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I’ve lived in the shadow of my husband Todd&#8217;s <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for <a href="https://alsnewstoday.com/columns/trying-see-beauty-after-13-years-with-diagnosis-als/">the past 13 years</a>. My days have been clouded by the bitter reality of knowing that life will only get harder until it&#8217;s over. The daily stresses of my caregiving are intense: clearing his airway when he chokes on food or his <a href="https://www.youtube.com/watch?v=ITcMaevMO04">lungs fill with mucus</a>, rushing to get his <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilator</a> going when he loses his tidal volume, and trying to find <a href="https://alsnewstoday.com/columns/challenges-hiring-nighttime-als-caregivers/">night caregivers</a> so both he and I can sleep.
Last weekend, one of Todd’s caregivers gave notice. She found a full-time job with benefits, and she hoped to stay on with us, but her schedule conflicts with the nights we need help. Anxiety flooded my body as I wondered if I’d be able to find someone to cover her shift.
When we lose a caregiver, I’m brought back to the <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">stressful days</a> in 2014, after Todd lost his ability to move enough to sleep independently. I was up and down all night while taking care of him. After two years of sleep deprivation, I realized that if I didn’t get sleep, our kids were going to lose two parents to ALS. We started fundraising to hire night care, and then we hired caregivers for Todd so that I could be off duty each night from 11 p.m. to 5 a.m.
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<h3>Coping with life with ALS</h3>
I posted on social media about Todd’s caregiving need. I sent text messages to friends and current and former caregivers, letting others know we&#8217;re looking for help and asking if they could spread the word and provide referrals. I emailed a home-care agency that used to help us, but with low expectations because they haven’t had any staff willing to take on a night shift for a few years.
When things fall apart, I feel furious that this is our life and that our healthcare system doesn’t provide adequate support. I’m already at my max. My fury gives way to defeat and resignation. And all I can do is wait and hope someone comes forward.
Distraction can be a helpful tool to address negative emotions, and I was able to relax a bit today when I got up on scaffolding to paint nail heads on the red gables of our newly constructed snow canopy. Being up high while touching up the paint took all of my concentration, and for a while I quit thinking about trying to find a caregiver.
Here are some other ways I distract myself from the stress of <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>.
<ol>
<li>Nature walks. I usually listen to podcasts while I walk, so I’m not ruminating on the challenges of life.</li>
<li>Television. Todd and I are now laughing our way through &#8220;Ted Lasso.&#8221;</li>
<li>Mountain biking. I focus on staying on the trail while avoiding rocks and roots. There&#8217;s no time to think about ALS when I’m trying to keep up with my 14-year-old son.</li>
<li>Outdoor work. I’m expanding my walking trails into the woods beyond the fields near our house. Using my tractor, I pull trees with the grappler on the front and chew up smaller brush with the brush hog on the back. It’s work, but it’s a different type of work than caregiving, and it rejuvenates my mind.</li>
</ol>
What distractions take your mind off ALS? Please share them in the comments below.
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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.

Tag: distraction

The power of distraction when dealing with negative emotions