ALS often requires adjustments to your living situation. As your medical needs increase and your ability to perform everyday tasks decreases, you may need professional care on a daily or even around-the-clock basis. This care may be provided in your own home, but might also require moving to a different home or facility.
Living setting options for people living with ALS include home care, assisted living facilities, nursing homes, and adult foster care.
For most people, living at home is the preferred option. And most people with ALS are able to live at home throughout most or all of the disease’s progression. It’s typically the cheapest option, and allows you to stay in a place that is familiar and comfortable to you.
To continue living at home, though, some changes will likely be required. At some point, you may need to hire in-home help. Even if you have a spouse or loved one caring for you, the tasks can eventually become too much for them to handle alone.
For professional in-home help, most people choose to go through an agency. For non-medical services, such as help with housekeeping, a non-medical home care agency or companion agency can match you with an in-home helper. For in-home medical care or therapy, a home health agency can set you up with a nurse or therapist.
You can also hire in-home help on your own, without going through an agency. In fact, going the independent route is usually cheaper than using an agency. The trade off is that it also requires more work on your part. You have to find the candidates, interview them, conduct background checks, account for the employee’s income taxes, and potentially buy additional insurance coverage. These are all tasks that are normally handled by a home care agency, and are the reason why such an agency usually charges a little more.
Besides getting someone to help you live at home, you may need to make physical changes to the home itself to improve mobility and access. For example, you might need to add a wheelchair ramp at the entrance or install grab bars in the bathroom. A whole range of assistive equipment could be needed within the home to manage symptoms. If you need help obtaining such equipment or making your home more accessible, please contact your local chapter’s Care Services Manager.
Assisted Living Facilities
If it becomes no longer feasible to live at home, an assisted living facility may meet your needs. Assisted living facilities provide a place to live and caretakers to help you with your daily living activities. They do not provide the level of intensive nursing and medical care offered by nursing homes, and therefore usually cost less than nursing homes (though they are typically more expensive than living at home).
Of the different living arrangements available, nursing homes provide the most services and the highest level of medical care. A nursing home may be utilized by people living with ALS who are in advanced stages of the disease and need around-the-clock care.
Adult Foster Care
Similar to the foster care system for children, adult foster care matches adults in need of care with licensed families who are able to care for them. In this scenario, the person with ALS would live in the foster family’s home. The person with ALS pays the foster family for room and board.