For the last few days I’ve had an infection that required ac great deal of physical care and attention from Sheila. It is easy to forget how much of the burden of care falls upon a spouse. In fact, Sheila’s graduate dissertation addressed the emotional and physical consequences that injured the so called “well spouse”.
I am fortunate that as the ironic result of a skin wound several years ago and a health plan and physician that seek to avoid hospitalization and emphasized prevention, I have had a team of competent and lovely regular care providers come to my house. Ás soon as my physical therapist picked up my increased spasticity and I emailed her and my physician symptoms and instituted a care plan that included five providers coming to the house r today to initiate care and ease some of Sheila’s load.
What is particular noteworthy about my situation is just that—easing Sheila’s load. Much is made of the technological revolution in medicine and the impersonal nature of most hospital-based medical treatment.. The fact is, however, that our society is undergoing an enormous shift in the way technology is used to care for those with chronic illness. Homes and families are expected to function like medical settings at the same time that hospitals are attempting to bring the family into hospital care.
The romantic notion of the orientation toward care of most traditional cultures takes place under the nurturing eye of Hestia, goddess of the hearth and domesticity. Traditional home care reflects the unity of family, neighborhood, parish, and other voluntary associations ensuring some degree of mutual support in times of need. Unarguably, it has long been assumed that mothers or daughters would bear the burden of giving care. The assumption that hands-on care is within a woman’s sphere has long been accompanied by the expectation, often unmet, that husbands and sons bear the financial obligation to keep the house hold functioning and to maintain insurance or reserves to meet medical costs.
When the goal of home care was primarily palliative, aimed at reducing the immediate suffering of some one who was ill, the “treatment” was usually an extension of what was already within the home—cooking, laundering, companionship, helping out with small chores, occasional trips out to the doctor, the hairdresser, or visits with family and friends.
Even when done with the best of intentions and love, people are often unprepared for some of the physical, emotional, and financial consequences of providing extensive, as well as I intensive care at home for those with chronic illness. The movement of health care for the chronically, seriously, or terminally ill person into the home can be a form of exploitation and unexpected hardship, playing upon the desire of a family or individual to give comfort to the ill loved one within the intimacy and security of the home for as long as possible.
At the same time that they must continue to cope with the ordinary and often stressful tasks of everyday life, family members have to perform complex, frightening, intrusive, and painful procedures on child, spouse, partner, or parent. Such medical interventions formerly were either not available or done in medical settings only. It is one thing to change soiled bedsheets or assist someone in the bathroom. It is another to replace a tracheotomy tube in the throat of a child who is dependent on a ventilator for life sup port or to supervise the use of an infusion pump for a parent’s cancer.
What is the “carrying capacity” of the home environment? How much of a load can primary caregivers and individual family members bear? Time, a limited resource, is especially inelastic to those who must carry out all the tasks of caregiving as well as other daily roles. Taking care of individuals with ill ness at home has never been easy, but it is made even more difficult when expectations change about who will provide treatment and how.