August is National Wellness Month, a time to focus on self-care, managing stress and promoting healthy routines. For people with ALS and their families, all of these can be challenging, but they are attainable. The national ALS Association has been running a series on its blog this month exploring the many facets of wellness and the ALS community.
In that spirit, we asked our friend Scott Liniger to share how approached self-care and stress management when he was a caregiver to his partner Tammy Hardy, particularly how he approached his mental well-being.
“It can get frustrating (and dangerous) if you let yourself get caught up in despair or hopelessness. It’s important to have an outlet—be it talking to someone, exercising, listening to music—whatever that is,” says Scott. “If you’re not careful, it could turn to bitterness, and spiral downward from there. I recall only once or twice approaching that feeling. But I worked hard to back away from that. It’s easy to feel guilty because you’re not the patient. Or blame the patient. That’s when you need to step back, take a breath, do yoga, whatever.”
It is not uncommon for caregivers to feel a sense of guilt when they focus on their own needs. Often in their minds, an hour spent on something for themselves is time that could have be devoted to the person they are caring for. But in reality, taking time for self-care makes a caregiver more able to provide the care their loved one needs.
“One of the things I preach now is making sure you do take care of yourself. If you’re sick or absolutely worn down, it doesn’t help either of you,” says Scott. “Go walk the dog (that was one of the things I did, and we did have the best dog ever), play your guitar for a bit, hit the treadmill, knit a cap… it’s ok to take a breath from time to time, and in fact is absolutely critical for both of you.”
It also helps to give yourself some grace for when things don’t go exactly as planned.
“From a ‘Captain Obvious’ perspective, control the things you can control, and work very hard not to worry about the things you can’t,” Scott says. “Turns out (the list of things you can’t control) is pretty big, but it is more manageable if you’ve covered the former.”
Scott also followed the old idiom that an ounce of prevention is worth a pound of cure.
“One of the big changes I undertook was being more organized household-wise. Because if something wasn’t in order, it was going to impact us later,” he says. “Having things stocked and available, making sure the oft-used utensils were clean, getting the coffee prepped, and on and on. Having this order made the unforeseen a bit easier to handle.”
And caregivers should not be afraid to ask for help when they need it. For many, ALS-specific support groups can offer a place where they can share some of their challenges and fears. But it is important to seek help if you need it.
“In the do as I say not as I did category, it probably is wise to seek out counseling or other types of mental health help,” Scott says. “I thought I was prepared, I knew the Lou Gehrig story, and there’s not a surprise ending here. However, I found myself a tad more depressed than I anticipated, and that hung with me for a while. I slowly crawled out of it; I may have saved myself some grief if I had sought help.”
It goes without saying, but a focus on wellness and self-care isn’t just for one month. Your local Care Service coordinator can help you find resources or support. It takes all of us, together, to face ALS.