A SUPER-powered WP Engine Atlas Test Site

Joe&#039;s Atlas Experimentation Site

After years of living on the edge of life and death with my husband’s <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, I sometimes wonder if my body has quit reacting to <a href="https://alsnewstoday.com/columns/breathe-stress-relax/">stress</a> 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 <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">both felt it was important</a> 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.
[recommended-reading id=89616]
After I helped him in the bathroom, I set him up on his computer and attached his <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilator</a>. 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&#8217;d be 10 minutes away at work, except when she&#8217;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.
<h3>Chronic stress and cortisol</h3>
I recently listened to a 2019 episode of &#8220;<a href="https://www.jordanharbinger.com/sarah-hill-this-is-your-brain-on-birth-control/">The Jordan Harbinger Show Podcast</a>&#8221; featuring Sarah Hill, an author and psychologist who wrote the book &#8220;<a href="https://www.sarahehill.com/your-brain-on-birth-control/">This Is Your Brain on Birth Control</a>.&#8221; 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&#8217;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&#8217;ve often wondered how the stress I’ve lived with since Todd was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> 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.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

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

“The essence of trauma is powerlessness.”
This quote from Christian trauma therapist <a href="https://www.colleenramserlpc.com/about" rel="nofollow">Colleen Ramser</a> grabbed my attention, because I often feel powerless as a caregiver for my husband, Todd, who is paralyzed by <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
We’ve been having a rough week. Todd’s shower aide called in sick a week ago. The home health provider had already cut us down to one shower a week because of staffing issues, so if I didn&#8217;t pick up the slack, Todd would go two weeks without a thorough scrubbing. His nightly bed baths aren&#8217;t enough to keep him from getting itchy. To help, I set up his portable tub on the bathroom floor, filled it with water, and lowered him into it with his overhead lift. I scrubbed him the best I could, but I have physical limitations, which is why we need the shower aide to begin with.
The next day, I got sick with a fever. All I wanted to do was lie in bed and sleep, but Todd still needed care. I had to keep at it, hoping he wouldn’t catch my bug.
At times like that, I feel I lack agency because I can’t call in and take a sick day.
[recommended-reading id=84115]
<h3>How we try to get by</h3>
I&#8217;m on Day 5 of this bug, and I&#8217;m still in rough shape. After making Todd breakfast and helping him in the bathroom, I gave him his <a href="https://alsnewstoday.com/approved-treatments-for-als/">medications</a> through his <a href="https://www.youtube.com/watch?v=BHf0N0Bup1Q">feeding tube</a> and cleaned the stoma, the hole in his abdomen for the tube. The stoma was red and irritated, and it bled more than normal. Todd complained that it hurt and that his skin was itchy and uncomfortable, especially on his head and face.
“Didn’t the bath help?&#8221; I asked.
“Yes, but you didn’t scrub that much,” he replied. “After I soaked in the water, all that stuff stayed on me, and my head and face didn&#8217;t get washed that well.”
I felt bad that he didn&#8217;t get adequately bathed, and I&#8217;m frustrated that our local home health agencies are short-staffed. I cried, feeling powerless and unappreciated.
I went to my room to lie down, and after a while I received a text from Todd apologizing and telling me that he loves me.
Todd is also powerless. He’s completely dependent on me and other caregivers. He doesn’t like to be a burden, especially when I’m sick. Over the past week, he’s tried to tough it out so I can rest, putting up with aching bones, joints, and an uncomfortable mask for his <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilator</a>. He’s also been even more bored than normal, as we’ve been trying to keep him isolated in his office except for when I absolutely need to help him.
It’s hard on Todd and it’s hard on me. I can’t provide all the care he needs.
We need a change to the healthcare system in the United States. People with ALS in many other countries can get much more support than the few hours a week that many of us in the <a href="https://alsnewstoday.com/columns/people-with-als-support-medicare-power-wheelchair/">Medicare system</a> are able to access. With all the money our country spends on so many things, why does it not provide more support for people who are paralyzed?
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, 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.

Feeling sick and powerless as an ALS caregiver

A few weeks ago, I was catching up with a friend of mine. Among other topics, we discussed what I might do for work after my husband, Todd, is gone. He has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, is paralyzed, and needs <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilation</a>. His lung function is quite poor, and I could lose him at any time if he happens to catch a bug or his lungs inexplicably fill up. I could lose him tomorrow, or he could have years.
When he was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a> more than 13 years ago, I&#8217;d already left the workforce to stay home with <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">our two children</a> — our then 4-year-old daughter and 9-month-old son. As the kids grew and gained independence, Todd’s health declined, and he became dependent on me as his full-time caregiver. At this point, I can&#8217;t return to the workforce because it&#8217;d cost more to hire caregivers for Todd than I could make working. But when Todd is gone, I’ll need to find a job.
It’s overwhelming to think about reentering the workforce, having been out of it for so many years. I’ve thought about different career paths, such as working at the local university or going back to college with an accelerated certification program to teach elementary school, but I can’t make plans when I don’t know the timing.
[recommended-reading id=86900]
My friend encouraged me. She told me she could introduce me to people at the university because her husband works there. Later that day, she sent me an email asking if it was morbid to consider updating my résumé. She thought I could draft an impressive list if I were to include all my experiences dealing with my husband’s ALS over the last decade.
I thought about all that I&#8217;d learned by caring for Todd and navigating our healthcare system, and then summarized my experience as a caregiver and advocate:
<ul>
<li>Recruited and trained a care team</li>
<li>Secured medical equipment and resources</li>
<li><a href="https://alsnewstoday.com/columns/medicare-guessing-game-bureaucracy-rights-dme-hha/">Researched Medicare guidelines</a> and petitioned upper management of healthcare providers when allowable equipment and resources were not being provided</li>
<li><a href="https://alsnewstoday.com/columns/learning-new-skills-didnt-need-feeding-tube/">Learned caregiving skills</a>, such as handling a feeding tube, using patient-lift devices, and administering <a href="https://www.youtube.com/watch?v=ITcMaevMO04">lifesaving manual cough assists</a></li>
</ul>
My friend also wondered if Todd would want to help me with my résumé. I demured. It was one thing for she and I to brainstorm, but I hesitated to ask Todd to enter that headspace.
A week later, Todd was having trouble breathing after a low-key day. His diaphragm and chest muscles had been getting tired on days when he&#8217;d spent a lot of time visiting with someone, but his having trouble on a day without much activity was alarming.
He said he felt like his lungs had gotten significantly weaker, and he wouldn’t be surprised if he had less than two years left. I told him to try to hold on until after our eighth grade son graduates from high school.
I started to cry, and then forced a smile because crying gives me a headache.
“It will be harder, and then it will be easier,” Todd said.
My tears flowed, and after I composed myself I fixated again on life after Todd, including finding a job. I decided to ask him for help. “Would it be weird for you to help me with my résumé?” I asked.
“Not at all,” he replied. “It would be weird to help you create a <a href="https://tinder.com/" rel="nofollow">Tinder</a> profile.”
I emailed him my résumé, listing the dates of my role as ALS caregiver and advocate as 2010-2028.
Todd worked on punching up my résumé and emailed it back. “I was glad to see you gave me a few more years,” he said.
I’m not counting him out.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Preparing for the future after my role as an ALS spouse and caregiver

My brothers-in-law made me an incredibly kind offer while I was <a href="https://www.als.org/navigating-als/for-caregivers">caregiving</a> for my late husband, Jeff, as he was <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>. They offered to spend a long weekend in January caring for him at our home while I went on a getaway. They wanted to fly me to sunny and warm Florida, far from the winter cold of Maryland. A beachfront hotel room would be reserved, allowing me to relax and get some sunshine. This idea was generous and personal — they knew I loved travel and warm weather and that I needed some rest.
I knew I was truly exhausted when I declined their thoughtful offer.
I welcomed the idea of taking some downtime, but getting on an airplane sounded tiring. Instead, we reached a compromise: They’d still come for the weekend, but I&#8217;d simply pack up my dog, Rudder, and drive 90 minutes for a stay at a comfortable oceanfront hotel in Delaware.
That weekend, Rudder and I walked each morning and evening on the cold, empty beaches. We enjoyed the free hotel breakfasts and binged on true crime television. I slept in each morning, napped every afternoon, and went to bed early. To this day, I remember it as one of the most peaceful weekends I’ve ever had. Though the schedule was unconventional, I recognized that I was taking care of myself.
[recommended-reading id=82931]
<h3>A new understanding of self-care</h3>
If you’d asked me before <a href="https://alsnewstoday.com/what-is-als/">ALS</a> entered our family’s life what <a href="https://www.psychologytoday.com/us/blog/click-here-happiness/201812/self-care-12-ways-take-better-care-yourself">self-care</a> looked like, I’d have responded by talking about spa days, manicures, and weekend brunches with friends. I’m embarrassed to say it now, but self-care had the connotation of decadence. Self-care before ALS meant spoiling myself and paying closer attention to my appearance and comfort.
Being a caregiver, however, taught me about self-care through a completely different lens — a much healthier one, informed by meaning and perspective.
Taking care of Jeff was the most profound and rewarding experience of my life. It was, above all else, an honor. Yet at the same time, it was terrifying and exhausting on a level that I never could have understood before ALS. <a href="https://iamals.org/get-help/caregivers-start-here/">Caregiving for a loved one with ALS</a> meant sleepless nights that bled into restless days, scary and unexpected medical crises, and the relentless progression of the disease. It meant that a solution that worked yesterday might not work today.
Beyond the physical aspects of caregiving, there was also a constant awareness of Jeff’s faster-than-average progression and the emotional toll it took on both of us. Our days at the <a href="https://www.youralsguide.com/als-clinics.html">ALS clinic</a>, for example, were a mixed blessing of getting the excellent care he needed juxtaposed with receiving unwelcome news about his diminishing respiratory capacity or decreased physical function. I now understand that we were living with ongoing losses, trauma, and hypervigilance, but it was difficult for me to see it at the time. It is hard to take care of oneself, much less anyone else, in those circumstances — but caregivers must find a way.
Well-meaning friends would remind me to look after myself as I cared for Jeff. I’d smile wanly and agree, but the truth is that finding the time or energy for self-care while caregiving is difficult and, to me, sometimes felt selfish. Plus, as was the case with my weekend getaway, some of the things that I remembered as self-care — travel and sunshine — didn’t hold the appeal they once did.
What I learned that weekend, and in the time since, is that our definitions of self-care can, and should, change depending on our stage of life.
Self-care in caregiving meant striving to get uninterrupted sleep when I could and making sure that I ate meals and got adequate nutrition. Most days I fell short, but I was at my best for Jeff when I could accomplish these goals. All the same, I struggled with guilt when I took care of myself.
In early grief, self-care meant lots of tears, lots of sleep, and taking time for reflection. It meant giving myself grace for my foggy brain, poor memory, and inability to concentrate. It meant easing up on a tendency to be hard on myself, and asking myself how I’d treat a friend going through the same thing.
Today, self-care is about balance. It’s taking care of my health and body so that it can sustain me for as long as possible. It’s about recognizing when I feel overwhelmed and making adjustments to my schedule when that happens. And it’s about honoring how our family’s experience with ALS shaped me into the person I am today — hopefully someone with a healthy perspective about what’s important in life, including taking care of myself — however that looks at the time.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Being an ALS caregiver changed my understanding of self-care

I don’t like asking for help, but when it’s for my husband, I’ll do it.
Last Friday, after getting <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">my kids</a> out the door for school, they quickly returned to the house. “The car has a flat tire,” my daughter announced.
“I’ll drive you,&#8221; I responded. &#8220;Get in the van, and I’ll be out there in a minute after I check on Dad.”
My husband, Todd, is paralyzed due to <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, so he can&#8217;t turn himself in bed. He was still sleeping when I checked on him, and I&#8217;d just turned him, so he’d be OK for the time it&#8217;d take me to drive to town and back. I took the kids to school in Todd’s <a href="https://www.youtube.com/watch?v=AsiD_rX5iXw&amp;list=PLP7XsrURo2WC0a9GI2RcCLzwT9yeQNE6R">accessible van</a>, and on the way home, I called the tire shop to make an appointment that afternoon for my car. When I returned home, Todd called me right away.
[recommended-reading id=84043]
“Were you calling me for long?” I asked.
“I called you about five minutes ago, but you didn’t answer,&#8221; he said. &#8220;And now I just heard you come in.”
Sometimes he wakes in an uncomfortable position and gets anxious if he doesn’t know where I am. But that morning he was OK waiting for a few minutes. I told Todd what had happened as I adjusted his position, and then he slept for another hour.
Then I got him out of bed and made his breakfast. As Todd sipped his coffee through a straw, I looked at my calendar and remembered my son had a dentist appointment. I started stressing over the logistics of the day. Todd had a shower at 11 a.m., I had an appointment for my car at 1 p.m., and my son had a dentist appointment at 2:30. Normally, it wouldn&#8217;t be an issue because my mom is my backup, but she was out of town.
While Todd’s home health aide gave him a shower, I found an air compressor in my mom’s garage and managed to inflate the tire.
After Todd’s shower, I gave him his <a href="https://alsnewstoday.com/als-treatment/">medications</a> through his <a href="https://www.youtube.com/watch?v=BHf0N0Bup1Q&amp;t=4s">feeding tube</a>. It was already noon, so I suggested that I feed him a quick lunch, but he wasn’t hungry yet. I explained that I might not have time to come home and feed him between getting the car fixed and taking our son to the dentist. After the dentist, I would need to pick up my daughter from school, so I might not be able to get home until 4 p.m.
“I’ll be fine,” Todd said. “Just get the tire repaired and then take Isaac to the dentist.”
I didn’t like the idea of Todd missing lunch, and he might need to use the bathroom, so I decided to phone a friend who lived near the tire shop. She was happy to give me a ride home and even visited with us while I fed Todd lunch. It was a good thing I called her, because otherwise I would&#8217;ve been stuck in town. The tire had a nail in the sidewall and wasn&#8217;t repairable, and a replacement wasn’t available until the next week.
Thinking back on the morning, I realized that I&#8217;d decided to ask for help when it became about <a href="https://alsnewstoday.com/living-with-als-2/">Todd’s quality of life</a>.
I’m reluctant to ask for help, but when I worked for a nonprofit with an after-school program, recruiting volunteer tutors was part of my job. Helping kids was a noble cause, and no one expected me to tutor all of the neighborhood kids on my own. And now my noble cause, like so many other spouse caregivers, is to provide quality care for my husband. But no one should expect <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregivers to be on duty 24/7</a>.
My mother helps us in many ways, and we’ve found others willing to help with various things, too. I recruit nighttime caregivers, and we depend on financial gifts to pay them a fair wage. With all that, a lot still falls on my shoulders, and sometimes I need to phone a friend.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, 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.

Getting over my reluctance to ask for help as an ALS caregiver

Last week, I was in a grocery store and noticed another shopper had an occasional cough and wasn’t covering his mouth. I gave him wide berth as I gathered the items I needed. When I had found everything on my list, I made a beeline for the checkout line, and wouldn’t you know, he stood in line right behind me.
I inched forward, trying to keep space between us and hoping for the best. Maybe it was spring allergies.
Perhaps the only good thing about <a href="https://alsnewstoday.com/columns/7-ways-als-life-is-similar-pandemic/">life during the pandemic</a> — at least something that I was grateful for — was that it was not socially acceptable to be out and about with a cough. However, it seems like life is returning to normal, so I’m hypervigilant. More than once, I’ve been in line at the grocery store when I’ve observed a cashier with a cough. I’ve gotten out of line “to get one more thing” and then queued at a different register. And I’m fond of self-checkouts for the same reason.
[recommended-reading id=82904]
I have to stay healthy because I need to take care of my husband, Todd, who is paralyzed from <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. He is <a href="https://alsnewstoday.com/columns/stressful-night-dealing-husbands-breathing-difficulties/">unable to cough up mucus from his lungs</a> due to ALS having weakened his diaphragm and rib muscles. His last few colds have been scary. I’ve needed to use a cough assist machine and <a href="https://www.youtube.com/watch?v=ITcMaevMO04">manual assist coughs</a>. He took medication to thin the secretions, and I held my breath, hoping he’d pull through and it wouldn’t turn into pneumonia.
We take many precautions because any virus is a serious risk for Todd. Friends and family know not to visit if they are sick.
We ask his <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">night caregivers</a> to cancel, even on short notice, if they have any signs of illness. Sometimes a caregiver will text me to let me know she had exposure to an illness. Todd and I discuss these situations. If the exposure was minimal, we have the caregiver come, as it doesn&#8217;t seem any more risky than hanging out with <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">our kids</a> who are exposed to viruses at school every day. If a bug is circulating in their home, then we cancel.
If our children catch a bug, Todd quarantines in his office and bedroom, and I bring meals to him.
However, we want to live life as normally as possible, especially for the kids. They attend school and other activities. I try to get out, too, for my own mental health. Even a trip to the grocery store makes me feel less isolated because I often run into people I know in our small town. Balancing risk with living life is an ongoing challenge.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

As an ALS caregiver, I’m constantly evaluating cold, flu, and other risks

My husband’s nose wouldn’t quit bleeding this past Sunday morning, preventing him from using his <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilator</a>. Todd is paralyzed from <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, so he sat in his <a href="https://www.youtube.com/watch?v=lCFNl7GXivw">power wheelchair</a> in front of the bathroom sink as I went to work.
I packed his nostril with wadded up toilet paper and iced the bridge of his nose. I draped bath towels on his chest, and swapped them out each time I replaced the wad of saturated toilet paper.
Todd has needed breathing support for the last year, and he&#8217;s had <a href="https://www.mayoclinic.org/diseases-conditions/sleep-apnea/multimedia/cpap-masks/sls-20076986?s=2">nasal pillows</a> strapped to his nose and air blowing into his lungs nearly 24/7. His nasal passage gets dry, and he used to have his nighttime <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregivers</a> swab his nostrils with a petroleum-based moisturizer. But he realized that it caused his nasal pillows to break down and become uncomfortable. He had been making do without moisturizing his nostrils for the past couple weeks, and his nose had been running probably due to spring allergies after some warm weather and snow melt. But winter quickly returned, and the air was dry.
[recommended-reading id=82617]
<h3>Finding solutions</h3>
After a while, Todd’s nose finally stopped bleeding. I set Todd up on <a href="https://www.youtube.com/watch?v=v2wuJPV3--E">his computer</a> without his ventilator and started a humidifier in his office. I called our son, Isaac, to watch an online church service with his dad, but before they could start, Todd’s nose started to bleed again.
I told Isaac never mind, and Todd and I headed to the bathroom for round two.
When it subsided, I got him set up on his computer again without his ventilator and with toilet paper shoved into one of his nostrils, and he started to watch the sermon with Isaac.
I felt on edge. I <a href="https://www.cpap.com/blog/nasal-dryness-cpap/">read information online</a> about nosebleeds and noninvasive ventilators, looking for solutions. It’s a common problem, as the air from the ventilator can dry out the nostrils and sinuses. Todd already has a heated humidifier for his ventilator, and I read that saline spray also helps. I ordered <a href="https://www.amazon.com/RespLabs-CPAP-Chap-Face-Cream/dp/B01IOE876W?th=1">a couple</a> of <a href="https://www.amazon.com/Neilmed-Nasogel-Dry-Noses-Oz/dp/B000W8UNSY/ref=asc_df_B000W8UNSY/?tag=hyprod-20&amp;linkCode=df0&amp;hvadid=309813749887&amp;hvpos=&amp;hvnetw=g&amp;hvrand=2497174629858980171&amp;hvpone=&amp;hvptwo=&amp;hvqmt=&amp;hvdev=m&amp;hvdvcmdl=&amp;hvlocint=&amp;hvlocphy=9017742&amp;hvtargid=pla-406644712975&amp;th=1">non-petroleum-based moisturizers</a> that are compatible with CPAP masks.
I went to clean the kitchen, but then Isaac called for me: “Dad needs help again.” Back for round three.
Todd’s nose finally stopped bleeding around noon. I removed the wad of toilet paper and sprayed his nostrils with saline. I set Todd up again at his computer, this time with his ventilator on.
As I washed the dishes, I looked longingly out the window. The sky was blue and the sun was shining. It was 30 degrees, a perfect day for Isaac and me to go skiing, but I couldn’t leave Todd — not until we knew he was out of the woods. What would happen if his nose started bleeding again while his noninvasive ventilator pushed air into his lungs? My mom, who lives next door and is usually my backup, was out of town. But I needed to find a way to let go of the stress.
I texted one of our night caregivers, a retired nurse, to see if we could hire her to come sit with Todd for a couple hours. She was available, and she arrived within the hour.
I told her about the morning’s ordeal and how I had used toilet paper to pack Todd’s nose. She said that even paper towels would be better because bits of toilet paper could break off and be hard to remove. She dug in the bathroom cabinet and found cotton balls, which is ideal packing material. I felt relieved that Todd was in good hands.
On the trail, I skied down a hill, and the wind blew away the pressure of the morning.
<figure id="attachment_82977" aria-describedby="caption-attachment-82977" style="width: 584px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-82977" src="https://alsnewstoday.com/wp-content/uploads/2023/03/Joyful-Sorrow-Skiing-2.jpg" alt="A clear, blue sky sits over bare trees and a snow-packed cross-country ski trail in the woods. " width="584" height="438" data-wp-pid="82977" /><figcaption id="caption-attachment-82977" class="wp-caption-text">On the ski trail. (Photo by Kristin Neva)</figcaption></figure>
When Isaac and I returned home, everything was fine. I thanked Todd’s nurse for coming.
“I’m glad I could,&#8221; she said. “Self-care is so important. Say, hope you weren’t offended that I suggested you use cotton balls.”
“Not at all. Whenever a crisis happens, adrenaline kicks in, and I tackle the situation the best I can. But I’m not a professional, and I’m learning as we go.”
“You do so much. You’re a nurse. A respiratory therapist,&#8221; she said. &#8220;If I needed help, I would have you be my nurse.”
I felt seen. I have no medical training, and managing ALS care is complex.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: als caregiver