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How Family Members Can Cope with Sudden Caregiving

Training and preparation for future medical issues can help caregivers regain some control

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Up until that moment when my father’s brain cancer revealed itself, he seemed perfectly fine.

A lawyer, devoted father and husband and a former college athlete, he spent his days arguing cases in court, playing baseball with me and my younger brother and swimming miles of laps in a YMCA pool. Then, one fall evening when I was 14, he turned to a neighbor visiting our home to make a comment about a TV show and out of his mouth came a string of gibberish — word fragments and random sounds that made no sense.

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Cancer cells had infiltrated the language center in his brain. In an instant, he had lost the ability for intelligible speech. 

His life and the life of my family changed suddenly. My father could no longer work and soon had trouble seeing and walking as his brain cancer spread.

The rest of us became his caregivers. My grandparents watched my father during the day because my mother, who had been a homemaker, had to get a job to support us.

I came home from high school each day to take my turn sitting with my father to keep him company until my mother came home from work. The feeling in our home turned from shock, at first, to grim stoicism as my father declined and, eventually, to grief. Within a year, my father died.

Caring for someone with dementia, the most common form of caregiving, is different than this. That terrible disease inches up on families, progressing slowly and allowing family members time to grasp the new reality and adjust. But other devastating conditions, such as heart attacks, strokes, spinal cord injuries, and terminal cancer diagnoses, rear up suddenly, often transforming average family members into caregivers overnight.

Things at first feel out of control for these new family caregivers. They scramble to understand what has happened to their loved one and why and whether life can ever go back to the way it was.

Even as they attempt to find their footing in this new terrain, trying out new skills and roles, they can’t help but wonder fretfully: If medical catastrophe struck our family once, could it suddenly happen again? Another stroke or heart attack? More loss?     

The Serenity Prayer tells us to accept the things we cannot change. That was good, if painful, advice that helped me and my family during the worst of our times. But even as we accept change, there are steps sudden caregivers can take to begin to manage it, cope with it, and regain some semblance of control. Here are some ideas:

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Go into training

Sudden caregiving confronts caregivers with so many novel challenges it often engenders helplessness. Caregivers flounder, sometimes struggling to give up their old routines, sometimes unsure of which new routines are the “right” ones to provide the best help. While many learn on the job, muddling through caregiving tasks uncertainly, others try to empower themselves by going into caregiver training.

For example, they visit websites, such as the American Heart Association, American Stroke Association, and American Cancer Society, to teach themselves about their care recipients’ conditions and download instructional videos from AARP on such caregiving techniques as operating specialized medical equipment and helping loved ones who cannot safely use the stairs.

They read caregiver self-help books and attend caregiver support groups to glean insights from others’ experiences. By speeding up the learning process, they don’t stay helpless for long but instead rapidly gain caregiving mastery.

Video: How Family Caregivers Can Avoid Financial Stress

Get answers quickly

When my father was sick in the 1970s, we knew no one who was a caregiver to provide direction to us. In that information void, every caregiving question that arose led to bitter arguments between my mother and grandparents.

Today, 50 years later, not only are there many more caregivers in our aging society to share their hard-earned wisdom, but there are many opportunities for tapping into guidance at no cost.

For instance, the Caregiver Action Network’s Caregiver Help Desk and AARP’s Family Caregiving Resource Line have caregiver experts available by phone during weekday business hours to offer resources and a willing ear to listen. Anyone who has ever joined one of the many Facebook caregiver groups knows that posting a question typically elicits dozens of answers within a day from fellow group members about what has worked for them.

Prepare as you can

Once shattered by sudden caregiving, family life may never again feel as safe and predictable as it did. But as the cliche goes, by planning for the worst and hoping for the best, family caregivers can prepare themselves sensibly for what they cannot completely control.

Planning should address such pragmatics as: Who do we call in another medical emergency? Does each family member have a living will documenting their wishes? Who will take care of the dog if we must rush to the hospital?

The answers must always be provisional. Life happens. Tragedies do recur. As sudden caregivers become seasoned, though, they are better equipped to manage frightening, precipitous change as best they can.

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