Happy Valentine’s Day to all those caregiving spouses who daily reaffirm their vows! That doesn’t mean they don’t also need help. Learn what you can do as a family to be sure the “well spouse” doesn’t lose their own health as a result. In our middle article, we add to our series about communication in the context of dementia. Listening is half the equation. You also need to learn optimal ways to speak so your loved one can comprehend what you are trying to get across. And in our last article, we share the ways you can help your relative slow, or even halt, the progress of a leading cause of legal blindness: Age-related macular degeneration.
"For better or for worse …"
Are you supporting a relative who is also a caregiving spouse? Many long-lived couples see it as both a duty and a privilege to walk that last mile with their partner, fulfilling vows of “for better or for worse.”
That does not mean the journey is easy. Caregiving partners often experience physical challenges as they assist with bathing and walking. And there are crises, such as falls. Plus, nearly two-thirds of caregiving spouses have medical conditions of their own. In fact, the “well spouse” is often in danger of a steeper decline than the more obviously ill partner.
And there is the emotional toll. As the well spouse becomes more a nurse and the ill spouse less of a contributing partner—especially with multiyear conditions such as dementia—conflicting emotions emerge: Anger, frustration, sadness, resentment, guilt. Partners also mention loneliness with decision making, and the disheartening grind of watching a loved one suffer.
How can you help?
- Problem solve together. Identify issues, note what needs to be done, and create action steps.
- Take action. Assist with practical tasks and get outside help.
- Provide a nonjudgmental ear. Name and validate feelings: “It’s natural to feel resentment (or ***). Anyone would.” Reassure your well parent that you are there for emotional support.
- Offer respite. The well spouse needs breaks! Plan or sponsor an activity. Remove barriers to taking time off.
- Facilitate doctor appointments. Make sure Dad is taken care of so Mom can go to the doctor, get needed lab tests. Maybe stop for a coffee before coming home.
- Promote resilience by discussing how the well partner has made it through other life challenges. Remind them they still have those inner qualities to draw upon.
- Support the ill partner to acknowledge positives. Celebrate anniversaries and birthdays with joy. Any expression of gratitude and love is a profound contribution, even just a happy comment about the day.
Dementia communication: Speaking
Nearly every type of dementia compromises the ability to process language. It’s harder for the affected person to grasp words, to comprehend their meaning, and to track what’s being said. Communication with your family member may seem a frustrating struggle. Still, aim for interactions that maintain a positive relationship.
Your emotional tone is key: Pay attention to your body language, gestures, facial expressions, tone of voice, and volume. What will linger for your relative is how they felt about the interaction more than what was said.
To help your relative, speak slowly, calmly, and patiently. Avoid long sentences, slang, or idioms (“Keep your eyes peeled”). Try to avoid comments that might leave your loved one feeling less-than or stupid.
- Don’t talk as if your relative is not there—for example, at the doctor’s office.
- Avoid correcting or arguing. Unless it creates danger, go along with their view when possible. Pointing out their deficits just engenders shame and mistrust.
- Keep stories or topics simple. They can’t follow a complicated plot.
- Avoid questions about recent events, such as “What did you do yesterday?” Focus instead on the far past and their feelings, as in “What did you used to do for fun in the winter?”
Informing or getting things done
- Do “with,” not “to” or “for.” To support cooperation, sit at the same eye level, make eye contact, touch or hold hands, and share what you would like them to do. They need to feel they still have control in their life.
- Offer binary choices: “yes/no” questions or two choices (“Would you like coffee or tea?”) rather than open-ended questions (“What would you like to drink?”). Consider offering your preferred option last. It’s often the one chosen.
- Visual cues are helpful. Show them the choices so they can point.
- Keep instructions simple, one step at a time.
Maximizing your resources
When we think of “resources,” as family caregivers we might think of money. Or time. But there is another resource we’re using every day that is often overlooked: Emotional energy.
Our emotions and mood contribute mightily to our ability to deal with challenges. When circumstances are difficult, it’s hard to generate enthusiasm or initiate projects. Truth is, even at a most challenging time, it’s likely there’s still something positive in your life. If you can focus there, you can kickstart your resilience and your capacity for addressing problems.
It isn’t that you need to don rose-colored glasses. But training your brain to realistically perceive the good experiences that exist—even on dog-wearying days—allows you to build an emotional reservoir. Like an emotional savings account.
To build your emotional reserves
- Acknowledge past coping strategies that were constructive. This probably isn’t the first time you have dealt with difficulties. How have you managed in the past? What can you use again now?
- Savor compliments received from others. Past or present, those around you have probably commented positively at one time or another.
- Consciously train yourself to notice what is going well now. No matter how small. It’s like people who train themselves to notice money on the sidewalk. They find coins and even paper bills that others overlook.
- Expand the experience. Take a moment to concentrate on the good thing. Don’t discount it to focus only on your worries. Stop and savor that positive. What physical sensations, what specific emotions, are associated? “See” the moment in your mind’s eye. The more you linger with it, the more lasting power it has.
- Name it. What is pleasant about it? What is unique about it as an experience? Which of your personal qualities does it highlight? Giving it particular meaning strengthens the positivity muscle in your brain. Journal about it for added staying power.
Drawing upon your savings account
When you next find yourself frustrated or perplexed, pause. Bring to mind a positive experience—perhaps a time when you received appreciation, felt accomplished, or exuded compassion. Use the emotional energy of that memory as the boost you need to find a new approach to the challenge at hand.