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Helpful tips for family caregivers
February/March 2021 Print
"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.
Conversation tips
- 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.
Age-related macular degeneration
Age-related macular degeneration (AMD) is a very common condition affecting the retina of the eye. It causes blurry vision and dark spots in the center of the visual field. This makes it challenging to read, drive, and recognize faces. Although AMD typically gets worse over time, it does not lead to total blindness. It is, however, a leading cause of legal blindness (vision of 20/200 rather than 20/20).
Peripheral vision. AMD permanently reduces vision in the direct line of sight. To compensate, your loved one can learn to rely on peripheral vision (to the side). We are all used to peering directly at an object to see it better. With practice, though, many with AMD adapt to looking from the side—even to read or watch TV.
Ways to slow the progression
Several lifestyle changes have proven effective. You cannot make your loved one adopt them. But you can ask if they would like support and how best you can help.
- Stop smoking. Research shows this is one of the best ways to slow progression. Reducing or eliminating second-hand smoke is also quite effective.
- Eat green leafy vegetables daily and fish twice a week. Spinach, kale, and collards provide antioxidants. Salmon, sardines, mackerel, and tuna reduce inflammation.
- Take the AREDS supplements. A study by the National Eye Institute (Age-Related Eye Disease Study) revealed key daily supplements that slowed—and in some cases halted—AMD. Specifically, 500 mg of vitamin C, 400 iu of vitamin E, 10 mg lutein, 2 mg zeaxanthin, 80 mg zinc, 2 mg copper. Check with the ophthalmologist for reliable sources of this combination.
- Reduce simple sugars and starches. Best to avoid those that go directly to the bloodstream: Candy, soda, potatoes, white rice, and baked goods with white flour. With the exception of watermelon, fruits are fine. Their sugars take a while to digest.
