How Many Wheelchairs Are Enough?

Six years ago, my 49-year-old wife, J., survived a severe hemorrhagic stroke that left her with limited ability to control her arms and legs. This event started a complex and often frustrating journey figuring out how to help her exist in this new reality. One major area of concern throughout has been mobility, which prompts the question, "How many wheelchairs are enough?"

A woman in a wheelchair being pushed

The Answer Is "It Depends"

I know "it depends" is not a satisfying answer, but each person's situation is different and selecting an appropriate & functional device should be dependent on that individual's needs. For some people with severe disabilities, a single power wheelchair may be sufficient assuming they can control direction and speed. For others with minimal disabilities, a standard manual wheelchair they can propel themselves may be all they need. In between is an entire spectrum of possibilities, and in some instances, such as for my wife, no single chair solves all of the issues.

This article discusses our ongoing journey through the world of mobility devices. Learn what you can from it, but note that your mileage may vary.

Our First Foray into the Mobility Device Landscape

J. was released from short-term rehab some six months after her stroke and was given a single old-style, outrageously heavy, way-too-wide manual wheelchair as a temporary measure until we could secure a chair built just for her. Immediately we noticed that this chair did not provide enough postural support for her, it was too wide to fit through many doorways in our house, and it was far too heavy for me to move in and out of the house. Its most appropriate use would have been as a boat anchor. It worked in an institutional environment, but it was not helpful at home.

Our immediate need was for a chair that would work around our house - a 1950s ranch. The good news was that the house was mostly on one level, apart from a stairlift needed to reach the garage and a few small ramps to reach the sunken living room and the patio. The bad news was that all the doorways were exceedingly narrow and the critical bathroom doorways even more so. Further complicating the issue is that J. is only 5 feet (152 cm) tall and does not have enough control of her arms to move a chair using the handrims on the wheels. She can use her feet to propel around a bit assuming she can reach the floor - more on that in a moment.

The long-term rehabilitation facility ordered a "custom" chair that was delivered about a month after J. arrived home. This new chair was supposed to address J.'s small stature and the narrow doorways, but it did neither. The suggestion I got from the occupational therapist was to remove the doors from the bathrooms!

Two Chairs and Soon a Third and a Fourth

My attention turned towards getting a lightweight chair usable for transportation outside the house. Insurance typically doesn't cover those, so I reluctantly dove into a full-scale internet search. I learned a lot about wheelchairs - almost as confusing as buying a mattress. There are so many things to consider, including height, width, seat height, weight, brakes, wheel type, footrests, cushions, how it folds, cupholders, umbrella holders, and more. I also learned that despite all the options, I wasn't going to find the perfect chair - I needed to just buy something - so I did. This purchase of a transport chair was the first of several (I've forgotten how many) over the next few years as chairs wore out or better chairs came on the market. The first chair was a solid, steel chair that folded flat, had hard rubber wheels, and brakes right on the rear wheels. It was heavy, but it seemed like it would take a lot of abuse – and it did receive abuse going in and out of the car, and across all kinds of terrain. The hard wheels made for an awful ride – whoever decided that a brick sidewalk was a good idea never rode in a wheelchair across it. The hard wheels also wore down which made the brakes less functional. Since we live on a hill, unreliable brakes increased the chance that J. would roll down the driveway into the wetlands. It was time for a new chair!

I'll spare you all the iterations, but it suffices to say that I constantly looked for a lighter chair with a softer ride with reliable brakes that folded compactly. Our latest chair, while not perfect, is better with larger wheels to handle rough surfaces, both hand brakes and wheel locks, and it can fold flat. And it's under 20 lbs.! It is holding up well and I suspect we won't need a new one until next year.

Next, a Custom "Custom" Chair

When J. survived her stroke and eventually came home to be under my care, I knew nothing about being a family caregiver. I did offer occasional care for my parents, but this was a different level of complexity. I found it hard enough to figure out how to care for J.'s (and my daughter's) daily needs, without considering all the choices I'd need to make to purchase durable medical equipment (DME), supplies, accessories, and more to help keep J. comfortable and safe. I knew nothing, and I didn't get much help from the doctors, social workers, therapists, or vendors.

One day, about 18 months after coming home, a new physiatrist suggested that we could order a custom wheelchair and that enough time had passed so that insurance (Medicare) would cover it. Music to our ears! We had already widened one bathroom door to accommodate a standard chair, but even after taking the door off, the current chair wouldn't fit into the bathroom where J. could shower. Sadly, our joy was short lived. After consulting with a mobility specialist, we learned that even a hemi-height chair (hemi means the chair offers a seat height 2" to 3" lower than a standard chair) was still not going to allow J. to put her feet on the ground once we added a 2" to 3" cushion. Then we found that a chair narrow enough to fit our 22" doorways was too narrow for J. to sit comfortably - this didn't matter much, since there are few if any chairs that narrow.

Regardless, we ordered the new chair to give J. more comfort and support, and I found if I removed the handrims that J. couldn't use, I could squeak through the narrow bathroom door and roll her up to the shower.

But Wait, There's More

Now we had a usable chair for inside the house, and another for transport outside the house. Sometimes, if J. is going to be seated for a long period at an event, I'll take the inside chair out on trips so she will be comfortable.

Then, after my dad's passing, we inherited his power wheelchair. After borrowing an accessible van to transport it to our house, I quickly realized that it was going to be unusable. I couldn't get it into the house, and even if I could, the house layout is not conducive to using it. I couldn't use it outside unless I acquired an accessible vehicle, and J. wasn't even able to control it adequately. It was a total bust, and it's still sitting in my garage.

I then turned my attention to supplementing J.'s weekly physical therapy with other forms of exercise (remember, she's only 50 years old at this point). We acquired a recumbent cross-trainer exercise bike for home use like the one she used at physical therapy. J. was able to use her arms and legs to get something of a workout on this device, though her stamina was very limited.

I happened to virtually attend an Abilities Expo (an event for the disability community) and I found a recumbent sports wheelchair with pedals and two-handed steering controls, like the exercise bike. We arranged for a test drive and found that J. could manage to get it going and control the steering. It was a slow, difficult process, but she enjoyed it and got a good workout. This bike was a game-changer. Now I could take J. down to the beach, or a parking lot, or even an event, and she could maneuver her way around until she ran out of energy.

What Does the Future Hold?

The good news is wheelchairs are getting better. They are becoming more specialized, lighter, sturdier, and more comfortable. The bad news is that they are expensive, insurance typically only covers one at a time, and when faced with a long-term situation like J.'s, you can expect to replace them every few years. If you have flexible insurance or sufficient financial resources, you can get fully custom seating systems but the rest of us have to select from tailored off-the-shelf models.

For all the time I spend thinking about wheelchairs, my deepest desire is to find ways to keep J. out of the wheelchair and away from a sedentary life. I'm hopeful that her mobility will improve over time as we are able to take advantage of new mobility and wheelchair developments. For example, I just learned of a golf cart that has a stand system where J. might be able to be moved up into a standing position and swing a golf club - she was an avid golfer before her stroke.

I've barely touched on all the nuances of dealing with mobility issues, and you may have a completely different experience. My advice to all is to ask a lot of questions of the doctors, nurses, aides, therapists, and vendors; test drive everything you can; realize that inexpensive items may not save you money when you must replace them more quickly; and keep an eye out for new developments in wheelchair technology. Most of all, place safety and comfort above all.

About the Author

Marc Lawrence's wife suffered a massive hemorrhagic stroke in February 2017. Marc has since written as his experience as a male caregiver on his blog, Caring for a Spouse. The content on his blog is primarily meant for men who are caregivers to family or partners. While the information may be applicable to both male and female caregivers, Marc does not profess to understand all issues that a female or other gender-fluid caregiver faces. Marc also advocates for all family caregivers in general and male family caregivers specifically with respect to State and Federal program support.

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Date: 8/29/2023 12:00:00 AM

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