The emotional toll on the caregiver is too often minimally appreciated, as friends and relatives focus only on the patient and the tragedy of his or her diminished life.
While the caregiver responds to what can seem like endless inquiries of concern from family members and friends about the ill or aging family member, there is often little attention to how the caregivers themselves are holding up.
Sense of Pressure to be Upbeat
Caregivers, like those around them who fail to appreciate the cost of constant giving, may come to feel that what they are experiencing is “nothing compared to what their loved one is going through”. Yet, like the sick patients they are caring for, caregivers are likely to feel short-changed by the illness, and resentful about the toll that it is taking. Anger and frustration may lead to guilt (“How can I feel these awful things when my partner is so sick?”), and the guilt, in turn, may create pressure to be continually upbeat and cheerful, with the caregiver fearing that were his discouragement to be detected, it might negatively impact the patient. The ‘cover-up’ can then backfire, with both parties feeling that they cannot honestly share their feelings.
Diminished Support from the Sick Partner
Added to the toll of increased responsibilities is the fact that when the caregiver is a spouse, he or she no longer has a healthy partner available for support, comfort, and soothing. The caregiver must go it alone, especially during the worst periods of crisis.
Added Strain when the Patient is Unmotivated
Strains on caregiver can be aggravated further when the patients shows minimal motivation for self-care — failing to participate consistently with rehab activities, refusing medications, ignoring basic hygiene, or failing to tell doctors about symptoms that may need attention.
Pain of Watching a Loved One Suffer
The strain on the caregiver can be made even greater by having to stand by helplessly to witness a loved one in severe pain. Though human beings have an adaptive biological mechanism built in for minimizing the most painful moments of our own lives (think how quickly a new mom, swearing during the pain of delivery that she will never have another child, is ready to give birth again), our protective mechanisms for watching pain in others are considerably less.
Recently, a couple was talking with me about very rough medical patch they had gone through. The wife, describing her week-long stay in a hospital said, “Actually, after the first eight hours or so, most of it wasn’t that bad.” Her husband, who had slept in her room all seven nights, said, “I’m glad that’s how you remember it.” Even when she was too out of it to experience (and remember) her pain, he was not. Her painful groans in a semi-conscious slumber, left him with almost no sleep.
The patient, at the moments of greatest pain, may be partially out of touch with its magnitude, and further protected by adaptive minimization when it is stored in memory. On the other hand, those who watch someone in pain can suffer enormously, and may have considerably more vivid recall of the details. Studies of veterans suffering from wartime PTSD tell us that the traumatizing effects of seeing a buddy injured can be as (or more) severe than the effects of receiving an injury oneself.
Emotional Toll Needs to be Recognized and Addressed
The toll is enormous, the need for support great. Therapists who specialize in working with families members of the chronically ill can help, as can the many support groups listed in my earlier paper in this series.