We Need Allies to Fight This War

We Need Allies to Fight This War
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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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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.

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5 comments

  1. Linda Gundersen says:

    Thank you for your words. you describe my feelings perfectly. love when people say you have to take care of yourself. how do you support yourself? Your post makes me feel a little less alone.

  2. fran lancaster says:

    What a great analogy. I watched my husband slowly lose his battle over 6 long, frightening years and I felt like I was in a war. In fact I used the term shell-shocked to describe myself when it was all over. I felt like I had PTSD. This disease leaves many casualties, the most tragic being the ALS victim themselves. Many days felt like torture for both my husband, and in a smaller way, me. I could white-knuckle my way through it, knowing I would make it out alive, although battered and broken. He could not. My heart breaks for all those affected by this relentless battle.

  3. Thanks for these poignant and personal reflections.

    As a patient in long and steady decline, I have shifted my focus away from my condition. Increasingly, I seek to understand the impacts – now and in the future – to my caregiver. Through the shared stories, it is possible to see what lies ahead. At some point, a decision has to be made. Do I stay or do I go?

    I am significantly older than my wife and I don’t wish for years of intensive care to be followed by years of financial pain. That is what lies behind door number one. Door number two feels like the expedient exit. Alas, there are only a few states that allow this option. The same government that limits our care options also forces us to live beyond the arc of personal choice.

    In a perfect world, we should have resources to live at home safely while not burdening our caregivers to the point of breakdown. On the other hand, we also should be allowed to join with our loved ones to make the “other” choice.

    ALS seems to take away choice. This is one that should remain.

    • Lori Moore says:

      I am too wondering how debilitating I will let this progress; I’m not afraid to die; I am afraid to live w/out my personality, smile, not putting my so & 3 young grandchildren thru watching a young , fun Me, turn into something scary & no longer me.
      Lori moore

  4. Robert says:

    My name is Robert and I have MND/ ALS. I have been battling with it now for five years watching its progress. I can emphasise with the person who has to support the other .

    We too battle day in and day out with services for simple things.

    I believe there is a cure out there but it’s not financially viable for the big pharmaceutical companies to make any money. I also believe, if this disease was passed by human to human, the governments of the world and the pharmaceutical companies would have a cure within weeks.

    I know my wife worries and cries about it but doesn’t show it to anyone not even me. She wants to give up work to do more for me but I have told her to carry on working, as I feel that at least she has a distraction for some part of the day

    All we can do is sits and waits like many other people for the end to come, hoping that it is a peaceful and painless end

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