The stay-or-move decision can be one of the most significant choices an individual with ALS will face. This article outlines the key considerations necessary to make an informed decision about whether to remain in the current home or relocate to a new one. It does not address transitions to care facilities or institutional settings.
Access to care is an essential part of an ALS patient's living situation. Specifically, this includes:
Most large cities have dedicated ALS clinics with a multidisciplinary team consisting of physiatrists, pulmonologists, speech-language pathologists, occupational therapists, and others that are involved in ALS care. Smaller cities or rural settings often lack such dedicated clinics, though similar professionals may be within reach in various different locations.
Access to care is the most important consideration from the perspective of survival of the patient.
Autonomy refers to one's ability to enact change to the home. This includes:
A homeowner will generally have more autonomy than a renter. A home under the authority of a strict homeowner association will have less autonomy than one that is located elsewhere.
Without an appropriate level of autonomy, it may not be possible to make all necessary modifications to the home.
The existing home and any potential future homes should be evaluated for their suitability to support life with ALS.
The needs of an ALS patient continually evolve. As such, the differences in suitability between two different homes may increase over time. For example, a single-storey home or a two-storey home may be equal in utility when the individual is able to ascend and descend stairs. Once this is no longer possible, the single-storey home has significant advantages.
Comparisons between homes should be made from the perspective of middle and late-stage disease progression.
The cost and time required for home renovations should not be underestimated. In particular, accessibility modifications such as installing ramps, stair lifts, or accessible bathroom equipment can be expensive and disruptive to complete. Additionally, while these changes may be essential for daily living, they can sometimes reduce the home's resale value or appeal to future buyers.
Living near family is important to most people. The ability to easily travel diminishes as ALS progresses.
Proximity to family is especially important if family is heavily involved in providing care.
Mobility is an important aspect of a patient's living situation, particularly when it comes to transportation options such as wheelchair-accessible taxis, or public transit services designed for individuals with mobility challenges.
Living in an area with limited or nonexistent accessible transportation services, or with poorly maintained roads and sidewalks unsuitable for wheelchair travel, can severely restrict a patient's ability to move about independently or attend appointments and activities. This lack of mobility can significantly impact quality of life, access to care, and social connection.
With all else equal, staying put is more costly than moving. However, the cost of moving is a single, one-time expense.
Taking on a mortgage may not be a practical choice for someone near the end stages of life. Renting may be a more flexible option.
Close friends committed to supporting someone with ALS are more likely to stay connected, whether by traveling or keeping in touch from afar.
Unfortunately, not all friendships endure in the same way. Some friends and activity partners may gradually become less involved in the patient's life over time. This decline in engagement can occur regardless of physical proximity, as the progression of ALS often alters the dynamics of social interaction and shared activities.
Living near parks, beaches, and so forth can significantly improve quality of life for an ALS patient, especially in the later stages of the disease. With reduced mobility, being able to access peaceful settings such as these is ideal.
The decision to stay or move should be made carefully and thoughtfully, but as early as possible. Further disease progression brings increased difficulty in all aspects of moving, including organizing the move, and getting established in the new living location. Securing access to health services and other support systems takes time, as does making a modification to the new home.