In designing an accessible home, we must consider livability

If we’d anticipated my husband, Todd, needing nighttime caregivers, we would’ve designed our accessible house differently, but we probably wouldn’t have been as happy with it.

After Todd was diagnosed with ALS 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’d need a support system 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’.

To get ideas for the design, we visited a woman who’d recently lost her husband to ALS. They’d built an addition on the main floor with a large bedroom and an accessible bathroom. 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 Hoyer lift 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’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’t anticipate needing years of nighttime caregiving help.

Creating space for the caregivers

After a few years of sleep deprivation from being up and down with Todd, I couldn’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’d known ahead of time that we’d need so much help, we might’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’t have been ideal.

Even though we like our caregivers personally, it’s uncomfortable having somebody who’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 compromised breathing.

For some, ALS progresses so quickly that there’s no time to plan for rapidly dwindling months of disability, and others don’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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