Who knew being more positive in our communications would make such a difference?
As caregivers for our husbands, parents, and other loved ones with types of dementia, we’ve learned communication is a constantly evolving process. Communication is not just what’s spoken. It’s all forms of communication. In the beginning of their diagnosis, it’s still natural for us to communicate with our loved one as we have for many years. It’s not yet natural for us to make sure they are understanding what we’re saying – or that we’re intentionally focusing on what they’re trying to communicate. We are Sue Ryan and Nancy Treaster, and through our experiences, we’ve developed four tips to help you in your early communication transition.
- Help them plan their day.
One of the most effective ways to support your loved one is by assisting them in planning their day. This involves understanding what they can realistically accomplish and creating a manageable list of tasks for them to do. The list also makes it easier to prompt them gently throughout the day to complete these tasks, helping them feel valued and accomplished at day’s end.
Nancy’s Experience:
I found that using visual aids can be incredibly helpful. I became known as the “queen of sticky notes” to my husband. I’d leave these notes all over our home – on my husband’s desk for computer-related tasks, on the refrigerator to remind him about his lunch, and in various other places. While he’d tease me about it, these notes truly helped him accomplish his tasks successfully.
As his condition progressed and reading became difficult, I adapted. There was a time when I’d go for morning runs in the neighborhood. To let him know where I was, I’d draw a simple picture of a stick figure running and leave it by the coffee maker. It was like reverting to hieroglyphics – but it worked!
Sue’s Experience:
My husband Jack was always a list guy – his lists had lists! He liked checking off the items on his list. I worked with this trait. Every evening, I’d create a list for the next day. In the morning, we’d review it together, and I’d leave it out where he could see it. Throughout the day, we’d refer back to it and check off items. I’d sometimes pretend I couldn’t remember what was next and ask him to check the list. This approach helped him feel in control, reduced his anxiety about forgetting things, and gave him great satisfaction when he saw his list full of check marks at the end of the day.
- Simplify and minimize.
As cognitive abilities decline, it’s important to simplify instructions and minimize distractions. What worked one week (and yes, sometimes one day) might be too complex the next, so it’s important to constantly observe and adjust.
Nancy’s Experience:
I noticed a gradual need to simplify instructions for my husband. Initially, I just needed to help manage his time so all I’d say was, “Can you go get showered and dressed now so we can leave for lunch?” I needed to allow more time than in the past but he was able to manage the entire process himself. Of course over time, this became too complex.
Eventually, I had to break it down: “Let’s go to the bathroom for your shower.” Then I’d wait nearby and prompt the next step: “What would you like to wear?” We’d walk to the closet together to choose clothes. It was a process of constantly adjusting and inserting myself more and more into these routines as needed.
I also found that minimizing distractions during meals was crucial. I learned to mute the TV and set the table completely before calling my husband to eat. If I had to get up for forgotten items like butter or salt, he’d get up too, and it could take 15-20 minutes to get him settled again. Being fully prepared in advance made mealtimes much smoother.
Sue’s Experience:
I took a very systematic approach to simplification. For each task, like taking a shower, I’d write down every single step involved. Then I’d assess which steps my husband could still manage independently and which ones he needed prompting for. The steps would change over time, so I continuously reassessed and made adjustments.
When we’d go out to restaurants, I developed a strategy to make ordering easier. Before leaving home, I’d look up the menu online and we’d discuss options. At the restaurant, I’d mention to him what we’d talked about: “Oh honey, I’m so excited (whatever the dish was we’d talked about) is still on the menu. It’s what I’m going to have.” When the server came, I’d order first and then prompt him: “And honey, do you still want (the dish we’d talked about)?” This approach maintained his dignity and independence while making the process smoother for everyone.
- Use positive reinforcement and body language.
Positive reinforcement can have a profound impact on your loved one’s mood and cooperation. Even if it feels unnatural at first, offering praise for completing simple tasks can boost their confidence and create a more positive atmosphere. An added bonus – it helps us feel more positive as well.
Nancy’s Experience:
I’ll admit, I’m not naturally generous with praise. I hired a part-time caregiver who opened my eyes to the power of positive reinforcement. She’d say things like, “Excellent job using the soap!” or “Great job putting on your underwear!” At first, I thought it was over the top. Seeing how well my husband responded to this praise completely changed my perspective.
I started incorporating more positive language and encouragement into our daily interactions. It isn’t just the words I use. It’s all of my body language. I look him directly in the eyes. I smile. I get to his level. My voice is encouraging. I use gentle and reassuring touches. It improves his mood and cooperation and changes my demeanor. The shift in my tone of voice and facial expressions creates a much more positive, less stressful environment for both of us.
Sue’s Experience:
I found positive reinforcement was particularly important in the early stages when my husband wasn’t always sure what he remembered or what he was supposed to do. He’d begin something and the uncertainty would kick in. I’d immediately begin reinforcing, supporting, encouraging, celebrating. The more quickly I supported him, the more positive he was able to stay because we were continuously course correcting in smaller ways. This positive feedback helped replace uncertainty with accomplishment.
I also made a conscious effort to maintain positive body language. I would get to his eye level and make direct eye contact. You’ll notice sometimes their eyes aren’t focusing, so it’s important to be both at their level and finding eye contact to really connect. Giving my full attention was an essential part of our communication. I stopped living in the old familiar past of what he used to do and stayed fully present in the moment. This helped create a sense of connection and understanding, even when words sometimes failed.
- Share the truth they need to hear.
While honesty is important, we’ve learned that it’s often more beneficial to share “the truth they need to hear” instead of the whole truth. Rather than think of this as lying, think of it as providing information in a way that minimizes their – and often our – anxiety and frustration.
Nancy’s Experience:
This concept came into play often, especially around driving. When my husband could no longer drive safely, I had to find ways to explain why he couldn’t use the car without causing distress. Sometimes this meant saying the car wouldn’t start, or that I had misplaced the keys. While not entirely truthful, these explanations prevented arguments and kept him calm and safe.
Sue’s Experience:
I found this approach particularly useful when planning outings or trips. If we were going on a complex journey with multiple stops, I learned that giving all the details upfront could be overwhelming and anxiety-inducing for Jack. Instead, I’d simply say, “We’re going to the store.” This gave him the essential information without causing unnecessary stress.
What you’re experiencing in terms of communication during this early season of their diagnosis may feel challenging and strange. You’re constantly adapting and adjusting your approach to what works in this moment. It becomes more natural for you as the journey progresses.
Something else to be aware of in this area is your own grief. I talk about ‘drip grief’, our grieving one thing at a time that is changing. Communication is a major area where there are changes. For those of us who have learned subtle communications with our loved one over the years – a glance, a touch, a sound, these are gradually going away. Remember these with love, honor how their loss makes you feel, and reach out to someone to talk about how you’re feeling.
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As fellow caregivers, know that you’re not alone on this journey.
For more on this topic listen to our podcast episode https://youtu.be/OcbdHu104Ew
We are all on this journey together.
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