In deepest winter, most Earth creatures are quiet and withdrawn, wisely conserving their energy for the months ahead. Not so the human creature, which scurries through December like a frantic chicken squawking, “So much to do! So much to do!”
The holiday season plops a big load of extra stress on top of the regular stresses of life with ALS. Many of these stresses are physical: shopping, travel, decorating, etc. Other stresses are emotional: the poignancy of each holiday, tensions among family members, an inner urge to “do it all” in spite of circumstances.
Caregivers — whose daily mantra should be “I must take care of myself so I can take care of my loved one” — must carefully manage their energy during this energy-burning time of year. Here are some stress-busting tips from caregiving experts:
“Write down everything you want to do, then go back and star the most important things. If you don’t get to the other things, you don’t,” says Karen Toennis of Kingwood, Texas, caregiver to her husband, Michael, since he received an ALS diagnosis in 1993. For Toennis, decorating the Christmas tree is “number one. It may take me three days to do, but I don’t pressure myself. I do what I can.”
Avoid the mall
Shopping online or via catalog has many advantages. It saves time and energy. It allows the person with ALS to be actively involved or to shop independently. And it keeps both of you away from large crowds of sneezing, coughing, inconsiderate people.
Avoid the doctor
Toennis doesn’t schedule any doctor appointments from mid-November until after New Year’s. “It wears you out for the day, and it’s one more thing that takes away from the holidays. Plus, you get to avoid the doctor’s office when everybody else is sick, which keeps you healthy.”
Tell the sugarplums to stop dancing
Sweet treats make you feel more tired once the sugar high wears off — meaning you reach for another cookie to rev back up. Instead, try to balance high-sugar treats with healthier choices, advises Gary Barg, author of The Fearless Caregiver and editor-in-chief of Today’s Caregiver Magazine. If you’re deluged with Christmas cookies, package some up and give them to others.
Stay in the present
Focusing on the thought that this may be your last holiday season together can cause depression and more stress. Instead, focus on the fact that you’re together now.
“We just say this is a great Christmas, we’re together and we enjoy it without worrying about whether there will be another one,” Toennis says. She adds that in the first few years after diagnosis, such worrying is normal and “part of the process you have to go through. Just don’t dwell on it.”
Put resentments on hold
Family conflict is a “holiday tradition” for many people. Caregivers may resent family members who aren’t helping out.
The Family Caregiver Alliance (FCA) (www.caregiver.org) advises not bringing up these issues during the holidays. Instead, try to talk to family members in advance of the season, or else resolve to “put those feelings on hold” and deal with them in January, FCA advises.
Ask for help
Family, friends and neighbors often wonder how they can help or what gift would make your caregiving life easier. Don’t wait to be asked — tell ‘em.
“I’ve found that people don’t always know what to do and they’re waiting for you to ask,” Toennis says. “You find out just how wonderful people are.”