What Alzheimer’s has Taught Me About Communication

In June of 2017 my husband, David, and I sat in the office of a kind and compassionate doctor who gently told us that David had early-onset Alzheimer’s. There were the expected moments of silence, then lots of effusive optimism and cheerfulness. There’s no correct way to begin adjusting to devastating news.

It wasn’t a surprise. While David has always been distractible and absent-minded, his forgetfulness had taken on a startling quality in the previous year. I had held out hope that the cause was medications connected to recent cancer surgery. No such luck. The thorough testing, including an MRI and spinal tap, irrefutably confirmed that we were dealing with Alzheimer’s.

As we enter our fifth year of life with this diagnosis, I’ll admit that it’s a HUGE challenge. And like all challenges, lessons surface amidst the grit and struggle.

What has Alzheimer’s taught me about communication? And how can this be of value to you?

Communication with David

Alzheimer’s does not arrive with all its various symptoms intact. It is a steady decline of both cognitive and physical abilities, in no particular order. What David can understand and do today, he may not be able to understand or do tomorrow. And yet, he may be able to understand and do some of these things next week. Erratic to say the least.

As his primary caregiver, this has been my most difficult challenge. Why? Well, I have always thrived by creating schedules, processes and systems for getting things done. I appreciate efficiency and speed. Turns out that I rely on those around me to listen up, move quickly or get out of the way. Alzheimer’s does not adapt to my requirements.

As changes to David’s comprehension surfaced, I often allowed my frustration to have the upper hand, which only added to our difficulties. The solution? Taking a hard look at my behavior. These were my most common communication errors (now included in The Phone Lady customer service workshops):

  • Saying “no” way too often, i.e. “No, you do it this way.” As an adult, it really gets under David’s skin to be told “no”. I had to change my language to “How about we try this …” or “Let’s do it this way …” 
  • Speaking faster when I had to repeat myself or when I was in a hurry. Being in a rush isn’t something I can do anymore … if I want to communicate with David. 
  • Speaking louder when he did not understand or react as quickly as I expected. For David, this was yelling. He doesn’t (yet) have a hearing problem, he has a comprehension problem. 
  • Saying multiple things in one sentence. David can only take in one idea or thought at a time, and that at a very slow pace. 
  • Giving him too many choices. I had to learn to offer only two options or simply say “Let’s do this …” .

Communication with Health Professionals

While I’m continually simplifying my communication with David, my conversations are more complex with our doctor, pharmacist and nurses. I’m now responsible for monitoring every aspect of his health (body and mind) and speaking to others on his behalf, a task that is accompanied by large servings of worry and doubt.

Fortunately, what’s needed here is very similar to what’s required for excellence in sales and customer service – great note keeping. If you were to visit my home you’d find mini charts on index cards in various locations. They provide information on everything from his medications to his exercise routines and sleeping patterns. There are diaries as well, filled with details of his daily activities and changes in behaviour.

I’m currently speaking with our family doctor every three to four weeks. A nurse visits our home weekly. The note keeping allows me to prepare for these conversations and provide accurate information. It also helps me ask for, and receive, the support we need.

Communication with Caregivers

We are blessed to have Helen in our lives (thank you for the referral Eilidh Lindsay-Sinclair). In a few weeks we will celebrate a year together and she has become more important to us than … ice cream! With Helen, I continually add to my life-long learning about listening.

As we were getting to know each other, I would sometimes be half attentive to her ideas and suggestions, only to have her wisdom proved to me weeks or months later. I’m no longer so foolish. Her experience makes our life easier.

Helen’s compassion, and unfailing respect for David, are at the foundation of our excellent communication. I have found this same level of support with Erin Johnston, our Care Coordinator, Continuing Care, Nova Scotia Health. It has confirmed for me that compassion is an essential ingredient in every conversation.

My interactions with other caregivers hasn’t been as successful. But it has confirmed for me the value of always considering the backstory – what’s impacting someone’s reactions within conversation.

For example, I recently cancelled service from a homecare company. I wasn’t angry. It simply didn’t provide what we needed. However, when I reached the manager to cancel, she immediately became defensive, the verbal equivalent of putting her fists in front of her face.

As The Phone Lady, I’ve had the privilege of working with this industry. I’m aware of the pressure they are under to meet client needs, as well as the stress of continually being short staffed. All of this influenced her reaction to me. To avoid big and unnecessary emotion, I slowed down, smiled and took full responsibility for the cancellation. We were able to hear each other and we didn’t add any anger to our day.

I’m sure there are more communication lessons headed my way and, as I figure them out, I’ll definitely be sharing them with you. In the meantime, look for my post on July 18 when I’ll share what Alzheimer’s has taught me about work/life balance.

#InspireConversation

12 thoughts on “What Alzheimer’s has Taught Me About Communication”

  1. Mary Jane, thanks for sharing all this information with us. At one time or another all of us will face a challenge in our lifetime, whether is will be medical, business or family matters there will be a time when we will recall your story and it WILL help us get through it. Reading your story has been inspirational while at the same time I can feel the stress you have been suffering. Best of luck in the future and I’ll be watching for your updates.

    Reply
    • Thank you, Frieda, for your lovely words. And you are right, we all face challenges. I have learned from the experiences of others and decided to pass along this information in case it is valuable. We are very fortunate to have lots of support, including you, and that makes a huge difference. Take care of yourself and enjoy this summer.

      Reply
  2. Thank you for sharing the story of David and Mary Jane. You have given me more than you know. You are a very special woman.
    Carole

    Reply
  3. Bless you Mary Jane. I’m going to share this with a friend who’s husband has been diagnosed with Alzheimer’s recently. Such a tough journey but you’ve got the right attitude and your tips for coping are so thoughtful and wise.

    Reply
    • Thanks, Martha. I’m so pleased that you are going to share the post. And do let your friend know to reach out directly if a conversation is ever helpful/supportive.

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  4. I’m sorry to hear you are on this journey, Mary Jane. But how wonderful that you are sharing the insights gained. There is no one-size-fits-all way to communicate – every audience is different. Your experience makes that very apparent. All the best to you!

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  5. Thank you MJ for sharing. First, I want to say that I love the photo of you and miss you. I cried reading your post because I care deeply for you and I am sad that David is in this situation. As you know my mom is in the same situation but we have managed, so far, to keep her happy and to keep my mom and dad in their apartment functioning fairly well with support. Your post rang true for me on many levels. I would love to see you and hug you, now that we can. With much respect and love – Sheila

    Reply
    • Thank you, dear Sheila, for this lovely note. I think of you often, particularly of everything you did with your mom when she broke her hip. You shared with me the story of carefully taping the note to her tray that you’d be back soon but in her need for activity, she picked it all away and then was wondering when you’d return. It does take a village to support our family members with Alzheimer’s. We will see each other soon!

      Reply
  6. An absolute must read. Thank you Mary Jane for sharing your journey and learning with us. Your innate and learned wisdom will help so many. You are a beautiful soul my friend.

    Reply

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