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When my late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the interior features — a quirky chimney that twisted up through the middle of the living room and an adjoining milk house where dairy from the farm’s cows had once been stored. The home and property were cozy and peaceful. It was a special place to live, and we felt fortunate.
<figure id="attachment_90595" aria-describedby="caption-attachment-90595" style="width: 278px" class="wp-caption alignleft"><img loading="lazy" decoding="async" class="wp-image-90595" style="margin-right: 10px;" src="https://alsnewstoday.com/wp-content/uploads/2024/03/wedding-day-285x380.jpg" alt="A couple stands side by side, both laughing, inside of a milk house on their rented property. They're dressed in wedding attire — the woman in a long white dress holding a bouquet, the man in a gray suit jacket and pink button-down shirt." width="278" height="371" data-wp-pid="90595" /><figcaption id="caption-attachment-90595" class="wp-caption-text">Juliet Taylor and Jeff Sarnacki on their wedding day at home, 10 days after Jeff&#8217;s ALS diagnosis in 2018. (Courtesy of Juliet Taylor)</figcaption></figure>
Ten days after Jeff’s <a href="https://alsnewstoday.com/what-is-als/">ALS</a> diagnosis, he and I got married in the milk house. Our neighbor, who had become a fast friend and confidant, officiated the short ceremony, and afterward we went to our favorite deli for a wedding breakfast. I wore a rented dress and carried flowers from the grocery store. It couldn&#8217;t have been more perfect.
So it was with sadness when we realized that we wouldn’t be able to stay in our beloved home. No one knows the <a href="https://alsnewstoday.com/living-with-als-2/">timeline of their ALS</a>, and in Jeff’s case, his progression was fast. Within 10 months of diagnosis, he needed a <a href="https://www.youralsguide.com/power-wheelchairs.html">power wheelchair</a>. At 425 pounds, the chair was too unwieldy to traverse the chimney in the living room or navigate the narrow hallways. Each entrance to the house had steps — not many, but just enough to make getting in and out impossible.
With regret, we realized we would need to move — yet another loss in the constant barrage of losses that ALS brings. Neither of us wanted to go, but we realized it was necessary for Jeff’s safety. This was not just an emotional loss but a financial one as well. ALS is staggeringly expensive, and renting had been a perfect solution for us, allowing us to save our nest egg for other needs.
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<h3>An emotional search</h3>
We approached our home search with little enthusiasm. Our needs were specific and a constant, piercing reminder of what ALS was taking from Jeff: no steps, no thresholds, wide doorways. Our focus was, as it needed to be, on safety and physical well-being.
We enlisted the help of our dear friend Lindsay, who was a local real estate agent, with what we knew would be a challenging search for a new home. Together the three of us developed a game plan: Jeff and Lindsay would identify possible homes online, and Lindsay and I would go see them. If we felt like the home could work — that he could get in and out safely, that the home was truly <a href="https://www.youralsguide.com/als-home-accessibility.html">accessible</a> or had the potential to be — we would go back with Jeff so that he could see it in person.
The home search was more emotional than I expected. Because we were sad to be leaving a place that we loved, nothing felt right. Some homes carried their own sadness, as well — ramps that had been constructed hurriedly or haphazardly, unusual modifications that had been made to accommodate wheelchairs and hospital beds, a reality we knew all too well.
In one case, a home looked perfect online, and when we arrived, all of the solidly constructed ramps had been removed to make it appealing to a wider array of buyers.
<h3>Home is what you make it</h3>
Discouraged after four months of house-hunting, and after several falls in our original rented home, Jeff expanded our geographic search. In doing so, he found a little cottage on Maryland’s eastern shore, about 25 miles from our original place. At 70 years old, the one-level home had been remodeled a few times. Its wide kitchen and great room offered space to navigate Jeff’s wheelchair, and there wasn’t a single stair in sight. It was situated on a calm creek where Jeff could enjoy nature. It seemed perfect.
<figure id="attachment_90597" aria-describedby="caption-attachment-90597" style="width: 380px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-90597 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/03/new-home-380x285.jpg" alt="A man reclines in his power wheelchair on a patio behind his home. He's petting one dog with his left hand while another dog lies a few feet away, and looking out at a river." width="380" height="285" data-wp-pid="90597" /><figcaption id="caption-attachment-90597" class="wp-caption-text">Jeff Sarnacki enjoys a day outdoors with Rudder, left, and Sailor at their new home in 2020. (Photo by Juliet Taylor)</figcaption></figure>
Lindsay and I pre-screened the home before bringing Jeff, and she and I were both optimistic. When Jeff rolled in on a visit the next day, he was silent. He checked out all the rooms with ease, and while Lindsay and I were talking in the living room, we noticed he was already in the backyard, which he’d been able to reach without assistance. I was hopeful.
When he came back inside, he gave both of us a smile and a thumbs-up. About a month later, aided by nearly 40 friends who came to help us move, we settled into the place where I’m writing this column today.
While it wasn’t the home we thought we’d wanted, it turned out to be perfect — a place where we made memories, visited with loved ones, and most importantly, lived safely and peacefully with Jeff’s ALS. I learned in our search that, when <a href="https://www.als.org/navigating-als/living-with-als">living with ALS</a>, flexibility and perspective are everything, and home is what you make it.
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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.

The long search to find an accessible home while living with ALS

Last weekend, my 13-year-old son, Isaac, and I spent about five hours replacing transition strips between my husband’s bedroom and the hallway, the master bathroom, and his office.
When we built <a href="https://alsnewstoday.com/columns/what-consider-building-wheelchair-accessible-house/">our accessible home</a> over a decade ago, we put hard flooring throughout the house in anticipation that my husband, Todd, would need a <a href="https://www.youtube.com/watch?v=yfITlFFBaRw&amp;t=608s">power wheelchair</a> because of his <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. Todd and I laid bamboo flooring in the bedrooms ourselves. At that point, ALS had already weakened his arms, but he was still able to walk. He cut the bamboo planks using his chin to help push down the chop saw blade, and he coached me in snapping the boards together. We laid tile throughout the rest of the house, and between the tile and the bamboo flooring, we had transition strips that were about 1/4-inch high.
The transition strips weren’t an issue when Todd was walking, nor when he was driving his wheelchair with a joystick. Their height became more of an issue when he started using a <a href="https://www.youtube.com/watch?v=lCFNl7GXivw">head array</a> to control his chair, and especially after his neck weakened. For the past couple of years, when he moved between rooms, the transition bumps jostled his neck and occasionally sent him careening into a door or door frame.
We put much thought into the design of our accessible home. We knew that some features, such as the roll-under sink in the bathroom, would only be useful for a time. Our light switches are relatively low on the walls, and that was helpful when Todd had some use of his arms.
We have a kitchen island with an overhanging countertop, and Todd used to eat there; he put up the foot rest of his wheelchair, pulled up to the island, and elevated his chair. Now he stays in his chair and reclines a bit, and <a href="https://alsnewstoday.com/columns/preparing-meals-tricky-als-caregiver/">I feed him</a>.
It’s impossible to design the perfect house for someone with ALS because the disease continues to change and the requirements for accessibility are different over time.
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When Todd could no longer transfer out of his wheelchair and into bed or onto the toilet, we installed ceiling tracks so that we could use an electric overhead lift. We built an office addition after we started having nighttime <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregivers</a> come in to turn him at night. The latest challenge has been those transition strips.
Todd found low-profile aluminum T-molding online and ordered it. He&#8217;d hoped the project would be simple — just pulling up the old bamboo transition strips and gluing the T-molding down. But home projects are never that simple. The gap between the tile floor and the bamboo flooring was too wide. Neither the hardware store nor the flooring store had wider flat transition strips, and we couldn’t find the product we needed online.
Todd had some ideas on how we could make the narrow ones work. We added aluminum edging strips in the gaps between the bamboo and tile floors. Isaac cut the metal transition strips and the edging. I got rid of the silicone that had held down the old transition strips using adhesive remover, and I used a sander to buff the edge of the floor that had been scuffed from the old strips.
Isaac then mixed up the grout and spread it in the channel. We let that dry overnight, and the next day, I glued down the new strips. I also varnished the part of the floor I&#8217;d sanded.
Now, without the big bumps, Todd drives in and out of his bedroom saying, “This is so nice. We should have done this years ago.”
It was a small but significant modification that makes a big difference in his daily life. And now our house is perfectly accessible again — until the next challenge. <a href="https://alsnewstoday.com/living-with-als-2/">Living with a progressive disability</a> requires constant problem-solving and creativity.
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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.

Living with ALS requires ongoing problem-solving and creativity

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.

Tag: accessible homes

The long search to find an accessible home while living with ALS

Living with ALS requires ongoing problem-solving and creativity

In designing an accessible home, we must consider livability