The shift to becoming a caregiver came slowly but surely for Maureen Spring and her family.
From the moment her father began showing signs of Alzheimer’s and dementia nearly a decade ago, Maureen Spring knew what was coming. She’d watched something similar happen already with her father-in-law. She understood how the road ahead might look, not that it made it any easier. Within a few short years of her father’s diagnosis, Spring’s parents had relocated to an assisted living facility north of Boston, about 40 miles from their home in Central Massachusetts. The new location is close to one of Spring’s brothers, but 120 miles or so from her home outside Hartford, Connecticut. Still, the new living arrangements meant her father could get the care he needed and her mother could live comfortably in the same facility. His disease soon progressed to the point where her father now has to live within a locked unit on the premises.
Now, primary caregiving falls mostly on her aging mother who is his full-time advocate and companion. It also trickles down to Spring and her four brothers who, between the five of them, spend most weekends relieving their mother and sharing caregiving responsibilities for their father.
“You never know what life’s going to throw at you,” Spring said, recounting both her father’s decline and the accompanying tolls on time and money it’s meant for her family. Caregiving has meant significant time away from her husband and adult children. It’s meant rearranged work schedules. It’s meant long hours traveling to and from the nursing home. The whole family endures significant added stress and responsibility.
It’s tough, Spring said, but worth it. Taking care of her parents is something she wants to do.
Caregiving challenges any family precisely because it impacts so many aspects of caregivers’ lives. It’s hard, emotionally difficult work that can have lasting consequences on caregivers’ physical and mental health. It poses significant obstacles for the workplace and the health care system.
These are everyday issues for Spring, her family, and 43.5 million other family caregivers in the United States who regularly provide care for their parents, spouses or children.
Who are these caregivers? The typical caregiver is a 49-year-old woman caring for a parent or parent in law. But trying to personify those caregiving statistics clouds the picture more than it clarifies. Forty percent of caregivers are male, for instance. And nearly one in 10 caregivers is 75 or older. The profile varies considerably.
The range of conditions caregivers treat also varies widely, according “Caregiving in the U.S.: 2015, a study by the National Alliance for Caregiving and AARP.” Three in five care recipients (59 percent) have a long-term physical condition. More than a third (35 percent) has a short-term physical condition. A quarter (26 percent) has a memory problem. That said, some conditions are more common. Along with “old age” and surgery or wound care, Alzheimer’s is one of the three most frequently named conditions caregivers assist their loved ones with. While 8 percent of caregivers identify Alzheimer’s or dementia as the main condition they care for, 22 percent of caregivers said it affects their loved ones.
More than 28 million baby boomers will develop Alzheimer’s disease between now and 2050, according to the Alzheimer’s Association. And the aging of that population will shift the trend toward more severe forms of the disease.
Caregivers face similar difficulties in balancing their roles as caregivers regardless of whether they care for a grown parent with Alzheimer’s, a young child with a developmental disability, or a spouse with cancer. With the growing need for informal care, more individuals and their families will be grappling with many of the following unique financial and personal challenges.
Sharing the work: the family dynamics of caregiving According to the Caregiving in the U.S. study, about half of caregivers get help from family members or friends, but one in three report they get no help at all from anyone else.
“Many families are able to manage on their own. And most family members and friends who willingly undertake caregiving find it an enriching experience and a source of deep satisfaction and meaning. But others who take on the caregiving role experience daily struggles, worries and frustrations. They have no idea what to do, how to do it, or where to get reliable and affordable help,” notes Lynn Friss Feinberg, a senior strategic policy adviser for the AARP Public Policy Institute. “Family caregiving can be especially overwhelming, stressful and costly when it involves caring for someone with dementia over many years.”
Are you a caregiver? Remember to take care of yourself. Denise Brown, who runs the highly successful Caregiving.com website, offers advice on how caregivers can give their best to their loved one by taking care of themselves. “When we care for a family member, our energy, unfortunately, turns to loss. Our family member who now needs our help and care loses their independence, their abilities, their friends, their good health. We do our best to compensate for what they lose. With so much of our thoughts and actions about their loss, we can overlook our own losses — we lose friends, career opportunities, time to socialize, a chance to do what we once loved doing. And, before we know it, we can feel lost to caregiving.” Read more of Brown’s advice here.
Balancing work and caregiving. Caregiving is a part of life for millions of American workers: About 60 percent of the 43.5 million family caregivers in the U.S. also hold full- or part-time jobs. That translates to roughly one in five workers, a significant percentage of the nation’s workforce. The majority of those employed family caregivers work nearly 35 hours a week, and then spend a sizable chunk of their off-hours providing unpaid care to their parent or other family member. In fact, caregivers typically provide 24 hours per week of care, leaving little time for themselves. Yet many say they cherish their ability to be caregivers. Fortunately, employers are making strides to help the increasing number of workers with caregiving responsibilities. Read more here.