How does caregiver stress from my husband’s ALS affect me?

I'm starting to wonder if I've developed a so-called tolerance to stressful events

Kristin Neva avatar

by Kristin Neva |

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After years of living on the edge of life and death with my husband’s ALS, I sometimes wonder if my body has quit reacting to stress in a normal way.

Trying to squeeze in lunch before I ran to town for our 18-year-old daughter’s doctor appointment, I reheated leftover noodles with chicken and Alfredo sauce as soon as my husband, Todd, finished his session of physical therapy. Todd is paralyzed and on breathing support, so he needs my help with everything. It’s difficult to leave the house for an extended period of time, but we both felt it was important for me to be with our daughter. She was having an office procedure with local anesthesia, and I wanted to be there for moral support. After feeding Todd half of his noodles, I suggested that we cut lunch short.

“That’s fine,” Todd said. “I also need to use the bathroom before you leave.”

I was planning to take a few minutes for that, so I was still on time.

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After I helped him in the bathroom, I set him up on his computer and attached his noninvasive ventilator. With the additional air filling his lungs, he coughed weakly, and I could hear a rattle in his chest.

“Do I need to clear your lungs?”

“You better,” he said.

Not good timing. I pulled his wheelchair back, set the ventilator to a stronger setting, and performed several manual assist coughs by pressing on his abdomen.

“Good enough,” Todd said.

With five minutes to spare, I set him up on his computer and told him to call my mom if he needed help clearing his lungs again. I explained that she’d be 10 minutes away at work, except when she’d be picking up our son from school.

I made it to the appointment on time, and the doctor asked if I wanted to wait in the other room.

“I’ll stay,” I said.

“I just don’t want anyone fainting,” she said.

“I’ll be fine.” I have over a decade of dealing with all sorts of medical situations for my husband. It’s not that I don’t find these things stressful, but I’m used to stress.

The procedure took longer than I expected. I texted Todd that it was over, and he let me know that his lungs were filling with mucus again. After getting discharge instructions, I headed home as quickly as possible. I found Todd reclined back, and my mom had already begun clearing his lungs by pressing on his stomach from the side. I backed up his wheelchair and continued the process from in front of him to better leverage my weight against his abdomen. After several presses, we finally cleared the mucus.

“Thanks for saving my life again,” Todd said with a wry smile. It’s a frequent joke.

Chronic stress and cortisol

I recently listened to a 2019 episode of “The Jordan Harbinger Show Podcast” featuring Sarah Hill, an author and psychologist who wrote the book “This Is Your Brain on Birth Control.” She said that hormonal birth control messes up the cortisol response, but cortisol is necessary for us to adapt and learn: “It dumps fat and sugar into our bloodstream so that way if we need to make a fast getaway from like lions or tigers that are chasing us, we can.” Cortisol helps our bodies cope with stressful situations, but women on the pill don’t have this help.

“This sort of a pattern of not having a stress hormone response to something stressful is something that we usually only see in the context of chronic stress,” Hill said. People with chronic stress quit having a normal stress response because their bodies can’t keep taking energy away from basic bodily functions indefinitely.

I found the whole discussion on the importance of cortisol fascinating, but especially the sidebar about chronic stress. I’m not on birth control, but I’ve often wondered how the stress I’ve lived with since Todd was diagnosed with ALS has affected my brain. For years, I’ve lived in a state of hypervigilance, ready to help Todd with little things like adjusting his arm or scratching an itch as well as life-threatening moments when he struggles to cough and breathe.

Todd wondered if I don’t feel heightened stress during the life-threatening moments because I have those moments under control. Thus far, I’ve managed to clear his lungs every time he’s had problems. Sometimes I recruit help from a stronger friend in our neighborhood. Perhaps my track record is a factor in my detached, businesslike response to these recurring crises, but I think more so, I recognize that much of life is out of my control.

I’m on edge, knowing the tiger is lurking, but I’m unable to escape him, and I can only do what I can do.

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, and are intended to spark discussion about issues pertaining to ALS.


Carol Goodnight avatar

Carol Goodnight

YES ! This theory is on the money. I had been caring for my mother in our home for about six years before my husband was diagnosed. She had near death events and the long recovery periods from this every two years. I became concerned with drastic symptoms in Jim. Covid had just hit, his doctor was compromised and out of office. Visits were delayed a year until after a chest x-ray and referral to oncology he was misdiagnosed with lung cancer and preparing for surgery when they discovered that error and released him. I thought we had our miracle but of course the symptoms remained so we pursued orthopedic. Almost a year later of added torture with PT that was not helping the oncologist called for a follow up. The symptoms had nagged him and he referred us to neurology. Finally in the door with neurosurgery then to general neurology until ALS for a definitive answer at last. I made a decision to move the three of us to another state near an old established ALS clinic and Jim's family. Unfortunately after all that upheaval he just went into a rapid decline when the FTD kicked in and was exposed at a rehab to C.diff and passed away from us just eight months from the diagnosis. This was traumatizing but I still had my 93yo demented mother to care for so I just kept going through the routine I had known so well with her. She suddenly just slipped away within six months of Jim; underlying condition they surmised, probably metastatic cancer. Over all these months and years I was the "fixer", (see it, research it, get the treaters, manage the meds, etc). I plowed through emergencies like a machine. Within two months of this double whammy I became like jello and have yet to regain my normal faculties. I had some anxiety before but this is ptsd. I had also lost weight through the ordeals but suddenly gained 17lbs. Cortisol! why can't they study it more, is it because it is a female issue?


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