En español | No one told 54-year-old Carol she'd be the caregiver for her mother, Kathleen, who was declining from arthritis and Parkinson's disease. It was as if her relatives had voted her into the job at some mysterious family meeting to which she hadn't been invited. Carol felt the unspoken expectations of her three older sisters, aunts and Kathleen herself to drive her to medical appointments, make her meals and keep her company.
At first, she felt mostly proud and special playing this role. But as Kathleen needed more assistance over time, including help with grooming and toileting, Carol began to feel burdened. It was true, as her sisters sometimes reminded her, that she didn't have her own spouse and children to take care of. But she had a demanding job and close friends with whom she wanted to spend time. “You are Mom's favorite,” her sisters replied whenever Carol asked them why they weren't helping more. After two years of being Kathleen's assigned primary caregiver, Carol began to wonder if this was a privilege or whether her mother and sisters were using her.
In the majority of families caring for an older adult, the bulk of the care does fall on one person's shoulders. Research suggests that different families use different rationales for determining which person that is. In many, according to studies by Cornell University sociologist Karl Pillemer, it is the youngest or oldest daughter. In others, it is simply the person who lives closest and/or has the most available time to pitch in. Some families choose the adult child who received the most financial support from the parents in the past and “owes” them care now. With some cultures, it is the oldest son's wife who is expected to care for her in-laws.
Regardless of the method by which the primary caregiver is chosen, if she is required to make too many sacrifices while others contribute little, then she may become tired and resentful. Feeling used may even make her feel embittered and lead her to angrily confronting family members she thinks are manipulating her. How can these primary caregivers not be or feel used? Here are some ideas.
Don't expect equity
Caregiving families are not rowing teams in which each member pulls hard on the oars to propel the boat forward. They are often more like canoes in which one person paddles and the others enjoy the scenery. That primary caregiver, sweat pouring down her brow, may feel this is unfair. But everyone knows she won't put down her paddle and let the boat drift toward the rocks.
Make small, direct asks
It is not a good idea to run headlong into the family resistance you are likely to face if you call a family meeting to air your complaints and demand greater justice. It is more effective to go to family members individually, ideally in person, with small requests for help. For instance, Carol can ask her oldest sister to take Mom to the doctor because she has a big work deadline to meet. She can ask an aunt to pick up groceries. It is harder for family members to say no when the task is easily doable, and Carol looks them beseechingly in the eye. The end result may be that a new pattern is set in which previously absent relatives become accustomed to pitching in.
Talk with the care receiver
Sometimes family members justify their lack of involvement by saying the care receiver only wants to be helped by the primary caregiver. This is usually true; care receivers do play favorites with caregiving tasks, such as bathing, with those they most trust. But the primary caregiver can still talk with the care receiver about getting other family members involved. For example, Carol can tell her mother that she knows she is most comfortable having Carol by her side but that her other daughters want to play their parts. If Mom gives her blessing to this notion — and directly asks her other daughters to assist her — then they probably won't continue passing the buck to Carol.
Feeling ill used or well used
In psychology, we say that if you can't change the situation, then change your reaction to it. If Carol's family members refuse to change, then it is wise for her to try to stop feeling like the victim and look toward the gratifications of her essential role. Perhaps her sisters will be wracked with guilt one day that they didn't do more for Mom before she died; perhaps not. Carol will know she did her best to do what she thought was right.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.