What’s That You Say?

My husband, Gary, has an inoperable brain tumor that wraps around three lobes of his brain. This can affect his memory, hearing, comprehension, speech and more, but he copes remarkably well. His biggest frustrations for himself deal with his issues surrounding aphasia (difficulty expressing oneself through speech), anomia (difficulty remembering names of things), and hearing loss.

Gary’s hearing loss affects our daily life as his brain has to work even harder to process sounds and conversations. Even with his hearing aids, he can get very tired and frustrated due to the increased mental effort required to understand and communicate with others. While a hearing loss can be isolating and depressing, it has a similar impact on family caregivers. I am often frustrated and can hear the irritation in my voice as I repeat myself again in a louder tone. Sometimes I wonder if he can’t hear me because of hearing, confusion, comprehension or is simply tuning me out. 

He complains that I treat him like one of my students at times, and he is correct! 

StatsCan reports that 60% of Canadian adults have reported hearing loss, tinnitus or both conditions. Hearing loss can be inherited or caused by disease, medication, trauma, or exposure to loud noises. Tinnitus is a condition where there is a perceived ringing, hissing, roaring or buzzing sound that won’t go away. While many people are unaware or in denial about their decline in hearing, it seems to affect more men than women and increases with age. 

The biggest impact of hearing loss is felt in relationships. When one of my friends was struggling with her hearing loss, she complained that her husband was doing things “on purpose” so she couldn’t hear him. This woke me up to the ragged truth that Gary felt the same way, and I needed to change my busy behaviors to have a more harmonious marriage. We have daily moments of miscommunication and it starts first thing in the morning when he forgets to put in his hearing aids. I try to communicate in the way he needs, as well as support him in difficult listening situations, but it is a tall order for my monkey mind. 

Here is my “to do” list for positive communication with my amazing husband or anyone else with hearing impairment. 

  • Say his name before starting a conversation and face him when talking.
  • Speak clearly, slower, and distinctly.
  • Stay in the room, don’t walk or turn away.
  • Provide important info in writing (ie, directions, schedules, grocery lists).
  • Let him see my lips moving.
  • Follow Mom’s rules, “Keep your hands away from your face,” and “Don’t talk while you are eating.”
  • Talk to his “good side.”
  • Avoid loud TV or music if I really want to communicate. 
  • Pause between sentences, and use his facial cues to see if he understands.
  • If I feel misunderstood, find a different way of saying the same thing rather than repeating.
  • Don’t expect that he can follow my train of thought and avoid sudden changes of topic.
  • To help him in group settings, try to repeat the questions or key points without speaking for him.
  • Avoid saying “never mind.” It is dismissive and doesn’t contribute to a positive relationship.
​While laughter continues to be our best medicine, there are times when we are both frustrated and have to dig deep to find understanding and patience. Agreeing to communicate in a healthier way helps bring harmony to our home. We are trying to learn some simple sign language to ease our frustrations with communication, and that is a good work out for both of our brains.  

I have mastered the signs for “more” and “coffee” and he is the best barista I know. 

The Elk Valley Caregiver Support group now meets in Fernie at CBAL(402 Hwy 3, unit 1A) on the 4th Wednesday of each month at 2pm. For more info:
Marianne Agnew, Elk Valley Caregiver Support Facilitator, pineconelodge5305@gmail.com, caregiversnetworkek.com