We Need Allies to Fight This War

My son pointed to a plastic army man on the ottoman. “That guy is a sniper,” he said. “He’s taking everyone out.” He placed a soldier on top of others on the living room floor. “This army is using dead bodies to build a wall. In war, you have to use all possible resources.”

There’s truth in that. We’ve been in a war with ALS, always aware of my husband’s impending death as I fight alongside him. We’re using every resource we have to survive. There is constant stress. There is trauma.

Todd and I were drafted in 2010 with his diagnosis. ALS first took his ability to use his arms. It then weakened his legs, and he began to fall. He once fell and smacked his face on a sidewalk. It was scary for both of us. Things got better when he began using a wheelchair, but then he had difficulty turning in bed. He couldn’t get comfortable.

After putting Todd in bed, I’d lie down, knowing I was in for a long night. I had trouble falling back asleep after he woke me, not knowing if he would need me again in five minutes or an hour. Under the pressure of 24-hour caregiving and being unable to get uninterrupted sleep, I was in a bad place. But I soldiered on for a couple of years. Eventually, we hired nighttime caregivers and, again, things got better.

But when a caregiver cancels, I feel anxious and sometimes my hands start shaking. My body remembers that time of chronic sleep deprivation.

Many of the resources I find for dealing with trauma are for those who are living on the other side of a tragic event. My issue is not post-traumatic stress, because I’m not past the trauma. I’m still on the front lines with chronic stress. When Todd’s lungs fill with fluid, or he aspirates or chokes on food, it’s distressing for both of us. I step in to clear his airway, and he thanks me for saving his life.

I try to stay strong in front of him, and especially in front of the kids. But I cry by myself.

Laments from other caregivers on online forums say things like, “I don’t know if I’m going to make it.” Some days I don’t know, either. Our loved ones will be casualties no matter what we do. We’re just trying to get enough resources to make them comfortable and allow us to survive.

We should have allies in this war against ALS, but it seems we end up fighting our durable medical equipment providers and home health agencies for resources. But it’s not their war — not really. They’re just mercenaries, and they’re not going to do what they don’t get paid to do.

Medicare and insurance companies like to see results. They prioritize reimbursements where the battles can be won, paying for drugs that keep people alive or therapies that reverse conditions. Theoretically, Medicare allows maintenance therapy and up to 28 hours per week of in-home care, but it doesn’t pay for nearly that much.

The healthcare system in the United States is inadequate to meet the needs of those with ALS, so we get scrappy. We recruit volunteers to join the war effort. We raise funds to purchase equipment and hire caregiving soldiers.

ALS has been winning the war, but now some people with ALS have had access to a new treatment. We use all possible resources, hoping we can hold on until that weapon arrives on our front.

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