To remodel or not?
This decision is very difficult and individualized because of the extreme variability in which ALS can progress. The typical lifespan of 90% of ALS patients is 2-5 years, and the typical remodel takes several months. I believe that excess stress worsens the symptoms of ALS and defeats the purpose of remodeling the home. Ultimately, the benefits of remodeling is a gamble.
First, there are some factors that should be considered:
- Time – Most contractors will promise you that your project will be done promptly. Unfortunately, meaning well and doing well are two different things. The projects that I’ve heard of involving other PALS took several months, rather than weeks. My project was done in weeks. I believe that any project that takes more than 3 months is probably not worth it. Your contractor must understand this and be willing to modify his schedule to accommodate this. Most will promise it, but will not be able to follow through.
- Cost – Will your remodel increase or decrease the value of your home for your surviving loved one? Do you have the financial resources or other resources available to you, such as VA or non-profit funding?
Benefits to remodeling your home:
- As your disease progresses, you will spend more and more time indoors. Having convenient access between rooms in your home allows you to participate in more activities around the house and helps you maintain some normalcy. I feel that normalcy in PALS is really important in maintaining emotional stability.
- You can shower rather than sponge bath in bed, again maintaining normalcy.
- Stress from remodeling can worsen your symptoms and stress out whoever else is involved. This can negatively affect your relationship with your spouse and family.
- Temporarily losing access to certain areas of your home.
- Remodel may not be done in time to be significantly useful to the person with ALS.
- Changes to the home may look unattractive and result in decreased value of the home.
- Dust and noise may worsen breathing and decrease rest.
Making your home wheelchair accessible:
- Doorways may be practically widened by replacing the hinges with a Z-hinge/offset hinge. If a doorway can be physically enlarged, a 40 inch opening is better than a 36 inch opening, especially when a caregiver is driving your power wheelchair.
– Counter heights – If your bathroom is being remodeled with a new vanity, I would consider a counter height between 30-34 inches (mine was 32 inches). Measure from the floor to the bottom of the counter to make sure your electric wheelchair can get under, including the armrests, before you make changes. I would probably not change the counter heights in the kitchen, since this is not practical for the long run.
– Handles on doors, knobs, and sink – I would only change the handles on things you use a lot. Again, from a long-term aspect, you may not be able to use your arms.
– Grab bars – May be useful in the short-run, but will not be useful when you develop increased arm weakness. It may be better to purchase an inexpensive shower chair with arm rests to push up on for the short term.
– Toilet - You can purchase an ADA height toilet for as little as $100 or purchase a toilet seat riser for as little as $30. The added height will make it easier for you to push up off the toilet, temporarily. However, in later stages of the disease, it will be unlikely that you will be able to stand to get off the toilet by yourself. If your financial resources are limited, it would be best to invest a bedside commode that has arm rests to push off of, if your funds are limited. It isn’t permanent and can be moved and used with a standard toilet. If your financial resources are not limited and you plan to remodel your shower and you have a wheelchair accessible shower floor, you can purchase a shower commode chair.
– Shower – Your legs will eventually become too weak to stand safely during showers, so you will need to shower while seated in a shower chair. I remodeled my bathroom to have a “roll-in shower,” which is similar to a walk-in shower, except that there is no threshold between the shower and bathroom floor. The tile on the floor is beveled to drain the water, and because there is no threshold, you can simply roll your shower chair right into the shower.