There is no getting around it, for nearly all people with ALS shortly after the diagnosis comes the need to address home modifications. The needed modifications could be minor at first, or the need could be significant. But in any case the modifications will feel significant because the changes being made will not simply be made to a house, condo or apartment, but to a home. Modifying a doorway on a house may be a straightforward tasks, but modifying a doorway on a home could mean removing the pencil marks and dates that show how tall children or grandchildren were when they were growing up.
There will be considerations beyond cost and functionality. There will be emotional costs as well. After factoring all these in, you can begin to plan for a home that makes sense for everyone. Modifications can also make life easier and safer for caregivers and other family members.
The first step in a home modification plan is to determine your short and long term priorities and to consider what you can budget for any projects. You will likely find it helpful to consult with your ALS Care Service Coordinator to discuss options as well as suggestions. A home safety evaluation can be obtained from an ALS clinic through Occupational or Physical Therapy. This is a thorough in-person evaluation of the home and will result in recommendations for equipment and/or modifications to the home. There are contractors who specialize in home modifications who can be helpful if you are considering permanent modifications to your home.
Prioritizing your needs and identifying solutions that work within your budget helps with financial planning and also gives you the necessary lead time to implement planned changes. Our chapter’s Jane’s Angel Fund grant program can provide financial assistance with home modification projects. The Chapter may also be able to assist with items from our equipment loan closest. Consult with your Care Services coordinator about equipment, and if you don’t yet have a Care Service coordinator, register with our chapter today.
As each person with ALS is unique, each home is unique as well. As such there is no one-size-fits-all solution for home modifications. There are however, some main areas you will want to consider when planning. And be aware that some more involved home modification options may require construction permits, so check with your local authorities before you or a contractor begin a project.
Depending on your home, a ramp may become needed to assist with getting in and out once a walker or wheelchair becomes necessary. Temporary metal ramps are can be rented or purchased. Some of these can be fairly lightweight and moveable as needed. A permanent ramp constructed of wood or cement may offer a more custom solution, but will be more expensive.
While getting in and out of your home is important, you’ll spend more time moving around the inside of your home. If you live in a single-level home you’ll only need to focus on that level. If you have a multi-story home you will either need to think about how to get up and down stairs or consider modifying the first floor so you do not need to go up or down stairs at all. Depending on your budget you may want to consider a stair lift system.
Moving around the main level will also require modifications. Decrease fall risks by removing rugs and other tripping hazards from the main living areas. Existing doorways and hallways may prove too narrow for wheelchair access. You can often make doorways wheelchair accessible by removing doors and trim, or replacing existing hinges with off-set hinges. You will also have to allow for or create open spaces for turning the chair around. You may also find that moving around is easier on hard surface floor as opposed to carpet.
Modifications to the bathroom will be important to both the person with ALS and caregivers. Grab bars are commonly used in/near shower and toilets. In addition, a raised toilet seat with arms can make transferring to the toilet easier. A bidet can assist with toilet hygiene when there is decreased mobility or strength. A sliding bath transfer bench is helpful because it can be used as a transfer bench for accessing the bathtub if a roll-in shower is not feasible. A hand held shower head can make rinsing off easier when sitting on a tub chair or bench. Being able to sit at and, if possible, roll-under a sink is very helpful. So are lever or touch faucet controls and anti-scald devices.
As the disease progresses, a person with ALS will likely spend more time in a bedroom. Space will be needed for medical equipment as well as equipment for transferring a person in and out of bed. As with other living areas, space for maneuvering a wheelchair will be needed as well.
Technology allows people to control different aspects of their environment. There are many apps that can be utilized from a phone or tablet for ease of accessing a person’s environment. A Nest thermostat can be easily installed in place of the traditional thermostat, allow the user to adjust the temperature of the home to their comfort. A Ring doorbell can allow the user to answer the door from anywhere in the home and see who is at the door. There are other technologies that allow the user to unlock the door, turn on a light, and operate the TV from an app.
Every home, every family, and every need is different. It is entirely possible that your specific needs may well vary greatly from the items described here. The stress of modifying a home can be alleviated by assessing your needs, considering your options, and planning for what is feasible for you.
It is important to remember that you are not alone as you face these and other challenges present by ALS. Our Care Services team is here to help you and connect you with others who can assist you as well. We want to help keep your house a home for everyone.