How does ALS affect relationships and partnerships?
ALS can place a heavy strain on an existing romantic partnership and family relationships. It is impossible to make a “blanket” assessment or prediction, as a romantic relationship is characterized by a high degree of subjectivity, individuality, and variability (even in the absence of an underlying medical condition).
A partner’s ALS poses a serious challenge for both partners in the relationship. The diagnosis alone—and the prospect of a life-shortening illness—usually upends their life plans and requires them to redefine their shared life story.
Reactions to the diagnosis and to the reality of progressive motor deficits (grief, despair, anger, hope, worry, and optimism, among others) are experienced and shared together. The person affected may experience feelings of guilt for burdening their partner’s life with their own illness. For partners who are not affected, feelings of pain and compassion may dominate.
In addition to the emotional toll, there is a burden on daily life caused by the demands of caregiving (loss of the ability to care for oneself), communication barriers (loss of speech), and loss of autonomy (loss of function in the arms and legs).
The limitations on speaking and writing lead to changes in communication. Nonverbal communication (through facial expressions and gestures) is also altered by motor deficits and must be readjusted. Due to slowed movement patterns, all daily activities are modified and require increased logistical, temporal, and emotional effort.
Intimacy and sexuality are significantly complicated by the psychological, emotional, and physical effects of ALS. The important balance in a relationship between effort (“relationship work”) and joy (“happiness in the relationship”) is challenged by these factors.
A relationship can and should be “protected” through various medical, social, and care-related measures. For example, the burden of care (the strain associated with providing care) can be reduced through the early use of assistive devices (transfer and mobility aids) and by involving professional care providers (home health care or skilled nursing).
Providing relief and time to “catch one’s breath” for the caregiving partner and other family members is crucial to maintaining the vitality of a relationship. Ideally, the person receiving care should actively offer the caregiver the necessary space, relieve them of feelings of guilt, and set aside their own interests.
Shared experiences and trips (with appropriate support from assistive devices and people, as well as the selection of suitable accommodations) can help recharge the energy needed for a healthy relationship.
In addition to the stresses described above, a “new quality” of relationships has also been observed repeatedly. It is characterized by an increase in the intensity and depth of a relationship, shaped by an awareness of the time remaining in life, as well as by gratitude, emotional connection, and affection.