Addressing the Chronic Sorrow of Long‐Term Spousal Caregivers: A Primer for Counselors

For the fourth time this year, Jen (a pseudonym) has driven 2 hours to a large metropolitan hospital to admit her husband Stanley, a 73-year-old retired coal miner, who suffers from episodic and acute heart problems. This hospital admission for cough, fever, and shortness of breath is alarming but familiar to Jen; Stanley's debilitating health problems have been escalating over the last 20 years of their 51 years of marriage. Jen relinquished a promising career as a mine administrator to become Stanley's constant caregiver during his 20 years of chronic illness. Although she also has some health problems, she has so far managed the situation with his help. Now Jen is faced with a new health scenario. Stanley's hospitalization reveals the advanced extent of his illness, and when he returns home, he will be required to use supplemental oxygen and a wheelchair or walker. Stanley reacts to his diminished capacity with confusion, refusal to eat, and anger. Meanwhile, Jen tries to cope with the discouraging news and prepare for the increased demands that will be required to maintain Stanley in their home. Jen is aware that she cannot provide Stanley with the quality of care that he could receive in an assisted living facility; but she is also aware that such care would deplete their meager savings, and she believes him when he says repeatedly that going to one of "those places" would kill him. Jen now lies awake at night worrying that she is depriving Stanley of the care he needs by keeping him at home. She feels that she should be doing more for her husband, but laments that she "can't get motivated to do much of anything these days. "At the same time, she knows that if she should succumb to the current stressors of his current level of care, Stanley would be left without anyone. Sometimes, she is angry that Stanley's health has "all but mined their lives," but she also feels it is wrong to think that way and is later guilty for hay ing those thoughts. A former colleague and friend from the mining office is worried about Jen and suggests that she seek counseling about this dilemma. She agrees to do so but insists that no one is going to "talk her out" of her responsibility, as Stanley's lifelong partner, to keep him at home. * Long-Term Spousal Caregiving This previous case example (a composite, spousal caregiving dilema derived from typical geriatric case) highlights the unique stressors and stress-related responses of a growing number of aging individuals such as Jen, who are experiencing the multifaceted burdens of providing long-term care at home for their physically or mentally disabled spouses. The American Association of Retired Persons has reported that 66% of aged, infirm, or disabled individuals receive extended custodial care entirely from family members; one third of these caregivers are spouses, largely female (Feinberg, Wolkwitz, & Goldstein, 2006). Presently, there are roughly six to eight million of these "long-term spousal caregivers" among the White (74%), African American (11%), Hispanic American (10%), Asian American (4%), and other (1%) populations in the United States (Gibson & Houser, 2007). Their ranks are expected to climb steadily in the coming years. Medical advances in the areas of disease prevention, early diagnosis, and intervention are continuing to extend the average life span (Rand Corporation, 2004). Simultaneously, the rising costs of medical and custodial care and the established benefits of being in the home environment have dramatically increased the need and desire for home-based informal caregiving. Besides reducing often prohibitive costs of institutional medical and convalescent care, the increased autonomy afforded to patients in home care has been shown to have intrinsic restorative and healing qualities (Duke & Street, 2003). Furthermore, innovative telecommunications technologies and home-based drug delivery systems have expanded aspects of patient care beyond institutional walls with minimal risk to the quality of that care (Arnaert, Klooster, & Chow, 2007). …