When Caregiving Ends

According to AARP, there are an estimated 40 million adults in the United States providing care for a loved one. As any one of them can attest, the task of caregiving involves a series of ups and downs, twists and turns, and uncertainty all along the way.   From late night calls for help to visits to the emergency room after the latest health crisis to the cautious optimism that follows when a loved one has a “good day,” these moments tear at the hearts and minds of caregivers. What is certain is that, at some point, caregiver duties will come to an end. The impact of that moment catches many caregivers off-guard, and the flood of emotions can rival any tidal wave of stress brought on during the act of caregiving.

Studies and anecdotes about life after caregiving often sound as daunting as the caregiving experience itself. There’s a term used to describe the fallout that many caregivers experience after the passing of the individual receiving care: post-caregiver syndrome. Post-caregiver syndrome is defined as a state of burnout, and the list of symptoms—including feeling overwhelmed, constantly worried, often fatigued, fluctuations in weight, and becoming easily irritated or angry—often are warning bells for future despair.

Added to this is the lingering depression and anxiety that often follow the death of a loved one, compounded by the caregiver’s feelings of guilt that they could have or should have done more. The caregiver isn’t just reckoning with the loss of his or her loved one, but the feelings that come up with the loss of caregiving duties.

In my more than 30 years as a mental health professional, I’ve met with countless caregivers, both in individual psychotherapy and in my work as a support group leader. I’ve found that caregivers often feel torn between two competing emotions when the person they’re caring for passes away: on the one hand, there’s grief, the normal reaction to the death of someone close to them. On the other, there’s a sense of relief, the realization that the daily challenges of juggling multiple roles have come to an end.   After caregiving has ended, many caregivers feel adrift and aimless, unsure how to feel or what to do next.

Under any circumstance, grief at the loss of a loved one is a rollercoaster of emotions. Grief associated with the loss of a loved one that you’ve been caring for, however, can be more complicated. After the loved one’s death, many caregivers revisit and rethink their actions over the course of caregiving, feeling shame and guilt about what they could’ve done better. I often hear questions and concerns from clients about whether they could have forestalled the death, whether they did enough to support the loved one, and concerns about missed opportunities to connect in a more meaningful way. These are just a few examples of the extra burdens caregivers experience.

Often unmentioned is the experience of relief that many caregivers experience—but are reluctant to disclose, lest it be misinterpreted. I often hear from clients that the passing of the loved one has released the loved one from his or her physical burdens. “Now she’s at peace,” they might say. I’ve also worked with numerous caregivers who’ve recalled, guiltily, the sensation of their own caregiving burden being lifted after the loved one’s passing. They often ask me whether it’s normal to feel this way. I tell them it’s completely normal. 

Whether the death of the loved one is due to a slow and predictable decline or a sudden, unseen event, the experience of no longer having to rush to doctor’s appointments, answer calls in the middle of the night, sit for hours at the loved one’s bedside, and put off personal needs can lead to an almost shock-like state where the caregiver feels at a loss about what to do next. It’s easy to misinterpret this feeling of numbness as depression, but it’s more often the normal reaction of someone trying to reorient themselves to a lifestyle that feels foreign.

Adjusting to life after caregiving requires coming to terms with the contradictory experiences of grief and relief. Rather than pathologizing these reactions, we need to understand them as paths ahead.  When I work with these clients, I address and normalize these paradoxical feelings. It helps clients release themselves from the burden of guilt and substitute it with self-compassion. Unfortunately, many therapists’ views of post-caregiving life come from outdated models that focus on setbacks rather than growth.

Years later, I still remember my work with one caregiver who’d come to therapy to address the stress of trying to always be there for her aging mother. She reluctantly admitted that, at times, the work was too much, and that she worried about her own physical and mental health. When her mother passed away a few months later, she returned to therapy and admitted being unable to let go of her sense of having failed as a caregiver.  Rather than pathologize her reaction by educating her about caregiver burnout and offering some techniques for coping, I offered a reframe of the experience. “What if your mother, in a final act of love, chose to release you from your struggle by her passing on?” I asked. A few sessions later the woman told me that she’d thought about this concept quite a bit, that it had not only helped her move on, but helped her show empathy and give insight to a friend who was also struggling with an aging parent.

Following the lead of the positive psychology movement, which focuses on the character strengths and behaviors that allow individuals to build a life of meaning and purpose, we can instill hope for caregivers. We can show them how life after caregiving is not that of someone who was broken by the experience, but empowered by it. Here are some strategies you can offer these clients.

• Post-caregiving support groups. Many caregivers are familiar with caregiver support groups—often offered by local church groups, community aging offices, or professional counselors—but feel uncomfortable attending them after their loved one passes. While not a common practice currently, post-caregiving support groups are a natural next step in assisting the transition to life after caregiving.  The very act of establishing a group can offer clients a pathway to a healing journey.
• Education. You can educate caregivers on how to prepare for life after caregiving. Much like entering retirement, many people enter this phase unaware of both the challenges and opportunities that lie ahead. Providing a roadmap—both research and anecdotes—for the territory can calm anxious nerves about the “What’s next?” dilemma.
• Reframing. You can reframe the caregiving experience as one that will lead to growth rather than pathology. Research shows that caregivers who elevate the role to one of compassion and love are both emotionally and physically healthier. It is possible to honor both the stress and the strengths of caregivers, and promote healing rather than suffering.

Once you feel prepared to do so, you can also train other mental health professionals to counsel, coach, and support caregivers adjusting to life post-caregiving. Caregivers are the best instructors on how to help other caregivers, and drawing on the wisdom of their lived experiences, professionals can enhance their own skills and provide high-quality care.

In many ways, preparing for life after caregiving is like preparing for any major life transition. The fear, uncertainty, and stress that come with change are all common reactions that many people manage by drawing upon support networks and inner resources. But unlike other life transitions like retirement, empty nesting, marriage, and divorce, caregiving and the post-caregiving experience can often be all-consuming and lonely. Caring for a loved one is a uniquely challenging experience, and the process of letting go of this role requires a similarly unique leap of faith.

As therapists, we can make this process easier for caregivers by checking our own assumptions and biases. We need to abandon the idea that caregiving is an inconvenience or an interruption and understand the wisdom that comes from caring for another person. 

When working with caregivers, I often quote these lines from the poem “Time That Wasn’t Lost,” by Pablo Neruda:

So many wings flew around

The mountain of sorrow and so many wheels beat

The highway of our destiny

We had nothing left to lose

And our weeping ended

Upon reflection, many caregivers look back on their time spent caring for another person as profoundly meaningful and find hidden gifts in their acts of kindness. For me, working with caregivers has added to my professional sense of purpose and helped me find a deeper empathy for my clients. I know firsthand how caregiving often seems to demand a superhuman amount of emotional energy. There’s a term I’ve coined, exhaustlessness, that I think explains what that keeps caregivers going in the face of seemingly endless challenges. It’s an energy fueled by unconditional love, the love that Dante refers to in his Paradiso as “…the love that moves the sun and the other stars.” It has been my professional privilege to have the shared experience of this love with the many clients who’ve journeyed down the caregiving path.