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A couple of weeks ago, I lined up a daytime <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregiver</a> for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the &#8220;Bellied Up&#8221; podcast, a call-in advice show with comedians Charlie Berens and Myles, the You Betcha Guy. They invite callers to belly up to the bar and share their situation, and then the guys dispense advice with thick Midwestern accents. It’s mostly silly banter, and I’ve since listened to a few older episodes looking for a laugh.
<a href="https://podcasts.apple.com/us/podcast/maple-syrup-and-death-75/id1625967187?i=1000635005059" rel="nofollow">In one episode</a>, a man called in for advice because his girlfriend was annoyed that he was working too much during maple syrup season. “I&#8217;m a funeral director by day, and then maple syrup producer by night, pretty much.”
“Oh, you&#8217;re a funeral director,” Charlie said.
“Let&#8217;s hold on with that,” Myles interrupted. “We&#8217;re going to dive into that in a little bit here.”
I smiled, anticipating the humor that was sure to come.
[recommended-reading id=89720]
<h3>Questions for the living</h3>
Death is frequently on my mind because Todd has had <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for more than 13 years. <a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> is no joke, but both Todd and I have found comfort <a href="https://alsnewstoday.com/columns/weve-developed-dark-sense-humor-living-with-als/">when humor and grief collide</a>. We often laugh at the absurdity of the hardest parts of life.
After fleshing out the maple syrup situation, Myles asked the funeral director a question for the living: “When is too early to start looking at a plot in a cemetery? Do you have any advice on that? Should we be looking now to find some prime real estate, or can I wait a little later?”
“There’re two things that you’ll never escape,” he replied. “Death and taxes. So my piece of advice is, if you’re thinking about being buried in a cemetery, buy your plot now. That way it’s cheaper in the long run because you can prepay everything, all set ready to go right now, not pay a single penny more when your time comes, and it’s gonna be a lot cheaper now than it will be in the future.”
I’ve considered various burial sites in our area, such as a beautiful cemetery where green burial is an option. But in the green burial section, there are no headstones. While I’m drawn to the idea of my body becoming earth and providing nutrients for plants to grow, I’d also like to have a specific spot marked for my kids to visit, more than just a path that diverges into the woods to a pretty glade.
<a href="https://alsnewstoday.com/columns/honoring-family-memorial-day-visit-cemetery/">Every Memorial Day</a>, the kids and I visit Lakeside Cemetery in Hancock, Michigan, where my dad is buried, as well as his parents, both sets of his grandparents, one of his sisters, and his aunt and uncle, who were like surrogate grandparents to me. That&#8217;s where I want Todd and me to be buried, but I hadn’t considered buying a plot now.
While it’s unlikely Todd will survive for many more years with ALS, I’m only in my mid-40s. But if plots aren’t getting any cheaper, perhaps Todd and I should buy a plot for both of us now and nail things down.
I posed the question to Todd: “Should we be buried in the old section of the cemetery where my great-grandparents and my aunt are buried? There are trees there, and it&#8217;d be nice to have shade when I visit. Or should we be buried near my dad on the other side of the cemetery?”
“Will your mom be buried next to him?”
“Yes.” Her name is already on the headstone.
“That’s where we should be, too,” Todd said. “But if you get remarried, you could end up being married to him for longer than you were married to me. You could be living in Florida, and would you really want to have your body brought all the way back here?”
“I could be cremated,” I said, “and if I remarry, I wouldn’t have kids with him. I’d want to be buried where our kids would visit both of us.”
“What do you think of buttercups and daisies on the headstone?” I asked because I like wildflowers.
“I love buttercups,” Todd said, “because that’s you.” Buttercup has long been his term of affection for me. “But I want a cross.”
We&#8217;re going to design a cross with buttercups.
“Should we get the headstone made now and store it?” I asked. “We could put it in the garage — or in our living room.”
“I think if we buy a plot, we can put it at the cemetery and add the dates of death later.”
“And then we can visit our plot together,” I enthused.
“That would be romantic,” Todd said.
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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.

Humor and grief collide as my husband and I discuss burial plans

Last Friday night, I pulled a prescription bottle out of the cupboard, preparing to take <a href="https://alsnewstoday.com/columns/hard-year-behind-turn-antidepressant/">my daily antidepressant</a> — just one half-pill of the smallest dose, but that&#8217;s been enough to take the edge off and help me cope with the <a href="https://alsnewstoday.com/columns/wearing-grief-backpack-office-ladies/">ongoing grief</a> of living with my husband&#8217;s <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
The bottle was empty! Ugh.
I scoured my cupboards in vain for any bottles with a leftover pill. I called the pharmacy and went through the prompts to refill the script. “Your prescription will be ready Monday morning at 10 a.m.,” the automated voice informed me. “To accept this time, press 1. For an earlier time, press 2.”
I pressed 2.
“An earlier time is not available,” a recorded message played.
My heart sank. Ugh.
[recommended-reading id=88222]
For the first time in years, I’d be without my antidepressant. I&#8217;d tried another medication before finding this one, which I could tolerate as long as I took only a very small dose. The doctor who&#8217;d prescribed it told me I was taking such a small dose that I could stop at any time without needing to taper off it, but the thought of losing one of my coping mechanisms filled me with <a href="https://alsnewstoday.com/news/caregiver-burden-tied-anxiety-levels-als-knowledge/">anxiety</a>. I have other health issues too — including digestion problems that I&#8217;ve attributed to living with <a href="https://alsnewstoday.com/columns/stressful-night-dealing-husbands-breathing-difficulties/">chronic stress</a> from the ALS.
Would I be able to handle withdrawal symptoms on top of everything else?
“Who do we know who’s depressed?” I asked Todd, my husband. “It’s the most commonly prescribed antidepressant.”
I thought for a moment that I might ask if I could borrow one pill from a friend, but quickly dismissed that course of action because I wouldn’t want to intrude on people’s privacy. Maybe it&#8217;d come to that if I had a mental breakdown before the weekend was over.
<h3>Assessing my state of mind</h3>
Throughout the weekend, I found myself questioning my emotions.
“Do I seem crankier than usual?” I asked Todd after I yelled for <a href="https://alsnewstoday.com/columns/dog-companion-lessons-learned/">our dog, Comet</a>, to come back into the house.
We’ve been letting Comet outside for only brief periods, because with our unusually warm winter, he’s twice gotten into something in the woods near our house that made him sick. I have enough to deal with without getting up multiple times at night to let a dog out or cleaning up messes in our mudroom.
So I was crabby when he didn’t come in when I called the first time, but Comet trotted happily into the house when I screeched at him. Go figure.
Todd wasn&#8217;t too concerned about the tone I used with Comet, but he pointed out that I was overly worked up when I realized we were getting charged a monthly rental for a suction machine we weren&#8217;t even using. We have one that someone donated to us, and it works well — but the battery quit holding a charge, so Todd’s doctor prescribed one. The medical supply company delivered a new machine, but it didn’t even have a battery.
If I need to suction Todd in an emergency, I don’t want to have to take the time to plug in a cord. I&#8217;m frequently frustrated trying to navigate our medical system and by the lack of support for those with ALS.
My days are usually filled with emotional up and downs.
When I’m watching an engrossing show with Todd or hearing about our kids’ days, I’m able to compartmentalize and not think about <a href="https://alsnewstoday.com/living-with-als-2/">the ALS aspects of our lives</a>. When we have visitors, I might seem as though I&#8217;m doing perfectly fine, because in those moments I am. I’m an extrovert, so I perk up when we have company or on those rare occasions when I have tea with a friend.
But when my mind isn&#8217;t engaged in a focused activity, ALS is often in the forefront of my thoughts. A disease with no cure and ongoing progression is depressing.
<h3>A new insight</h3>
By Sunday evening, I noticed that my digestion felt better than usual, prompting me to search the side effects of the medication online. Sure enough, the antidepressant that I&#8217;d been on for years is linked to digestive problems, and thinking back, my digestion issues may have begun shortly after I went on it.
Maybe I’m better off without it. I’ll need to see how it goes and lean into my other <a href="https://alsnewstoday.com/columns/breathe-stress-relax/">coping mechanisms</a>, such as journaling and <a href="https://alsnewstoday.com/columns/finding-hope-alongside-ski-trail/">skiing</a> while soaking in the beauty of falling snow on the ski trail.
<figure id="attachment_89941" aria-describedby="caption-attachment-89941" style="width: 688px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-89941" src="https://alsnewstoday.com/wp-content/uploads/2024/02/Joyful-Sorrow-Skiing-2024-02-18.jpg" alt="A wide, snow-covered path with trees, some bare and some pine, on either side." width="688" height="330" data-wp-pid="89941" /><figcaption id="caption-attachment-89941" class="wp-caption-text">On the ski trail. (Photo by Kristin Neva)</figcaption></figure>
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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.

Assessing the effects of a weekend without my antidepressant

In the wake of <a href="https://www.als.org/understanding-als/what-is-als">ALS</a> loss, certain touchstones bring comfort every time I think of them. This includes small things like funny photographs, private nicknames, and sentimental gifts. In grief, even a favorite old coffee mug can bring immeasurable joy. I have one additional beloved thing, too: a quotation I discovered early on in my grieving process.
When I read in an online ALS grief group to “be the things you loved most about the people who are gone,” I immediately recognized a glimmer of hope. I realized that losing my husband, Jeff, to ALS did not mean losing all of the things that I loved about him. While it didn’t dissipate my grief, it gave me something concrete to organize around when I was newly bereaved, and still does. Jeff is gone, but the things I loved about him don’t have to be.
This marked a new way of thinking.
These words, the insightful author of which is unknown, have guided me in many ways since Jeff died almost four years ago, an intense 19 months after his <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. The pain of losing him, coupled with an intense, exhausting journey in caregiving, left me casting about looking for ways to make sense of what we had gone through, and coming up short. I couldn&#8217;t find any meaning in why he had to endure what he did, and what it had cost him — what it had cost us.
[recommended-reading id=83835]
In the ensuing months and years, thinking about “being the things I miss the most about him” has influenced me so much that I keep a separate task list on my phone to remind me to do, each day, some of the many things I loved about him. This list includes things I admired about and learned from Jeff that influenced me regarding how I want to live and what kind of person I want to be. Some of the entries include: Burn candles at home (safely). Feed the birds. Send thank-you notes. Make guacamole from scratch. (I haven’t learned that one yet but find comfort from knowing that I will.)
<figure id="attachment_89228" aria-describedby="caption-attachment-89228" style="width: 357px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-89228 size-full" src="https://alsnewstoday.com/wp-content/uploads/2024/01/rolling-stones.jpg" alt="A middle-aged couple pose together for a photo in front of the stage at a Rolling Stones concert in Detroit. It appears the concert is at Comerica Park, home of the Detroit Tigers baseball team. " width="357" height="357" data-wp-pid="89228" /><figcaption id="caption-attachment-89228" class="wp-caption-text">Jeff Sarnacki and Juliet Taylor attend a Rolling Stones concert in July 2015, before his ALS diagnosis. Juliet says she has Jeff to thank for her love of the Stones, which always remind her of him. (Courtesy of Juliet Taylor)</figcaption></figure>
Jeff was sweetly and surprisingly domestic and created a beautiful, peaceful home for us, a place full of excellent cooking and warmth and good smells. He cherished the small things: making snowmen, tending to plants, throwing the ball for the dogs. I remember those moments vividly, and they’re woven into the texture of my memories of him. He brought that beauty to our life together, and left me with a blueprint to continue.
This notion of legacy, of leaving something tangible, is heavy on my mind right now as I learned about the loss of a friend to ALS last week. <a href="https://www.usatoday.com/story/sports/mlb/reds/2024/01/08/adam-wilson-cincinnati-reds-fan-and-als-advocate-dies-at-41-mlb-lou-gehrig-day/72157126007/">Adam Wilson</a> and I never met in person, but we corresponded often when he was working to encourage Major League Baseball to adopt an annual <a href="https://lg4day.com/">Lou Gehrig Day</a> each June to raise awareness about the disease and to honor those living with, and those who have died from, ALS.
Together with another friend, <a href="https://www.espn.com/mlb/story/_/id/31546742/the-ballad-bryan-wayne-galentine-how-one-man-dream-led-creation-lou-gehrig-day-mlb">Bryan Galentine,</a> and others, Adam’s efforts to create Lou Gehrig Day were sustained, tireless, and ultimately successful. It was an incredible thing to see it come together week after week, a very heady time in the community as we watched this small team of advocates succeed in building something enduring and meaningful to the <a href="https://alsnewstoday.com/forums">ALS community</a>. 2024 will mark the league’s third annual Lou Gehrig Day, an event now enjoyed by hundreds of thousands of people.
Adam was also a truly gifted <a href="https://www.hearthehope.org/jealous-featuring-adam-f-wilson/">musician</a>, and enthusiastically gave me permission to use one of his original songs to accompany an ALS advocacy video that a group of us had created.
When I think about the attributes and gifts that our community can take from Adam — how we can be the things we loved the most about those who are gone — for me it’s his determination, passion, kindness, and creativity, all things that Adam showed every day, in ample supply, during the brief time that I knew him.
There’s little consolation in loss from ALS. It is currently <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/amyotrophic-lateral-sclerosis-als">100% fatal</a>, an unacceptable statistic that so many are working to change through science, medicine, raising awareness, and funding — any means possible. So many of us fervently wish for and work toward a day when ALS is effectively treatable and curable.
In the meantime, I do find consolation in encouraging myself to be the things I loved about the people who are gone — the small things like inside jokes, mannerisms, and habits, and the big things like building a life as beautiful and meaningful as possible, and creating something amazing for others to value and to make a difference in one’s community. It’s through these legacies that the rest of us, if we are open to it, can find meaning and a way forward in loss.
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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, 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 I learn to live from those we’ve lost to ALS

“Count your blessings.”
“You need to be thankful for what you do have.”
People often give silver-lining advice to those facing hard things, and I’ve been on the receiving end of it since my husband, Todd, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>. I’ve also found myself offering similar sentiments to people in emotional distress. It’s such a natural impulse to try to problem-solve rather than simply saying, “I hear you. That’s really hard. I’m sorry you&#8217;re dealing with that.”
A few years ago, I didn’t have a response to these sentiments, except to shut down and stop talking about <a href="https://alsnewstoday.com/columns/wearing-grief-backpack-office-ladies/">my grief</a>. Thinking back to one conversation in particular, if I had the words at the time, I would&#8217;ve said, “I am thankful for what I have, and I can be thankful for my blessings while acknowledging the hardness of <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a> and grieving the losses we’ve had.”
I don’t know how that conversation would&#8217;ve evolved from there, but maybe it would&#8217;ve resulted in a deeper connection rather than me pulling away and engaging in only surface pleasantries.
[recommended-reading id=83155]
Before Thanksgiving this year, I thought about how we usually go around the table and say something we&#8217;re grateful for, and I wondered if we might make room for sharing other emotions, too. What if we said something we were sad about as well? Being more authentic might <a href="https://alsnewstoday.com/columns/suffering-connects-compassion/">open our hearts</a> to one another.
After suggesting to my family that we do this, Todd pointed out that before <a href="https://obamawhitehouse.archives.gov/sites/default/files/docs/transcript_for_abraham_lincoln_thanksgiving_proclamation_1863.pdf">Abraham Lincoln’s proclamation</a> for a &#8220;Day of Thanksgiving,&#8221; he mentioned the losses from the Civil War. In his Oct. 3, 1863, speech, Lincoln said that the United States was “in the midst of a civil war of unequaled magnitude and severity,” and then went on to enumerate blessings: “peace has been preserved with all nations, order has been maintained, the laws have been respected and obeyed, and harmony has prevailed everywhere, except in the theater of military conflict.”
This year at our dinner table, we tried acknowledging a loss along with our gratitude.
Todd said he was sad that he was losing his voice, has trouble talking on the phone now, and can’t speak loud enough to participate in group conversations. He said he&#8217;s glad he&#8217;s still here to be a part of our lives.
I said that I missed my dad and my aunt, who have died, and that I’m thankful Todd is still with us.
The holiday season can be hard. The absence of those we love who have died is glaring. And life with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> can be anything but merry.
Let’s allow room to grieve what we’ve lost while being thankful for what still remains. It’s all a part of being human, so let’s try to <a href="https://alsnewstoday.com/columns/sadness-joy-paradox/">hold it all</a>.
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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, 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.

Expressions of grief and gratitude can be equally important

I&#8217;m weary after <a href="https://alsnewstoday.com/perspective-what-i-learned-in-13-years-of-als-caregiving/">13 years</a> with the <a href="https://alsnewstoday.com/what-is-als/">ALS</a> of my husband, Todd. <a href="https://alsnewstoday.com/columns/living-with-als-ive-sometimes-found-talk-therapy-beneficial/">I started therapy</a> in hopes that I’d get some help. At our first session, I told my therapist that I’d like homework, such as a journaling prompt.
A couple sessions in, she pulled out <a href="https://www.hiawathawellness.org/product-page/inspiration-from-the-hiawatha-forrest">a deck of cards</a> with scenic pictures from our area. Each card featured a different word, such as Growth, Boundaries, Instinct, or Truth. On the back of each card was a related statement, which I could use as a journaling prompt.
“Look through the cards and then pick one,” the therapist said, “but don’t look at the back until you choose.”
<figure id="attachment_87669" aria-describedby="caption-attachment-87669" style="width: 612px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-87669" src="https://alsnewstoday.com/wp-content/uploads/2023/10/birch-trees.jpg" alt="A photo of birch trees that highlights their papery bark." width="612" height="294" data-wp-pid="87669" /><figcaption id="caption-attachment-87669" class="wp-caption-text">Kristin Neva and her husband, Todd, used birch tree imagery in their wedding announcements and decor. (Photo by Kristin Neva)</figcaption></figure>
I was drawn to a card with a birch tree on it because I love the tree&#8217;s white, papery bark. Todd and I incorporated it into our wedding announcements and decor, with scanned birch bark as the background for our invitations, a birch arch my dad fashioned for the sanctuary entrance, and white roses in heart pockets that my mom made from the bark of fallen birch trees, designed for the end of each pew.
When I walk or ski, I often pause to admire birch trees for their beauty, but the word paired with the birch tree card was Abundance.
[recommended-reading id=87574]
<h3>Where is there room for abundance in grief?</h3>
I winced at the word. For much of my life, I&#8217;ve been part of a church culture in which people often quote the words of Jesus: “I am come that they may have life, and may have it more abundantly” (John 10:10). That&#8217;s how it reads in the King James Version. The New International Version translates the end of that phrase as “have [life] to the full.”
Some Christian speakers promise health, wealth, and happiness as a result of a life devoted to following God. Others acknowledge the suffering that&#8217;s a part of life in a broken world, but still promise peace, joy, and victory amid suffering.
But I don’t feel victorious as we <a href="https://alsnewstoday.com/living-with-als-2/">live with Todd’s ALS</a>. I watch his body waste away, helpless to prevent it. We can’t beat the disease, and I can’t shake <a href="https://alsnewstoday.com/columns/wearing-grief-backpack-office-ladies/">my grief</a>. I live with chronic sadness. My life doesn&#8217;t have the abundance I imagined.
I rejected the card and chose one with the word Truth.
In my last session, I paused again at the birch card. “Abundance,” I said, looking at the birch tree. “Maybe.”
“Why don’t you take that one?” my therapist said. “Last time you wanted nothing to do with it.”
I chose the card and turned it over. The back read, “Abundance is what you hold in your heart.”
Later, I wrote in my journal, “Abundance is what I hold in my heart. I hold on to love and beauty. Except when I’m stressed, tired, and burnt out.”
There are times when love and laughter well up within me, and I feel the joy of living life in this world, even with ALS. But when I think of the trauma we&#8217;ve gone through, and are still living through, I grieve what we’ve lost and what we&#8217;re still losing. My heart also holds pain and deep sadness.
I&#8217;m trying to hold some space for abundance amid this <a href="https://alsnewstoday.com/columns/grief-ongoing-loss-permission-feel-discomfort/">complicated grief</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, <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.

Finding space for abundance in life, even while managing grief

After my husband, Todd, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, I was overwhelmed by grief and filled with anxiety about the future. How was I going to manage as a single parent with <a href="https://alsnewstoday.com/columns/preparing-children-deal-grief-diagnosis-parenting/">two small children</a>? How would they cope with the loss of a parent? What would I do for work after he’s gone?
My mind raced, and I couldn’t sleep. I found a <a href="https://alsnewstoday.com/als-mental-health/">counselor</a> to help me get a grip. He encouraged me to train my mind to focus on today. I met with him regularly for a couple months.
A few years later, Todd needed a <a href="https://www.youtube.com/watch?v=yfITlFFBaRw&amp;t=9s">wheelchair</a>, and he had trouble sleeping at night. We&#8217;d moved back to my hometown so we&#8217;d have the help of my parents, but I was beginning to lose it again.
I did another round of therapy with a new counselor. After seeing him for a couple months, there was once a last-minute conflict, and I ended up spending the time in my car writing in my journal.
I realized that writing with intentionality was nearly as cathartic for me, and I didn’t want to spend the time and money on therapy anymore. In time, I also realized that my stress was magnified because I wasn’t getting adequate sleep. Todd was increasingly dependent on nighttime care. When we started hiring help at night, I felt better.
[recommended-reading id=83803]
<h3>A third round of therapy</h3>
Fast forward to this fall, <a href="https://alsnewstoday.com/columns/trying-see-beauty-after-13-years-with-diagnosis-als/">13 years</a> into <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, and I’ve been feeling increasingly isolated since Todd has become homebound. I’m weary from living with chronic stress. I continue to journal, but I thought I might be helped by an outsider’s perspective.
I met with another therapist. I might be doing as well as possible, considering the circumstances, but I figured therapy was worth another try. I was able to talk candidly, free from any expectations that accompany conversations with people I know.
During our sessions, I filled her in on our situation, the ongoing stress, and the grief that we’ve been living with. I expressed my frustration with our healthcare system and the lack of support for people with <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. I also voiced thoughts about the existential questions that plague me.
The counselor listened as I sorted through my thoughts and emotions. During one session she asked, “How long have you felt like a single parent?”
“Never!” I responded immediately, surprised by my visceral reaction. Todd can’t do a lot of things, but I’m grateful that he&#8217;s still an involved parent.
During another session, I expressed my frustration about our <a href="https://alsnewstoday.com/columns/power-distraction-when-dealing-with-negative-emotions/">night caregiver shortage</a>. “If I can’t line up help, his care falls on me. Everyone else can say ‘I’m not available,’ but I can’t.”
My therapist posed a question: “You mentioned your husband does a lot on the computer. Could he be involved in the recruitment process? Why is it your responsibility?”
I paused, thinking through the roles that Todd and I play.
“I like doing the advocacy for equipment because it feels good to accomplish things and I’m good at it, but I don’t know why I’m doing all the recruiting,” I said.
<h3>Making use of therapy</h3>
When I got home, I asked Todd why he doesn’t recruit.
“Because you’re active on social media and have local connections,” he said.
“But you can email people.”
I asked him to send recruitment requests to church and college-ministry leaders, and he was happy to do so. Increasingly, I’ve been asking him to do other things. When the kids ask me to do something that Todd could do, such as order something online, I tell them, “Go ask Dad.” Todd likes to stay busy anyhow.
By my fifth session, I found myself wishing I could skip my appointment, preferring to do some work outside with my tractor on a sunny afternoon. I like tractor therapy, but since I had a session scheduled, I went and talked. By the end of the session, I felt like I didn’t have anything more to say, and I told the therapist I was going to come in less frequently.
I scheduled my next appointment for the following month. I don’t want to go to therapy every week, but I’m glad I have it available as a tool when I need it.
<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.

Living with ALS, I’ve sometimes found talk therapy beneficial

Last week, I set my husband, Todd, up on his computer before heading out for my weekly ukulele group. It’s difficult to leave my husband for long, because he&#8217;s paralyzed by his <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. But my class lasts only an hour and I&#8217;d be less than 10 minutes away. In an emergency, he could call or text and I’d rush home. His <a href="https://www.youtube.com/watch?v=CGfi18xZ5Xk&amp;t=134s">Google Pixel phone is paired</a> to his computer, and he controls his computer using a <a href="https://www.youtube.com/watch?v=v2wuJPV3--E">HeadMouse</a>.
I asked him if he’d mind watching a webinar on college financial aid while I was gone. The Zoom meeting would be starting just as the <a href="https://www.keweenawreport.com/news/local-news/ukulele-players-now-have-their-own-local-group-yooper-leles/" rel="nofollow">Yooper-leles</a> were wrapping up our practice session.
When I returned home, I could hear Todd whistling from his office — not a tune, but rather an alert, as he sometimes does if I’m unable to hear him.
“Just a minute,” I called back to him, but he whistled again.
I ran to his office, and Todd looked to be in distress.
“Turn it off. Turn it off.”
I didn’t understand what he was asking me to do.
“Turn off the computer. Just press the button to turn it off.”
I shut down his computer, and he said, “I’m never getting on a Zoom call again. I swear.”
He asked me to put his noninvasive ventilator on the “sick” program, which pushes more air into his lungs than the typical setting he uses during the day. After he caught his breath, he explained what had happened.
[recommended-reading id=83803]
When he joined the Zoom call, his cursor froze, and he wasn’t able to control his computer. He began to panic, and he almost entirely <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">lost his tidal volume</a> trying to call me with his Echo Show device in the other room. Normally he can use that to call my phone when he&#8217;s in bed, but the webinar had begun and the speaker was talking continuously. Alexa was not responding.
Todd’s heart rate spiked, and he tried to calm himself by breathing slowly. By the time I got home 15 minutes later, he was in a cold sweat, and his heart rate was still high. But by that point, he was able to whistle when I entered the house.
I pulled a stool up next to him and held his hand as he let the ventilator refill his lungs. Eventually, he asked me to restart his computer, and we tried to join the Zoom meeting again just to see if it was a fluke. There was no issue the second time, so he figured his computer had just crashed.
“I now realize how dependent I am on my ability to <a href="https://alsnewstoday.com/aids-and-adaptations/#Communication_aids">communicate</a> to keep me calm,” Todd said.
My husband usually takes his ALS in stride. I&#8217;m the one in the relationship who&#8217;s more of an emotional mess. Todd doesn’t talk much about his feelings, but on the rare occasion when he does express vulnerability, I feel a swell of compassion rise up in my heart.
Sharing our vulnerability opens our hearts to each other.
<h3>Finding healing</h3>
A few days later, I was chatting on the phone with a friend, and we were discussing the challenges of marriage. When I tentatively expressed my sadness over the losses in my marriage, she asked me if I had grieved them.
“I grieve often,” I said, “but usually in my journal, or <a href="https://alsnewstoday.com/columns/long-term-grief-wolf-like/">I cry by myself</a>.”
I’m cautious about burdening my friends, so I usually call only when I feel sufficiently cheerful. After all, who wants to be friends with someone who is perpetually mired in grief? But on this day, I shared my grief, and she cried with me.
There&#8217;s something healing about having our grief witnessed.
<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.

Sharing our vulnerability opens our hearts to one another

Every once in a while, I step onto my soapbox (mine has special safety rails) to voice my view about an important issue in the ALS community. This time, I’m here with praise for &#8220;<a href="https://alsnewstoday.com/als-mental-health/">ALS and Mental Health</a>,&#8221; an article recently published in <a href="https://alsnewstoday.com/">ALS News Today</a>. In my opinion, it not only validates the elephant in the <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patient exam room — feelings of depression, grief, and anxiety — but it also offers us concise and useful resources.
<h3>It hasn’t always been this way</h3>
Newly <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a> patients might think, “Well, hasn’t emotional health always been included in patient care discussions?” No, it hasn’t.
When I learned I had ALS in 2010, a solid 13 years ago, the prognosis was only two to three years of life following diagnosis. This shortened timeline emphasized how to deal with the progression of <a href="https://alsnewstoday.com/symptoms-of-als/">physical symptoms</a>. I was handed a thick manual filled with photos and descriptions of medical equipment I could expect to use. My husband and I were told to check if our home had enough room to accommodate a <a href="https://www.hoyerlift.com/">Hoyer lift</a>, a hospital bed, and me rolling throughout in a power wheelchair. All very good advice, but it didn’t leave much time to have a conversation about how I was feeling.
[recommended-reading id=18547]
The usual parting suggestion was that I could be referred to a grief counselor or to someone in hospice to talk about death and dying, if I felt I needed it. Those are good resource people, but I needed help developing coping skills, balancing my well-being, and strengthening my emotional resilience.
“We all have an end,” school psychologist Amanda Sifford, who has ALS, says in the article. “Unfortunately, when you have an ALS diagnosis, it just feels like it’s hanging over your head — at least, until you adjust and accept the situation.”
<h3>Adjust and accept</h3>
I found it challenging to process my condition through the stages of grief and finally feel ready to accept my new circumstances. Along the way, I read blogs written by ALS patients. Most expressed their anger, shock, and sadness while posting photos of their slow demise.
Meanwhile, I pieced together a simple formula for daily living, one that combined my knowledge of wellness with the adjustments required to <a href="https://alsnewstoday.com/living-with-als-2/">live with my ALS</a>. I decided to add my voice to the ALS community and began my &#8220;<a href="https://alsandwellness.blogspot.com/2015/01/welcome.html">ALS and Wellness Blog</a>.&#8221;
<h3>Do ALS patients feel depressed?</h3>
Still, I noticed the ALS medical community was slow to recognize the need for mental health resources and offer them to patients and caregivers.
Four years ago, <a href="https://alsnewstoday.com/columns/als-depression-link-anxiety-prognosis/">I wrote this column</a> about my surprise that the medical community was only beginning to identify depression among ALS patients. I wondered why we needed multiple studies to ascertain if having ALS caused patients to feel negative emotions. Really? 
Almost <a href="https://pubmed.ncbi.nlm.nih.gov/36066075/">one-quarter</a> of ALS patients experience depression. The <a href="https://n.neurology.org/content/86/24/2271.abstract?ijkey=2ce9afd889a33617f013836cc1ca65eab9cc2c83&amp;keytype2=tf_ipsecsha">risk of depression</a> is often highest immediately before a person is diagnosed and <a href="https://www.massgeneral.org/neurology/als/patient-education/symptom-management">soon afterward</a>. Really?
We need information to help us deal with anxiety, depression, and apathy. Information to help us cope and thrive. You’ll find it all in the ALS News Today article. That’s why I’m applauding this website for adding this excellent resource. If you&#8217;re a patient, caregiver, or in a circle of support, I encourage you to bookmark it.
Because this resource is one more valuable way we can learn to live well while we live with ALS.
<hr />
Note: ALS News Today 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.

Voicing my approval of a mental health resource for those with ALS

When my two teenagers came home from school, I had them sit down to listen to the first five minutes of a recent &#8220;Freakonomics Radio&#8221; podcast episode, &#8220;<a href="https://freakonomics.com/podcast/swearing-is-more-important-than-you-think">Swearing Is More Important Than You Think</a>.&#8221;
The host, Stephen Dubner, is struck that there seems to be more swearing now than ever, and often in places we wouldn’t expect. He introduces the topic, and then says, “Let’s start by hearing from a few of our listeners.”
My daughter’s eyes grew wide as she realized she was hearing her mother&#8217;s voice:
<blockquote>&#8220;I tell my kids they need to save those words for when something really bad happens, instead of saying, &#8216;I’m so effin&#8217; happy,&#8217; because otherwise you have no language left to express extreme frustration or sadness or grief.&#8221;</blockquote>
My son’s face showed disbelief, but it was me, and I&#8217;ve told him that. I grew up in a culture where we didn’t swear, and my husband, Todd, and I have maintained that culture in our home. I didn’t even swear when I sent the recording into the network; I said the euphemistic letter &#8220;f&#8221; followed by &#8220;-ing.&#8221;
[recommended-reading id=82976]
But I did swear after Todd was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>. I felt compelled to use the worst language I knew as the most honest expression of my emotions from experiencing one of the worst things imaginable. Because swearing had been a lifelong taboo, the language could approach the depth of my anger and sorrow.
I still don’t swear around other people often. It’s not helpful for my husband or <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">kids</a> to hear my unfiltered grief, but I sometimes scream expletives when I’m by myself in the car, and my journal contains a fair amount of curse words because I often write when I’m upset.
<a href="https://alsnewstoday.com/what-is-als/">ALS</a> is a brutal disease that involves a series of losses, and while I do experience moments of <a href="https://alsnewstoday.com/columns/sadness-joy-paradox/">joy and gratitude</a>, I need to process the <a href="https://alsnewstoday.com/columns/long-term-grief-wolf-like/">ongoing grief</a> that&#8217;s part of my life.
I&#8217;d submitted a longer clip in which I explained that backstory, but Dubner only used the part that I reference above. Todd was amused that I was on a popular podcast that could&#8217;ve possibly set the record for the number of swear words used, although they were all bleeped out. I delighted in my 15 seconds of fame, as I wondered whom I might share it with.
And then I thought about my ALS family, many of whom share their frustrations on social media, often punctuated with expletives. Since we are all dealing with this **** disease, I think you’ll get it.
<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: grief