ALS From Both Sides


Home Remodeling

Don't sell, buy, build, or remodel until you can look ALS in the eye and deal with it!

These things are emotionally tough to do, but the last thing you want is to find that all your work and expense was short sighted. Not all the modifications have to be made right away, but before you begin with any modification, have a good idea of what you will need down the line so moving or a major redo's won't be necessary.

Adding wheelchair ramps is usually the first on the "to do" list but this is exactly the kind of thinking to avoid. That doesn't mean that ramps should not be the first modification made. It means they shouldn't be done until you have looked ahead and made a plan that will address all future needs. This section is not arranged by what changes need to be done first, or even what changes are the most desirable. It is intended to go from room to room to come up with a complete plan.

To evaluate the space, a tape measure is going to be needed. Two pieces of cardboard, one 4 x 4 feet to simulate a Hoyer type of patient lift, and another about 45 x 28 inches to simulate a power wheelchair, will be very helpful. The spec sheets on wheelchairs don't include the leg and foot rests so the length is more than the specs say! Same with the width. Armrests and joysticks add to the width of the chair so a chair is wider than the frame size given in the specs. 45 x 28 inches is close to the actual size of a power wheelchair-- unless you are going to need an extra wide chair. Lay the card board on the floor and "drive" it around the house to see if the doorways and hallways work.

Beginning with the structure of your current home (or wherever you plan to live as the ALS progresses), the first thought is whether it can work at all. Any home can work, but some, especially single story, are certainly more convenient and adaptable than others. So where do you start in planning for the future you don't even want to think about? Bathroom access is the first thing most people worry about but is a distant second when you look beyond the short term. Bathroom access, ramps, etc. are pointless if you can't get out of bed safely and conveniently, so, first look at the bedroom.

Bedroom

If your bedrooms are all upstairs in a two-story home, staying upstairs after it becomes difficult to get you downstairs is not at all a workable plan. Getting you out for any event will become infrequent. In a Medical emergency it would be risky and in case of a fire very possibly fatal. In less drastic concerns, you would be isolated from day to day household events. Caregivers would be up and down the stairs repeatedly. There are ways to make the upstairs accessible but they are expensive and may not be workable in some home layouts. (More on this next.)

Regardless of whether an upstairs or downstairs bedroom space will be used, the room has to be accessible in a power wheelchair. An open space at least 5 foot square is needed to turn a power wheelchair around without making the turn in short back and forth moves. If the room is entered straight on, a 30 inch doorway will work. A 28 inch doorway can be widened about 2 inches by using offset hinges.

The most common problem is that the room is off a hallway and the wheelchair cannot make the turn to get through the doorway. A test drive with your power wheelchair cardboard pushed along the floor -- vroom, vroom -- will quickly show if a wider doorway will be needed. When widening a doorway, the light switch is generally close to the door and needs to be moved a few inches. That is an easy fix, but heating ducts or even plumbing pipes may have to be moved. That is more involved but usually possible. A replacement doorway 36 inches wide is generally manageable but going even wider using two bifold doors is a better guarantee that it will be wide enough. Pocket sliding doors are another possibility but require the full door width to be unobstructed space inside the adjacent wall.

The bedroom should be able to accommodate twin beds with at least one of them not pushed up against the wall. Couples can stay in a regular bed at first, but a hospital bed will be needed down the line. Separate beds may seem unnecessary, but there will come a day when a hospital bed is the best. Hospital beds have important features the caregiver will need.

  1. They are single beds that allow the caregiver to work from either side.
  2. The entire bed can be raised to a height that makes it easier to rise from sitting on the side of the bed to standing.
  3. The height also prevents back strain for a caregiver moving, turning, bathing the patient.

Usually a caregiver spouse is sleep deprived and sleeping in a separate room can help. Even though they will be up and down during the night, a separate room without the patients every sound can be better. Having the caregiver sleeping upstairs has them on the stairs when they are half asleep or out of hearing range if the call system fails (out of reach, dead batteries, not turned on) is too risky!

A critical consideration in a bedroom is the type of lift that will be used to transfer from bed to chair and back. The choices are between a Hoyer lift and an overhead lift.

hoyer1The standard patient lift is frequently called a Hoyer lift. "Hoyer" is a brand name and there are many other brands. When planning for this type of lift space can be an issue. A Hoyer type of lift is about four feet long. The width is nearly that when the legs are opened out to prevent tipping while in use. Use your Hoyer size cardboard and see if you can fit and turn it on the floor in the hallways and rooms you will be working in.

Transfers from the bed to the lift to a wheelchair require space at the bedside for the lift, and space for the lift and wheelchair to be positioned for the transfer. Since a power wheelchair is also about four feet long it will take a lot of space for this -- and more if you want the lift and wheelchair out of the way between uses. It will be possible to roll the patient in the lift out of the bedroom for the transfer, so that can reduce the space needed in the bedroom. A lift will also require space when not in use so that also needs to be considered in the available space.

A Hoyer or similar lift is hard to push and turn on carpeted floors. A change from carpet to solid flooring will make it much easier.

Overhead lifts are a good choice for patient transfers, especially when space is an issue. Transfers are easier and faster than with a Hoyer type because they take the patient directly from bed to wheelchair or commode. There are three types of overhead lifts available.

Ceiling mounted lifts do not take any floor space and can be installed flush with the ceiling. They may be tracked to go from room to room. Construction work to strengthen or support ceiling joists may be necessary.

Free Standing Lifts can be self-installed with no attachments to walls or ceiling needed. Quickly dismantle to move.

Wall Mount Lifts mount to the wall along side a toilet, bathtub, or bed so don't take floor space. Require reinforcement of wall stud.

In addition to space and flooring requirements, there are other things to consider about Hoyer type of lifts. See Patient Lifts.

When you start adding up all the electrical equipment that is likely to be used in the bedroom, it is surprising: lights, electric hospital bed, suction machine, nebulizer, electric blanket, fan, TV, CD Player, call system, electric or battery powered lift, and charging outlets for the vent, wheelchair, and every other battery operated thing that requires recharging. (Label every battery charger and cable with the name of the piece of equipment it goes with or you will end up in Charger Hell.) Thankfully not everything will be in use at once, but check what other rooms are on that circuit. Living rooms can be electricity hogs too. TVs, sound systems, computers and all their peripherals, lighting, space heaters and fans. Kitchens definitely would not be good companions on a circuit with either your bedroom or living area! Few houses have enough outlets in the right places for what you need to plug in so it is very helpful to add outlets or power strips. Having the power supply throughout the house evaluated is a good idea. The most that is likely to be necessary is adding a circuit to reduce the load on another circuit or circuits.

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Stairs

A common misperception is that a stair lift will get you up and down the stairs in a two story house even as ALS progresses, so let's discuss stair solutions for two story homes.

  1. A chair lift in the stairway may work for some time, but there will come a time when a person with ALS (PALS) cannot sit comfortably and safely on the small stair lift chair. Neck and trunk weakness will leave you a rag doll in the chair which is not designed with trunk support, a head rest, recline, or a foot rest large enough to keep your feet in place.
    Although a chair lift can easily be configured for stairway with landings and turns, space at the top and bottom of the stairs is just as important. If it can be configured to allow plenty of space at the bottom to bring a power wheelchair up to, or ideally, along side the chair lift seat, transferring to the chair lift will be easier and extend the time the lift can be used. Otherwise, the usefulness of the chair lift ends when walking with assistance from the wheelchair to the chair lift is no longer possible. At the top of the stairs, another wheelchair or chair on wheels (a commode chair with arms and adjustable height works well) is needed to get to the bedroom and bathroom. Again, having room to transfer is important. Depending on ALS progression, this can work well, but when standing to transfer becomes difficult, all these transfers are very hard on caregivers and may not be possible. A Hoyer lift can do the job but again space is an issue -- and you will need one downstairs and another up.
  2. Another possible solution is a wheelchair stair lift. Similar to the wheelchair lifts used in vans, they move the wheelchair and passenger up and down a flight of stairs. Many brands are available and some will fit a staircase less than 36" wide. They do require more space at the top and bottom of the stairs for loading the wheelchair but some brands offer the ability to curve to the outside of the stairway for loading. The platform has edges that fold up to prevent rolling off, and the platform folds up to allow normal use of the stairs. The weight limit for these is generally 600 to 650 pounds. The weight of power wheelchair can be anywhere from about 200 pounds to 400 or more. That can make it unusable for some.
  3. An elevator is a great solution but expensive, though probably cheaper and less disruptive than moving. More importantly, an elevator is a solution that increasing weakness won't make unusable. Finding space for an elevator can be difficult since it has to be large enough for a power wheelchair and an attendant. Backup power for the elevator as well as inside the elevator is necessary. The IRS considers elevators (but not stairway chair lifts) as adding to home value so none of the expense qualifies as deductible.
  4. Similar to an elevator, an vertical wheelchair lift may work. With the same configuration as a wheelchair lift in a van, but possibly without room for an attendant to ride with you, it may be possible to fit it in a smaller space than an elevator. It does not have to be placed along a stairway so it can lift directly into an upstairs bedroom. Although many vertical lifts are limited to lifting 6 feet or less, there are others that can lift a full story or more. It can be left open or enclosed (which may be required). Because it isn't mounted at an angle to a wall, weight of the passenger and chair is less an issue.

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Bathroom

Bathroom concerns are high on the list of home modification needs. A hard look at the reality of your situation is important. How fast is the ALS progressing? A big, beautiful spa bathroom is wonderful but how long will the PALS use it? All too often the progression of ALS leaves only a few months where the new or remodeled bathroom is used. Is there money readily available for a big bathroom project or will your family be paying off a loan after you are gone? Feeling that a big bathroom project is essential may be just a manifestation of denial of the reality of progression and life expectancy.

The resale value of a home will go up with the addition of any bathroom, but an accessible and handicapped equipped bathroom may not be a big selling point. If the bathroom is located off a bedroom it will be a plus. If it is awkwardly placed off a living room or family room, steals significant space from another room, or turns a three bedroom home to a two bedroom, the resale goes down. Buyers should consider that they are likely to need it down the line, but they don't!

Showering

Even when I used a sliding bench to slide sideways into the shower, it was not worth the effort! I ended up exhausted and shivering. My husband/caregiver was wet and sweating. I gave it up in favor of a wash up while sitting on the toilet and a shampoo at the sink which we modified to a roll under vanity. When transferring to the toilet later required a lift, we switched to a simple bed bath of my lower half. One soapy wash cloth, one wet, and a hand towel. No basin of water to spill! Dress my lower half and use the overhead lift to get me into my wheelchair. Off to the bathroom for the rest of my bath with me at the roll under sink. Shampoo, tooth brushing are so easy there! Finish with dressing my top half. I am clean and dressed in half the time and with no lifting and neither of us are exhausted.

Some PALS have been able to shower up until the end, but for most showers get further apart as bed baths become all that is tolerated. Showering a wheelchair person requires extra transfers and is far more work and much more time consuming than a good scrubbing while sitting on the toilet. A bed bath is even less exhausting for the patient, especially when breathing problems begin. No one needs a daily bath. A wash of pits and bottom and a shampoo every other day will do fine between weekly full body wash ups. A good soak in a shower would feel great but unless your progression is proving to be very slow, a bathroom remodel or addition price tag isn't justifiable if cost is at all a consideration.

Whatever the plan, at least some bathroom remodeling will likely be needed. When there is no downstairs bathroom, the best option is to add one but this may not be possible for financial or space reasons. No bathroom on the main floor will mean a lot of trips upstairs for the caregiver to empty urinals, bedpans and commodes, but all other bathroom activities -- bathing, shampooing, etc. can be done in the kitchen or in bed. A half bath may exist or be possible to add and may possibly be made accessible for a wheelchair. Even if it is not accessible to the wheelchair, it will be a timesaver for caregivers.

Space and Layout Considerations:

  1. When figuring out the space needed and layout for the bathroom, I suggest drawing it out full scale (including toilet, sink, etc. and any doorways and hallways the chair must navigate) in chalk on your driveway and do some wheelchair and transfer simulations. What looks good on paper doesn't always work as expected -- even if designed by a contractor! Because the room must be set up for the eventual power wheelchair, plan for a wheelchair length of at least 45 inches to include the footrests. For testing, your power chair sized of cardboard can be moved across the layout to check the space.
  2. If the problem with an existing bathroom is mainly a lack of floor space to maneuver, you might consider replacing one wall of the bathroom with a set of large (6 ft total) double folding doors. That opens the bathroom up to give a lot of "elbow room" when needed and yet allows the space to be returned to its normal use at other times.
  3. It may be possible to convert a tiny half bath into an accessible space. Double doors can turn a hallway into part of the bathroom for wheelchair maneuvering -- and back to a hallway when the doors are closed. See "An Accessible Half Bath" to see how we did it!
  4. Allow plenty of space for your assistant to stand squarely in front of you and take a step or two backward as he/she lifts you. We were surprised at how much space that took -- even though we had plenty of experience with narrow bathrooms where John ended up plastered against the wall and unable to maneuver once he had me up on my wobbly legs!
  5. Have the entire toilet moved away from the wall behind it. A power chair cannot be backed up to the wall enough to be side by side or even positioned at a good angle with the toilet if it is against the wall.