Burden of Care

The burden of caring was not limited to their siblings, however. Their sense of responsibility extended to the parent with the drug problem. They understood that drugs made their parents vulnerable and made many efforts to counter this. 

Another study interviewed families of schizophrenic patients, asking specific questions about the families responses to the medications and the medication s effects on the families. Families hope that the medications will lessen their relatives suffering and ease the burden of care (Stebbin, 1995). In a similar study, the researchers concluded that medication had a small but significant effect on the patients families (Rosenheck et ah, 2000). The primary impact was to help reduce negative symptoms in the patient and thus reduce the family s burden. However, the schizophrenic patient who has reduced symptoms may then be released from the hospital and placed in the care of the family, thus transferring the responsibility for the patient from the hospital to the family. 

Interdisciplinary communication and more consistent patient care, including frequent communication with the family, make the burden of caring for the troubled family member easier. One study concludes by stating, An alliance between professionals and families holds great potential for maximizing the positive effects of [medication] therapy (Stebbin, 1995). 

Severe disability was a usual outcome for ALS patients who used LTMV for two to five years or more. Although suctioning of the tracheostomy increased the burden and intensity of home care (2), most family caregivers reported that slow communication and immobility were the primaiy factors in the burden of care, rather than caring for the tracheostomy. 

Family members who received adequate help when it was needed had experienced significantly less burden of care than those without help. Some family caregivers reported no burden of care, despite having loved ones with severe disability, if they had the finances and benefits to receive hired help at home everyday. They either had built-in family support or were forced to hire caregivers. Life satisfaction of family caregivers also depended on whether their loved ones were satisfied. Patients who had acquired the ability to cope with the physical and emotional aspects of the disease often had peace of mind. That enhanced the family caregivers ability to cope and still enjoy life. Despite severe disability, many families continued to respond positively to the patient. 

If the onset of respiratory failure is foreseeable, such as in progressive NMD, end-of-life issues should be discussed early on. One survey found that if patients had previously decided to have a tracheostomy, 88% would do so again compared with only 38% of patients who had not decided before an acute deterioration (38). This emphasizes the importance of discussing the issue of tracheostomy early with patients who have degenerative neurological conditions, so that they can be prepared for the respiratory crises and not undergo an unwanted tracheostomy or hospitalization if they would prefer to be cared for at a hospice or at home. Families should be involved in these decisions, if possible, as they bear much of the burden of care, often at the cost of their own personal lives (16). 

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