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Our family had another close call recently that caused us to our reexamine our methods of emergency communication.
Due to <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">dependent on noninvasive ventilation</a> to breathe and to talk. Without his ventilator, if he tries to talk too loudly or too much, his lungs lose tidal volume and he eventually stops breathing altogether.
We have <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregivers</a> on most nights so that I can get uninterrupted sleep for six hours, and then I take care of Todd during the other 18 hours each day. When the caregiver leaves at 5 a.m., she opens Todd&#8217;s bedroom door leading to the hallway so that he can call for me when he needs help. He tries to wait until 7, which is close to the time I need to get up with the kids. If he has trouble sleeping, he often uses his <a href="https://www.youtube.com/watch?v=Zie_EMU6LnI">Alexa-compatible adjustable bed</a> to change positions, saying, for example, “Alexa, ask my bed to raise head,” or, “Alexa, ask my bed to start massage.” Or he will ask the Echo device to play music to help him relax and get back to sleep.
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<h3>A close call</h3>
Early one morning last week, I partially awoke and heard Todd talking to Alexa. I rolled over, still half asleep, and then I heard an unusual sound: It was Todd’s voice amplified and played back on his Echo Show in his bedroom and on my Echo Show in the kitchen. He had asked Alexa to “make an announcement.” I didn’t quite understand what was said, but it wasn’t even 6 a.m. yet.
I jumped out of bed and hurried to his room.
His noninvasive ventilator was beeping, as it often does when there’s a high leak due to air blowing out of Todd’s mouth while he is still sleeping. But he was awake, and I realized that the ventilator hose was disconnected from the machine and he wasn’t getting any air. The bacteria filter had popped off, and I reconnected it to the front of the machine.
After taking a few deep breaths, Todd said, “That was scary.” He explained that at 5:45, he woke to the ventilator blowing hard and alarming, and <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">he wasn’t getting any air</a>. “My first instinct was to call for you,” he continued, “but I was afraid you wouldn’t hear me and I would lose my tidal volume. I tried not to panic, and tried to have Alexa call you.”
His call to my phone went straight to voicemail because I turn my phone off at night. That way, I’m not awakened by notifications for junk email, spam text messages, or Facebook messages and posts from people who have different sleep schedules.
Todd tried to call my home phone, but his Echo Show attempted to establish a video call with my Echo Show in the kitchen. We got a voice over internet protocol phone specifically for Todd to call me, and he calls that dedicated number frequently during the day while he’s set up at his computer. But apparently, Amazon assumes Echo users want to make inter-device video calls when calling a contact at “home.” Amazon knows who in Todd’s contacts has Echo devices.
Todd then asked Alexa to make an announcement, which was broadcast on both devices, but the volume wasn’t loud enough for me to hear. Finally, he asked Alexa to set the volume of his Echo Show to 10, and he repeated the announcement: “Need help.”
“If you didn’t hear that, my next step was to play &#8216;Thunderstruck&#8217; by AC/DC on volume 10,” Todd said.
We were both shaken by the close call. Unable to go back to sleep, I lay next to Todd on his bed and we strategized on how we could prevent a reoccurrence, such as taping the filter onto the machine, or leaving my phone on at night.
After I got Todd washed up and out of bed, I <a href="https://support.apple.com/en-au/guide/iphone/iph21d43af5b/ios">searched the internet</a> and figured out how to turn off notifications on my iPhone and still get phone calls from my contacts. Since then, I’ve been sleeping with my phone on and in my room.
Todd changed my contact information on his phone, which he has linked to his Echo device, to list the voice over IP phone as my “work,” which is fitting, and he changed the settings in his Alexa app to only allow calls to his favorites, which is only me. Now he has three ways to get my attention at night if needed — announcements or calls to either phone.
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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.

A scary incident made us rethink emergency communication methods

My husband, Todd, is paralyzed because of <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, so I transfer him from bed to wheelchair, and from wheelchair to the toilet, using <a href="https://www.youtube.com/watch?v=Zie_EMU6LnI">a sling and overhead lift</a>. This morning, as I moved him from his bed to the wheelchair, he told me, “My fingernail is cutting into my hand.” I separated his hands and continued the transfer.
Multiple times a week he gives me or one of his nighttime caregivers similar feedback. “My finger is bent.” “Straighten my wrist.” “The sling is caught on the headrest.” At times, he&#8217;s communicated to prevent significant injury, as when he points out that the sling&#8217;s straps are not properly secured to the lift.
He&#8217;s expressed concern that he’ll get hurt during transfers if he can’t talk.
<h3>Preparing for communication concerns</h3>
To stay one step ahead of his disease progression, I try to track down equipment before Todd needs it. It&#8217;s best to start the process of ordering a wheelchair before a fall, and to plan for an accessible home and bathroom before total paralysis.
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A couple years ago, after Todd’s voice weakened, I was concerned that he wouldn’t be able to call me at night. Although he can’t press a button with his hands, I found the <a href="https://enablingdevices.com/product/twitch-switch/">Twitch Switch</a>, which could be taped to his forehead with the wire leading to a doorbell. He could thus activate the switch by raising his eyebrow. He hasn’t needed to use that yet, as he can still speak to call me or ask his Echo Show device to call me on our home telephone.
I know that people who’ve lost their ability to speak can use <a href="https://abc7chicago.com/eye-gaze-technology-celebrating-abilities-device/5703479/">eye-gaze technology</a> while in a wheelchair or even in bed, but I didn’t think that would work for our communication during transfers.
I asked for other ideas on an ALS Facebook forum. Most caregivers who responded have learned to pay close attention to hands and feet. Someone suggested using a voice amplifier, which could work as long as a whisper of a voice remains. Others use flashcards with various statements, and they ask yes-no questions to narrow down and select what the person wants to say. Someone with ALS who&#8217;s lost the ability to speak expressed frustration at having to make a noise and then hope the caregiver could guess what&#8217;s needed. Every transfer feels risky.
Thinking about future progression with ALS, including worsening communication, is overwhelming. I&#8217;m reminded of the anxiety I felt in the first few months after Todd’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. I couldn’t sleep as my mind raced with worry.
A counselor encouraged me to focus on the present and to train my mind to live in today. I got to the place where I could sleep again and function to take care of <a href="https://alsnewstoday.com/columns/preparing-children-deal-grief-diagnosis-parenting/">the kids</a> and Todd, but I had to learn to balance the counselor’s advice with making necessary preparations for progressive disability.
I have <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">flashcards ready</a> in case of an emergency, but they&#8217;re cumbersome to use, and I haven’t found a great solution for communicating during a transfer. Unfortunately, not every problem has a solution.
I&#8217;m trying not to dwell on it. Some people with ALS lose their voices, and others can speak in a whisper until the end. Todd might be in that latter category. We don’t know what&#8217;s going to happen, so I&#8217;m trying to take the words of Jesus to heart when he said, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (<a href="https://www.biblegateway.com/passage/?search=Matthew%206%3A34&amp;version=NIV">Matthew 6:34 NIV</a>).
<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.

Tag: communication

A scary incident made us rethink emergency communication methods

Planning for future ALS progression while not borrowing trouble