Many people with ALS maintain an amazingly upbeat attitude, but even the strongest people get down sometimes. If depression is becoming a concern, consider some of these strategies from experienced caregivers:
Provide meaningful work
When her brother, Michael, got ALS, Deb Stanfa of Cherry Hill, N.J., took over daily operation of his business. But she brings him work every day and takes him into the office occasionally. "This makes him want to wake up in the morning," she says.
Even someone who can't "work" still can contribute.
"Since their intellectual abilities are unscathed, they really need to be included in all family and medical decisions, even when they reach the point where speech is impossible," says Carolyn Mildenberger of Pendleton, Ore., who cared for her husband, Paul, until his death from ALS in 1997. "This requires patience and effort but is really worth it in terms of emotional stability. It helped Paul feel like he was alive and kicking and involved."
Watch for opportunities to share a loved one's talents
Helping others "pulls us out of ourselves," says Wendy Lustbader, author of Counting on Kindness (see review). Listening to a child practice spelling, helping a neighbor with tax returns or offering online gardening advice all are meaningful contributions.
Find special treats
Flowers, massage, music, funny movies and animals all are proven mood lifters. Mild exercise and sunlight also are important.
"A big hug and a kiss and a walk around the garden" is how Craig Keeley of Ocean City, N.J., responded on the rare occasions when his late wife, Meg, needed a boost.
Another caregiving strategy is to create a "sunshine basket," by saving cards and notes that can be perused when spirits are drooping.
When Mildenberger's husband became confined to bed, she took pictures of local events and posted them on his wall. "He loved it!" she says. "He got to see the progress on the new Wal-Mart, the new city hall, etc."
Deal with anxiety
"When someone yells or is rude, it often is to cover up their own anxiety," says Selma Kraft of Marina del Rey, Calif., a human services volunteer whose husband, Bernard, recently received an ALS diagnosis. Deal with the anxiety instead of taking it personally, she says.
For example, Keeley found that his wife's fear of choking was weighing on her mind, and a feeding tube was inserted rather early on, helping immensely.
Don't dwell, don't deny
Don't allow the person with ALS to dwell on what's been lost, but rather focus on what still is possible, caregivers say. At the same time, don't deny the reality of the situation.
Talking honestly about emotions and crying together ultimately can be the best mood lifter of all.