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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.
[recommended-reading id=86858]
<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.

The power of distraction when dealing with negative emotions

Have you ever tried to assemble something or repair something only to finally give up and seek help? Such episodes were among my greatest frustrations before I was <a href="https://alsnewstoday.com/als-diagnosis/">stricken with ALS</a>. In retrospect, they feel like mere child&#8217;s play when compared with what I go through now.
As a result of how far along I am on the <a href="https://alsnewstoday.com/what-is-als/">ALS</a> continuum, I&#8217;m unable to scratch an itch, wipe my mouth, hug my wife and daughter, or get an insect off my face or any other part of my body.
It&#8217;s <a href="https://alsnewstoday.com/columns/als-paralysis-devastating-patients-caregivers-trap/">frustrating to have to wait</a> for someone else to do those simple tasks, which most people take for granted. I guess it&#8217;s a positive that I&#8217;m not afraid of bugs. Most of the time, I just sit or lie in bed and wait for the itching to stop or the fly to leave. Very frustrating. But there&#8217;s more.
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The lives of men and women are filled with routine and even mundane activities, some of which provide satisfaction, relaxation, and a sense of accomplishment. Doing yard work, vacuuming, taking out the trash, maintaining cars, doing laundry, and preparing meals are interchangeable no matter who does them — but they must be done.
The tasks may be tedious and boring, but they&#8217;re also frustrating for those of us with ALS who can&#8217;t do them. Moreover, the longer we need to get to them, the more frustrated we become. ALS can cause <a href="https://alsnewstoday.com/columns/planning-future-als-progression-while-not-borrowing-trouble/">anxiety</a>, guilt, inadequacy, and trepidation, which for me leads to a level of frustration that&#8217;s difficult to describe and <a href="https://alsnewstoday.com/columns/expressions-grief-swearing-finding-words-husbands-als/">accept</a> because my wife has to do most everything now.
<h3>Dealing with my frustration</h3>
My frustration level is greatest when I&#8217;m not able to get involved with solving some of life&#8217;s problems for my family. For example, we&#8217;ve had two water leaks in the past month, and unfortunately, they&#8217;ve led to other repair problems. All I could do was watch my wife&#8217;s frustration as she made numerous calls and set up appointments to get the work done.
Additionally, my daughter has a major water problem that emanated from an adjacent property. It was the first time she&#8217;d experienced anything on that level. Talk about stress — this issue caused all three of us tremendous frustration.
ALS prevented me from making a two-hour drive to help her. All I could do was talk to her and recommend what she should do. For fathers like me, not being able to help your daughter, your only child, is the ultimate frustration.
Under normal circumstances, I would&#8217;ve been there with her to help resolve the problem. But ALS is far from normal. It prevented both my wife and me from going to her aid.
Some may say, &#8220;C&#8217;mon Jim, that&#8217;s not a huge issue. It happens to a lot of people.&#8221; Yes, it does, but these kinds of situations are relative from family to family. I just know that things would&#8217;ve been different if I weren&#8217;t severely debilitated by ALS.
I wrote a column titled &#8220;<a href="https://alsnewstoday.com/columns/map-finding-victory-als-patients/">Finding My Way Through the Doorway Marked &#8216;Humility.&#8217;</a>&#8221; Now it&#8217;s time for me to heed my advice from that piece: I should &#8220;find the victory in this.&#8221;
I called my brother, who has a wealth of knowledge on insurance issues and lives near my daughter. He stepped in and guided his niece through the morass of red tape and bureaucracy. And my daughter learned more than she ever wanted to know about water mitigation, drywall, flooring, and other related issues. I&#8217;m sure she also learned that sometimes life gets in the way of life. Victory!
The best outcome was the enhanced relationship that developed between the two of them. I rest a little easier now. While I&#8217;m still frustrated, I feel better than I did two days ago when I began writing this column.
Isn&#8217;t life interesting?
<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: emotions

The power of distraction when dealing with negative emotions

Living with ALS comes with a side of frequent frustration