Caregiving is an ambiguous term, like recovery. Since I have always worked toward the complete recovery of all of my patients, the "new" discovery that we should join the recovery movement and somehow convey to our patients and their families that a person "can" recover is, to me, mainly a PR tool. It won't make a person go from sick to well overnight, and it won't cure a person without the proper treatment.
In the same way, good care should always be part of the prescription for every patient. The questions facing us today refer to informal caregivers--families, friends, and neighbors--who provide the support and the 24/7 care needed by patients who are suffering from mental in-capacities such as Alzheimer's, chronic debilitating illnesses such as uncontrolled diabetes or angina, or chronic deteriorating illnesses such as Parkinson's disease or long-term schizophrenia. Specifically, this month's questions were inspired by a study of hundreds of in-home caregivers in five U.S. cities (Ann. Intern. Med. 2006;145:727-30).
The caregivers were ethnically diverse: 212 were Hispanic or Latino, 219 were white, and 211 were African American.
For some of the caregivers, an intervention addressing caregiver depression, burden, self-care, and social support through 12 in-home and telephone sessions over 6 months helped improve their quality of life. For example, the prevalence of clinical depression among the African American caregivers was lower among those in the intervention group than in the control group (12.6% vs. 22.7%). Hispanic and white caregivers in the intervention groups also experienced significantly greater improvements in their quality of life than did those in the control groups.
Clearly, the burden experienced by these informal caregivers is enormous, and for those who have never had the personal experience of having a sick person totally dependent on them--not only for getting their meds on time, but also for feeding, bathing, bowel and bladder function, and transportation--it can become the most burdensome responsibility in life.
It is not unusual for caregivers to be exhausted and angry, and to feel guilty about being angry at a loved one who is helpless. This guilt can lead to very serious depression, further exhaustion, psychological complaints, and illnesses, and the depression can get much worse if or when the patient dies. The caregiver is stuck with serious and severe self-recrimination, often very deep and unremitting self-blame, and worsening symptoms of depression.
Unfortunately, many doctors ignore the caretaker, who often has important information to impart. In my humble opinion, what the caregiver has to say is much more important to the life of the chronic dependent patient than are heart rate, blood pressure, or other physiologic symptoms related to the patient's illness.
It is important to remember that the caregiver needs praise, support, and appreciation--some feedback that makes the hard work and the effort seem worthwhile. Human beings thrive on praise, and the caregivers need a pat on the back every once in a while to help them keep going. Keep in mind that there are about 1 million cases of elder abuse in the United States each year. Many of them, I feel sure, are the result of caregiver disgust and rage.
Years ago, we all felt the primary duty of the nurses on a ward was to provide TLC. Although that aspect of their job has not disappeared entirely, nurses nowadays are busy with documentation and with making the nurse diagnosis, double checking medications to avoid mishaps, and a plethora of other tasks. Doctors, too, when they had fewer definitive therapeutic measures, gave more of themselves to both patients and their families. House calls were a blessing for families overcome with worry. Seeing the doctor approach the house was enough to bring relief. Anxiety-easing comfort was a major role for generalists and specialists. …