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How Family Caregiving Can Alter Dreams and Goals Deferred

Post-caregiving life may be different than once imagined — in a good way

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Elia Barbieri

“I don’t want my mother to die,” said Valerie, my 62-year-old psychotherapy client, “but, when she does, I am looking forward to finally getting back to the rest of my life.”

She had put her work and social life on hold for four years to care for her mother, who was steadily declining from dementia. As her mother entered the late stages of the disease, Valerie began allowing herself to think about resuming her old life, including taking trips with her close friends and asking her old boss at a financial services firm for her administrative job back. In her mind, she was coming to the end of a long journey to the faraway land of caregiving and would soon be returning home.

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But after her mother died, “home” did not feel homey and Valerie did not resume being the old Valerie. Though she had assumed caregiving was just a side excursion from her “real life,” it turned out to be a transformation.

Her favorite activities and even old identity now felt foreign to her. She went on one weekend trip with her friends, but found they complained a lot about things, such as the quality of meals and hotel accommodations, that no longer mattered much to her.

Her boss offered to hire her back, but she realized that completing forms on a computer all day was not going to feel meaningful. She politely turned him down and started thinking about the work she was now meant to do.

Many caregivers, overwhelmed by the responsibilities and worries of day-to-day caregiving, dream as Valerie did of one day living as they once lived, picking up where they left off with old relationships and important pursuits. For some, this occurs. After a period of grief about losing their care receiver, they slip back into their old lives seemingly without missing a beat.

For many others, the dream they had now seems strange and misguided. They see the world differently. They feel differently about themselves.

It can be unsettling for caregivers to think that caregiving — especially when it lasts for years — may change them. They have committed themselves to doing good, not necessarily to transforming themselves. Yet change is frequently inevitable and unavoidable. How can caregivers prepare themselves to expect and manage the changes at hand? Here are some ideas:

Allow the journey to take you

As the old cliché goes, “travel broadens the mind.” Seeing new sights, tasting new foods and perhaps hearing new languages stimulates new thinking. The traveler doesn’t return home and unsee the soaring California redwoods or untaste bittersweet Mexican chocolate or a crusty French baguette. They retain a greater sense of the natural beauty of the world and human possibility that enriches their lives.

Think of caregiving as not just a trip but a cultural immersion in a previously unknown land of pills, complicated equipment and hard-to-comprehend medical lingo. It may also mean at least temporarily adopting new customs of organizing one’s day around helping a relative in need. Caregivers don’t return “home” and forget what they saw and learned. What they experienced, even if upsetting, broadens their sense of themselves as stronger and more competent than they ever thought before. This is not a change to be feared; it is growth to be appreciated.

Mark the changes

Travelers often write travelogues to capture memories of their trips nearly as they happen. Caregivers sometimes keep caregiving journals to document what they are facing and their thoughts about how they should respond. Rereading the journal entries in chronological order one day, many of these caregivers can trace how they stepped up over time to support a care receiver with increasing needs while gaining confidence as caregiving problem-solvers, health care system navigators and highly capable family members.

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Dreaming new dreams

Once broadened by experiencing new places and people, travelers are not always as happy kicking about their hometowns. Once tested by the challenges and high stakes of caregiving, caregivers may not find their old social lives and work to be as fulfilling as they once were.

That is what happened to Valerie. She was proud of the difference she had made in her mother’s life and wanted to use her acquired caregiving knowledge and skills to help others. Her old friends couldn’t relate. Her former boss couldn’t provide a position for her to make that kind of difference. It took her a year after her mother’s death to create a new dream for herself: She deepened her friendships with the people she had met in a caregiver support group. She volunteered in a local hospice before deciding to become a home health aide. Through this transformation, there were losses, such as more distant relationships with her longtime friends, but also gains. She embraced her new identity as a giver and healer, one brimming with self-esteem.

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