Ideas for building a new home for someone with ALS?

[Will4]

Hi All, didn't seem to quite be a category for this question, but this one seemed close enough.

My mom was diagnosed with ALS in January, and we have made the decision to move her and my father to my area since its not really possible for me to move their way. Currently walking is become tough for my mom, although not impossible. She has been using a scooter and this is working nicely. But this move will be good, as myself, wife and two teenagers will all be around to help as needed, although my dad will be the primary caregiver. So my current house is too small to take in 2 more guests. I am currently under contract to build a new house which should be ready by the end of 2015.

So my question, for people who have had to remodel their homes to deal with this disease. What can I have done now that will make life easier for my mom and her CALS? The area they will occupy is a walkout basement, that will be accessible without any steps using a sidewalk. Since snow can be a problem in the winter I will also get some type of ramp in the garage that will defeat the three steps we will have. I have arranged for larger doors in her bedroom, bathroom, and the garage entrance. Her bathroom will be larger, and the shower will be big enough to roll into, just a small lip to get over. I'll also have a stair lift put in so she can easily get up to the main floor from inside. The stairway will be a straight shot up with no curves. Does anyone have any other suggestions I have not thought of? Since construction is starting soon, I can still make changes, the builder has been very accommodating so far, I don't want to miss anything that I can easily get done now.

 

[gooseberry]

Try to get doorways to be 36". As she needs a wheelchair it will make things easier. Bathroom- roll under sink. Roll in shower, bidet seat for the toilet are all helpful. Non slip flooring/smooth flooring like tile or hardwood flooring is best for wheelchair use. Lever faucets or ada approved are good faucet choices. Most by kohler are ada approved. Handheld shower is a must with no tub.

Kitchen- again i would say roll under sink, smooth flooring etc. Might want to consider roll out cabinet baskets, stove with knobs in front, dishwasher with front controls, same for washer/dryer. Refrigerator could be a french door with pull out shelves.

Lever door handles no knobs. Drawer pulls. Doors that open out not in so she cant be trapped.

Generator for power backup for breathing equipment down the road.

 

[gooseberry]

You will also want to put in grab bars in the shower and around the toilet. Throw rugs are a trip hazard do you will want to remove those. If you must have them make sure they are rubber backed and dont slip. Night lights too

 

[cheerleader]

Will, you have been very thoughtful in your planning. Gooseberry's list is very complete. I would add two things:
1. Sensor faucet- turns on by movement or touch
2. When selecting a bidet, get one that has the night light function so it is well lit. Also, worth the extra money to get the heated seat, temperature control on the water to cleanse her, and having the warm air drying function.
Would also recommend that you stayed tuned in to time lines with the contractor. 6 months can be a LONG time if the disease progresses quickly.
A good and caring family is a true blessing for her. Hugs to you all in this journey. Donna

 

[Nikki J]

For the shower as well as a showerhead that can be used as a handheld get a pole so the height of the showerhead can be adjusted ( the showerhead slides up and down)

 

[gooseberry]

One other thing on the bidet seat- you might want to get one with a remote

 

[texastracy]

Ramps at all exits - fire doesn't know who is handicapped.
Single level house. Stair lifts become unusable be PALS.
Think about using a hoyer lift when planning the bathroom. You need room to maneuver.

 

[BlueandGold]

You might also consider a heat lamp in the shower stall. We get chilled pretty easy and when we do our muscles stiffen up. The sensor faucets are also a great idea. Best of luck to you and bless you for helping your mom and dad.

Vince

 

[Diane H]

Planning for an overhead lift is essential and with new construction you can easily assure that the joists are prepared with the strength and added support to run the lift the same direction as the joists if that is better for the layout. Also with new construction, it should be possible to arrange to have the overhead track transport her from the bed to the bathroom without extra transfers. This will require the bathroom entrance be the full height to the ceiling. Any header will block the way for the track. Space for turning and positioning a power chair in the bathroom is very important. The general rule for a wheelchair is 5 feet of open space but that is minimal for a power chair that will be over 3 feet long. A roll under sink with a faucet with a sprayer or retractable hose isn't standard in a bathroom but will be ideal for shampooing on days when a shower is too time consuming. We found that when still doing wheelchair to toilet transfers, it was very helpful to have the toilet installed away from the wall rather than up against it as it usually is. A scooter or wheelchair is so much longer than a toilet that it requires stepping backward before sitting. That single step will double the difficulty of transferring to and from the toilet. Add a heater in the bathroom because getting out of a warm shower can be frigid for someone who isn't doing any of the work.

Lots of electrical outlets in the bedroom are needed. Every piece of equipment will need charging regularly. Ideally the spot where she spends her days will be in the center of household activity and have a good view out a window if only for watching the weather. It is hard to arrange for a view into the kitchen as well but anything that keeps from being isolated from the activity in the house will be a definite plus.

If a garage is part of the construction, an extra tall door to accommodate a van would be nice although most women do fine in a smaller wheelchair adapted vehicle.

 

[GregK]

> I'll also have a stair lift put in

The stair lift will only be useful while she has core strength. Once that fails it will be a problem keeping her upright in the lift.

I had a lift installed but that's an expensive option.

 

[cheerleader]

Don't think anyone mentioned to get the higher toilet. New ones can be obtained with smooth sides instead of the inset sides with the little rubber knobs. Much easier to clean- and that is important.

 

[gooseberry]

You really might consider having them on the main floor Instead of the bottom floor. As progression occurs, including your mom in family activities of daily life will be important. As others have said the lift will not work as she progresses. You might want to consider wider sidewalks, 48",

You might also want to think about vehicles. Toyota sienna's have a mobility assist seat that you can get if you special order a vehicle. The seat comes out of the van to an easier transfer level. Or you could look longterm for a van or other wheelchair accessible vehicle and pwc.

 

[djbailey]

lots of comments on the bidet. Don't forget to have the contractor put an outlet behind the toilet to plug it in.

 

[GregK]

> have the contractor put an outlet behind the toilet

A GFI outlet.

 

[gooseberry]

The roll in lip free shower, the bidet with was and dry functions lighting,remote and ground fault circuit wiring,l the higher toilet, the ada touchless or sensor faucet, smooth flooring,roll under sink,planning for a lift, extra electrical for bidet in bathroom and extra in bedroom, generator, handheld shower head on adjustable bar,rolling shower seat or built in bench, heat lamps or room specific heating....good luck,


I just tried to consolidate many of the ideas