued treatments and therapies to mitigate the disease’s devastating effects. I spent thousands of days with Dad at his nearby assisted-living facility, oversaw every aspect of his medical and caregiving needs, and sat by his side when he passed. The techniques described in this article allowed us to communicate until mere days before his passing.
When it becomes necessary to find new ways to communicate
In the midst of the pandemic, concerned adult children may choose to move their dementia-afflicted parents out of long-term care facilities. Some have fears about COVID-19’s high fatality rates. Others recognize that imposed isolation may accelerate their parents’ cognitive and physical decline.
When they become the primary parental caregiver, children also become the primary communicator, which can present overwhelming complications and frustrations.
With cognitive decline, adult children often find it difficult to learn to communicate well when their loved one’s 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. To learn to speak as the adult without offending our parents’ sensibilities can require we walk a fine line and adjust our expectations.
The Alzheimer’s Association has some excellent advice about communication, and it’s a great resource to help understand what to expect and how to incorporate its recommendations into your personal situation.
My experience with my dad
My dad’s Alzheimer’s progressed slowly, so the changes in how he communicated 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 lost 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 ones, so that a word such as “skillet” became “plate.” But over time, with research, advice and practice, I found ways to facilitate communication with Dad.
6 HELPFUL DEMENTIA COMMUNICATION TECHNIQUES FOR CAREGIVERS
Show him you are listening
Dad focused better and longer when I looked like I was really listening. I am a good listener, so I didn’t have to pretend; but I admit it was difficult at times to keep his attention. When that happened, I looked directly into his pretty blue eyes to show my interest in what he said, no matter how long it took him to say what he wished to say.
Focus on feelings
I also learned to focus on feelings when the words weren’t there. When Dad couldn’t verbally express himself, I read the emotions he conveyed through his body language. One day, I entered his apartment and saw him asleep in front of the TV. When I changed the channel, he sort of grunted, and when I looked at him, I noticed his eyes remained shut, but his jaw was set and his teeth clenched. He was irritated, but 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.
Use his name
I asked everyone, including the caregivers in his assisted living facility, to use dad’s name when they addressed him. Not “sweetie” or “honey”, but Joe. I often used “Dad” to begin or end a sentence. He maintained attention and orientation more easily when addressed directly as Dad or Joe.
Treat him with respect
As I respected dad greatly, it was easy for me to treat him with respect. At times, though, I resisted the temptation to talk down to him when he acted in a way I thought was petulant or obtuse. I reminded myself his behavior was due to his dementia. Since many individuals with Alzheimer’s feel the illness robbed them of their adult status, talking down to them or 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 we still regarded him as an independent adult.
Stop asking “simple” questions
It’s difficult to get out of the habit of asking questions such as, “Do you need to go to the bathroom?”. This question may seem simple, but for someone in a wheelchair or who has problems ambulating, going to the bathroom is a chore. They might hesitate before they respond. If you instead say, “Let’s get you to the bathroom before dinner,” the decision is made for him.
Don’t ask more than one question at a time
In that same vein, if you ask more than one question in the same sentence—in effect giving choices—you may cause confusion. “Dad, do you want to have lunch here or at a restaurant or take a ride on the Parkway first?” doesn’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. A phrase as simple as, “Let’s hop in the van,” is one Dad might take literally; i.e. he might think you want him to hop to get into his handicapped van. From where he sat in his wheelchair, that wasn’t possible for him and therefore caused anxiety.
The bottom line
These six techniques worked really well for me and my dad, but others might work better for you. Mayo Clinic provides additional 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.
About Rebecca Warner
Rebecca Warner is an award-winning author whose fourth book, My Dad My Dog, brings us an endearing story of changes that occur in a family’s life when a daughter moves her Alzheimer’s-afflicted Dad into the home she shares with her husband and elderly dog.
Following a successful career in banking, Rebecca pursued her dream of writing with the publication of her first book, the two-time award-winning political thriller, Moral Infidelity. The popular romantic anthology, Peace, Love and Romance, included her follow-up, Doubling Back to Love. He’s Just A Man, her third book, offers self-help advice for women seeking healthy relationships. Rebecca lives in Asheville,
North Carolina, with her husband, Jason, and their lively, stumpy-tailed cattle dog, Chance. Learn more at rebeccajwarner.com.
Goodreads review by Rochelle Weinstein, USA Today and Amazon bestselling author: “Rebecca Warner’s My Dad My Dog captures the all-too-real world of caregiving for our elderly parents and dogs. Warner writes smart, sensitive fiction, capturing commitment and sacrifice, and the rare, unconditional love that accompanies it.”
Featured photo source: Rebecca Warner