As much as she loved her 83-year-old father, 57-year-old Ginny did not love being his primary caregiver during his slow decline from Parkinson’s disease. She found it emotionally draining to try to soothe his frustration whenever he could not control his movements. Brushing his teeth, cutting his meat, and steadying him when he walked were a physical strain for her.
What Ginny found hardest during these caregiving years, though, was the deep disappointment she felt. The people she had counted on to be present and supportive instead stayed away. Even her father, who she knew loved her, did not always treat her well.
Ginny had expected him to be appreciative for all she was doing for him, but he was often gruff and sometimes snapped at her. She had expected her younger sisters to share the caregiving, but they continued to make lame excuses. She had expected her father’s doctors to provide more guidance, especially as the number of his medications tripled, but they took days to respond to her questions. Even her husband disappointed her. While he helped with specific tasks if asked, Gina thought a truly devoted spouse should step up without prompting.
Like Ginny, most family caregivers have at least some unmet expectations. They chafe whenever their sacrifices are taken for granted by others. They fume if their requests for help are ignored. Some caregivers in these situations feel justified in directly confronting the people who are disappointing them to try to make them change; they swear they will write these friends and relatives off entirely if they don’t come through. Other caregivers try to accept others’ limitations and shrug off the disappointment. But they, too, may wind up feeling abandoned and embittered.
How should caregivers respond when their expectations are not met? The right answer will vary from one caregiver to another depending upon many factors, including the caregiver’s personality, interpersonal style and relationships with the disappointing parties. No one answer is perfect; each has its pros and cons. Here are some things to consider when thinking through how you should respond to caregiving’s disappointments:
Baring your soul
Caregivers who feel neglected and hurt may let those feelings build up before deciding to tell others exactly how they feel — sometimes as impassioned pleas. One advantage of this approach is the decreased pressure they may feel from releasing their pent-up emotions. Another is that friends and family members, upon learning of the caregiver’s distress, may ride to the rescue by joining the caregiving team. But the disadvantages of this approach can also be many. If a caregiver makes herself vulnerable by asking for help and loved ones back away, then that caregiver may feel that others simply don’t care about them, leaving them feeling more alone and disappointed than ever. That rejection can be crushing.