What do You do When Caregiving Ends?

By Stuart Feinhor

First, you cry. Not, as caregiver, for the first time—this you've been doing for days, weeks, months maybe—but as something else, entirely. For against your will you have crossed a threshold into a new world, one that emerges—slowly, as out of a dense and midnight fog—the very moment the one you have loved and cared for, with all your heart, with all your soul, with all your might, lets slip that last, that final, that most awful breath. It's a world marked indelibly and permanently by the black and white of "before" and "after." What do you do when caregiving ends? First, you cry.

And then? And then you cry some more.

And then? And then there are things that must be tended to. But how, in this new and fearful world, can you possibly face them?

For caregivers in particular that the end is not surprising does not mitigate the shock; it is only natural. Yes, it might have been expected, though not necessarily at that moment. It might have come too soon (and in the moment after it has always come too soon). It might have occurred in your presence, and it might have come in your absence. It might have come, as it so often does, with some sense of relief (and its attendant guilt, but that is natural, too). Yet the shock you undoubtedly experience is as real as anything; indeed, it can feel, then, more real than the death itself. In mourning, everything is normal. And yet the state of shock is also the thing that sometimes, for some people, helps makes it possible to do the things that must be done. Autopilot.

Another thing that makes it possible to do the things that must be done are the people whose job it is to do them: the medical professionals and the clergy and the funeral directors, most importantly. They understand not only what you are going through as a mourner, but also, in many cases, as what you are—a caregiver. Or, most shatteringly, as what you are now—a former caregiver. If you are very lucky, these people will be able to guide you through the necessary steps of the process in a way that brings comfort and a gentle touch.

On August 31, 2004, when my beloved Aunt Marilyn died, I had been her devoted and dedicated caregiver for six and a half years, during which her physical and mental health had run a varied and unpredictable course, not unlike that of many, if not most, care recipients. On August 31, 2004 Marilyn had been in the last stages of her deeply cherished life for five long, dreadful days, following a series of small strokes and kidney failure and other complications. On August 31, 2004 at 1:34 in the afternoon, our life together was one of "before," when being her caregiver was the great blessing of my life. At 1:35, our lives together ceased and mine became one of "after." I had crossed that threshold, just as she had crossed...

But because I knew her death was imminent, and because I knew she was to be buried in another state, and because Jewish law prescribes that a person be interred within 24 hours, if possible, I knew that I had to begin making arrangements, for her travel, for my travel, for the funeral, before she had even breathed her last. I knew and so I did: autopilot. And the people whose job it is to make these things happen guided me with a most welcome gentle touch. It is not that any of this was easy—indeed, it was surreal and painful; but I found that once I had put things in motion, I was largely able to let the professionals take care of me. Remember this.

And so there was the rotten task of clearing out her room at Boulder Good Samaritan, and the travel, and the funeral and the burial in Dayton, and the memorial service in Boulder, and a thousand other things, and I felt lonely and lost. I was a mourner and my grief was all encompassing. I was no longer Marilyn's caregiver.

But I was not alone. Other members of my caregivers' support group whose lives have transitioned from "before" to "after" have graciously shared with me what are sure to be familiar experiences.

Karen, who had cared for both of her parents over an extended period of time and place, expressed that, "It's a mixed bag: relief and sadness... coupled with grief... You feel responsible for these people, like a child... You stay in the old habits. For weeks after you say to yourself, ‘Oh, I should stop over...,' and then you stop yourself. It's hard to transition out of thinking about doing for them. You feel like 'an empty-nester.'"

Donna, whose caregiving for her husband ended when he died in his late forties, talked about the "loneliness of suddenly not having somebody there, [of] talking to the person still," and of "losing the person and the role." What she has done in her efforts to move on has been to stay busy, to stay in her field (psychology) and to be "giving of myself to [caregivers] who need help." She has "seen a lot of suffering people and has learned a lot from them." (Donna is one the facilitators of the caregivers' support group that I still attend.)

John, who cared for his mother, who died in 2004, and who caregives still for his father, expressed that he has learned to "communicate with others in similar situations [because he is] in tune with people in need." And he has learned patience.

And Penelope, whose "focus and M.O." had been for more than fifteen years to care for her husband of thirty-five years while he suffered from Alzheimer's, said that, "After the fuss and flurry of everything—funeral directors, friends, etc., I have this block of time." And even though she manages to find "new distractions," she speaks of this "block of time" as an inescapable reminder of the once-filled hours, like the lingering shadow of something that used to be. She continues to find value in coming to the caregivers' group "to help others," yet questions when the time not to go will come. Penelope spoke for so many when she told me that she is able to take her experience as a caregiver to "new venues," which for her includes serving as a Stephen Minister, through her church.

What do you do when caregiving ends? First, you cry. And then you realize, through your tears and grief and mourning, that it doesn't end. It may be "after," but the life you shared with your care recipient and the lessons she taught you with undying affection and gratitude for your six and a half years of "before" are forever. Like memory. Like caring. Like love.

Stuart Feinhor was a loving caregiver to his Aunt through the end of her life, and is writing a book about his caregiving experiences.

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