What to Do When Caregiving Finally Ends

En español

These three women in their 50s and 60s — clients of mine during the past year — had selflessly cared for their mothers in their own homes right up to the moment of their deaths due to complications from dementia. With caregiving suddenly over, these daughters felt some relief, but they also were deeply grieving. They then immediately began grappling with a question as disconcerting as it is common: “Since Mom is gone and caregiving is over, what should the purpose of my life be now?” After much struggle, they chose radically different paths forward.

Family caregivers typically don’t like to think about the challenge of what comes next, as if doing so would somehow hasten the death of the loved one they are caring for. But most caregivers allow themselves at least a furtive peek into the future, wondering what it will be like to once again have time to read, hang out with friends or return to full-time employment. When the funeral is over, the thank-you cards are written, and the parent's clothes are eventually put away or donated, the caregiver often faces not just lingering sadness but an uncomfortable void.

For those who were particularly invested in their role, research suggests that rates of caregiver depression may rise, not fall, after caregiving ends. I’ve heard former caregivers say that, after years of being single-mindedly consumed with caregiving, they don’t really know who they are anymore.

There are ways both before and after caregiving ends for family caregivers to lay the groundwork for an easier transition and come out on the other side with a stronger sense of themselves. Here are some ideas.

• Start planning now: It’s preferable to look ahead and even plan for your post-caregiving life rather than to pretend your loved one will live forever and caregiving will go on indefinitely. Those plans you start to consider aren’t likely to be very concrete; they may really only be glimmers of possibilities, perhaps even fantasies. But they are the beginning of a months- or years-long process of reflecting on who you have been and who you would like to be at some future point.

• Embrace how you have changed: Don’t see caregiving as an anomalous interlude from which you will recover. I have rarely met caregivers who simply resumed their old lives after their caregiving days were over. Those who tried found that the things that used to matter to them no longer did in the same way. Instead, consider how the experience has changed you — perhaps made you more compassionate and hopeful, knowing and capable. See caregiving as a source of lessons that will inform the rest of your life.

• Use your new skills: Through managing pillboxes, deciphering insurance statements and communicating with aides, physicians and difficult relatives, caregivers learn skills — many of them frequently overlooked — of organization, technical know-how and diplomacy. Those abilities have value for effectively navigating the thorny complexities of families and our byzantine health care and social service systems. I’ve seen former caregivers who felt so gratified by their mastery of the caregiving role that they actually sought out other family members to care for. (I call these folks “serial caregivers.”) Others volunteered at hospitals, took jobs as home health aides or became unofficial consultants to friends and neighbors in order to use their hard-won knowledge in helpful ways.

• Relish the values: The vast majority of former caregivers will not make caregiving their new vocation. But the values instilled by their caregiving experience will inspire and animate them nonetheless. Being a good caregiver requires increased tolerance for frustration and self-sacrifice, the will to make a positive difference in the lives of others and a commitment to bearing adversity in the hope of creating better days. Those are the same values at the heart of being an exemplary grandparent, boss and citizen. When the going gets tough again in life — and it probably will — you will have the confidence to handle it because you have done so before and you will carry others with you because you now know how.

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