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I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for nearly 14 years.
She&#8217;s just a few years into <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>, and her husband uses a power wheelchair and speech-generation technology and receives ventilation through a tracheostomy. They&#8217;re still active and embracing life, and her stories of her husband writing a book and speaking in public brought back memories of our earlier years with the disease.
We had many relatively good years, even after Todd was paralyzed and in a power chair, and particularly before he needed <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilation</a>. I think back fondly to winters when our family went to <a href="https://alsnewstoday.com/columns/living-life-precautions-virus-exposure-coronavirus-compromised-immune-system/">Michigan Tech hockey games</a> and to summers when we&#8217;d go to various beaches on Lake Superior.
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Todd used to go to Applebee’s with a group of guys on Thursday nights, and our family would attend church Sunday mornings. Todd started and led a Second Saturday breakfast for men of the church, and he also became a lay preacher, speaking at our church every few months and occasionally at other churches.
While I was home taking care of Todd and our two kids, Todd and I wrote and published <a href="https://nevastory.com/heavy/">our memoir</a>. Then I wrote three <a href="https://nevastory.com/copper-island-novels/">fiction novels</a>. I got excited whenever my mom would take our children for Grandma time and we’d have uninterrupted time to work on the books.
Todd helped me rework scenes and edited the novels. He taught himself Adobe InDesign, typeset the books, and created the covers. We recorded our reading of the memoir for Audible, and we had fun creating content for our YouTube channel, <a href="https://www.youtube.com/c/ALS411">ALS411: Tips and Tricks for Disabled Living</a>. Our collaboration brought energy and excitement to our marriage.
We went on a few family vacations that were a day’s drive away. Todd’s favorite family memory is the last <a href="https://nevastory.com/roughing-it/">such vacation we took</a> in 2019, nine years after his <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>. We drove to visit the <a href="https://new.smm.org/" rel="nofollow">Science Museum of Minnesota</a> in St. Paul. He was able to roll around and look at the exhibits, and we watched a movie in an Imax theater.
We had a good time, but the trip was physically hard on him, and we knew it was our last vacation.
<h3>A new stage</h3>
Now Todd’s ALS has progressed so far that he’s too uncomfortable to leave our home at all. He no longer goes to Applebee’s, and he hasn’t been to church in a few years. No family vacations. No hockey games. No beach days.
Todd requires breathing support and gets winded if he talks too much. He&#8217;s so beaten down by the disease that he doesn’t even want to get out. And since he&#8217;s dependent on me for his care, I can&#8217;t go far, either.
At this stage, the disease is much harder for us to deal with emotionally. We still find little joys in life, but we aren’t active like we used to be.
ALS progresses so differently for people. For some, life with ALS is a sprint, and for others it&#8217;s a marathon. We&#8217;re in our 25th mile, and we are tired.
But our weariness isn&#8217;t entirely about this stage of disease progression. Todd has more function than my friend’s husband, for example. Todd can still speak, he only needs noninvasive ventilation, and he can move his neck as long as he’s properly positioned in his chair and parked on a flat surface.
Our state might be a matter of how long we’ve been dealing with disability, or it might be our personality and general disposition. Some people struggle to stay positive even during the early stages when they have independence. Others, like Todd, maintain their drive and passion for life even with severe disabilities. Todd remains fairly happy as long as he has projects to work on.
But he’s lost his drive. The main thing that keeps him going is his desire to see his kids grow up.
I&#8217;d encourage anyone who&#8217;s new to the disease to do as much as they can while they can do it, because life only gets harder — physically, for sure, but also mentally.
It was good for me to remember that we had a good run of at least 10 years of a pretty active life even after Todd’s ALS diagnosis. And my friend, the other caregiving spouse, was encouraged by how long we were able to be active.
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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.

Remembering our active life in the early years of ALS

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.

The power of distraction when dealing with negative emotions

If we&#8217;d anticipated my husband, Todd, needing <a href="https://alsnewstoday.com/columns/challenges-hiring-nighttime-als-caregivers/">nighttime caregivers</a>, we would&#8217;ve designed our accessible house differently, but we probably wouldn&#8217;t have been as happy with it.
After Todd was <a href="https://alsnewstoday.com/als-diagnosis-2/">diagnosed with ALS</a> in 2010, he told me, “We need to sell the house. We need to move near your family so you’ll have help.” At the time, we lived in a 1925 bungalow in Racine, Wisconsin, with our 4-year-old daughter and 9-month-old son. Our extended families lived in other states.
We thought Todd would have only a few years to live, but if he were to stay at home as his disability progressed, we’d need an accessible house. And I&#8217;d need a <a href="https://alsnewstoday.com/columns/i-am-als-community-provide-vital-support/">support system</a> around me, not only through Todd’s illness, but also after he was gone. We put our bungalow on the market, and we began planning to build on property next to my parents&#8217;.
To get ideas for the design, we visited a woman who&#8217;d recently lost her husband to <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. They&#8217;d built an addition on the main floor with a large bedroom and an <a href="https://www.youtube.com/watch?v=ucgcZxxH2b8&amp;t=7s">accessible bathroom</a>. They had plenty of space for equipment, and the main room had low-pile carpet for the sake of the wheelchair. The bathroom had a roll-in shower and space on each side of the toilet to fit a <a href="https://www.assistedliving.org/best-hoyer-lifts/">Hoyer lift</a> and allow room for people helping him.
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After a couple years of repeatedly lowering the list price, our Racine house eventually sold in a buyer&#8217;s market. With the help of a fundraiser sponsored by Todd’s co-workers and by withdrawing money from his 401(k), we built our accessible home in northern Michigan.
To keep the loan payments down, we had to limit our total square footage, but we allowed for extra space where it was really needed — 36-inch-wide doors, a 4-foot-wide hallway, and space in the master bathroom for Todd to turn his power wheelchair in a complete circle. We put hard flooring throughout the house, except for in a small office off the living room that we thought could double as a guest room.
But we didn&#8217;t anticipate <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">needing years of nighttime caregiving</a> help.
<h3>Creating space for the caregivers</h3>
After a few years of sleep deprivation from being up and down with Todd, I couldn&#8217;t do 24-hour care anymore. We started hiring nighttime caregivers, and they sat in our living room. That room was at the other end of the house from the three bedrooms, so it was difficult for them to hear Todd call for assistance, especially when they got drowsy and dozed off during the night shift. Todd kept his bedroom door open so they could hear him call, and I slept in another bedroom with our 5-year-old.
We didn’t plan a place for the caregivers to sit within close proximity to Todd.
If we&#8217;d known ahead of time that we’d need so much help, we might&#8217;ve designed the house with the master bedroom and bathroom next to the living room, where nighttime caregivers could sit. But I now know that wouldn&#8217;t have been ideal.
Even though we like our caregivers personally, it’s uncomfortable having somebody who&#8217;s not family or a close friend in our personal space. It felt awkward getting ready for bed and taking my nighttime vitamins in our open-concept living-kitchen area with somebody sitting in the living room. I didn’t like having to leave my bedroom at night to go to the bathroom or get a drink of water.
The following summer, we raised more funds and built an addition off the master bedroom with its own separate entrance. The caregiving suite functions as Todd’s office during the day, and it’s where he gets his twice-weekly physical therapy and massage. His shower aides also enter and exit through that entrance.
If I’m gone for the day, a daytime caregiver uses the kitchen to get meals for Todd. Otherwise, the rest of the house is exclusively family space, and we turned the original office into a bedroom for our son.
Having a separate space for caregivers has been good for the mental health of our children and me. And as an added benefit, it provides space to keep Todd away from the kids when they catch a bug. Even a cold is life-threatening for Todd with his <a href="https://alsnewstoday.com/symptoms-of-als/#Breathing_difficulties">compromised breathing</a>.
For some, ALS progresses so quickly that there’s no time to plan for rapidly dwindling months of disability, and others don&#8217;t have the financial resources to best manage years of disease progression. But among those who can get in-home care, many spouses express frustration over the loss of privacy. I encourage people to create private space, if possible, either through renovation or even just designating certain rooms as family space.
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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.

In designing an accessible home, we must consider livability

More than a dozen years ago, my friend Jana helped me process <a href="https://alsnewstoday.com/columns/wearing-grief-backpack-office-ladies/">my grief</a> after my husband, Todd, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>. She and I walked around our neighborhood, pushing our babies in strollers as our toddlers rode their bikes. Jana listened and didn’t offer platitudes. We now live 10 hours apart, but we still chat on the phone every couple months, and we exchange text and email messages between those calls.
She reached out by email a few weeks ago to say she was thinking about me after reading <a href="https://alsnewstoday.com/columns/finding-guidance-direction-living-with-als/">one of my &#8220;Joyful Sorrow&#8221; columns</a>. She shared a poem she&#8217;d written and asked how I was doing. She knows that our daily life is often difficult, and she&#8217;s listened to me process Todd’s ongoing decline over the years. I emailed her back and said we should chat soon, but I didn’t call her.
I thought about doing that on several occasions while I was doing housework. Even though I wanted to hear about her life, I just couldn’t bring myself to pick up the phone. My good friend is always an empathetic listener, but what is there to say about Todd’s <a href="https://alsnewstoday.com/what-is-als/">ALS</a> that hasn’t been said? And I didn’t have anything else going on in my life to talk about.
I just felt like I wouldn’t be good company.
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Many conversations center around work, vacations, or future plans. And since I don’t have those things, conversations can lag. I can ask questions and listen, but sometimes I’m reminded of what we’ve lost and what we can’t do.
And then I got an email that the band was getting back together. Four years ago, I joined the Yooper-leles, more than a dozen people from ages 8 to 80 who met every week to play songs on their ukuleles. That’s where I came to love the Beatles song &#8220;<a href="https://alsnewstoday.com/columns/finding-light-darkness-als/">Blackbird</a>,&#8221; and we even performed once at a senior living facility.
The group disbanded when COVID-19 hit, but last week we restarted after a three-year hiatus. I pulled my ukulele out of its case and tuned it. I reviewed the chord chart, which is a challenge for me because my fingers have developed muscle memory for guitar chords.
After the first practice session, singing and making music with the group, I came home feeling upbeat.
The next day I called Jana, and we caught up. And then I made plans to get together with another friend to walk at the mall.
Because ALS could easily consume my entire life, I need to make an effort to find outside sources to renew my mind. It’s good for my mental health, it&#8217;s good for my friendships, and it makes me a better <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregiver</a> and spouse.
Taking time away from Todd, even if I’m just a phone call away and can be home within 15 minutes, gives us something to talk about. It rekindles a part of <a href="https://alsnewstoday.com/columns/wartime-living-marriage-perspective/">our relationship</a> I miss so dearly, when we reconnected in the evening after spending our days apart.
<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: caregiver

Remembering our active life in the early years of ALS

The power of distraction when dealing with negative emotions

In designing an accessible home, we must consider livability

The satisfaction in having something besides ALS news to tell my friend