Intro to the Phenomenon
According to the National Family Caregivers Association, more than 50 million Americans provide care for a chronically ill, disabled, or aged family member or friend during any given year, and that number is growing. Adult children are often first in line to care for their aging parents. But what if those adult children are still raising children of their own? This is the burgeoning challenge faced by an entire “Sandwich Generation” of family caregivers.
When added to the many responsibilities of their own daily lives, including work and raising their own family, caring for a loved one with declining health can be quite an undertaking. In addition to the physical and financial strain of “being everywhere at once,” Sandwich Generation caregivers bear a complicated emotional burden. The worry, pain, and sorrow they already feel over a parent’s illness are compounded by the demanding challenges of caregiving. Feelings of powerlessness and guilt are prevalent in family caregivers — for repeatedly having to “choose” one family need over another, for feeling that no choice can ever be the “right” one, and even for feeling they have no choice at all.
The challenges are real and daunting, and more families are facing them every day.
Does Mom Like You Best?
Family care expectations are more emotional than pragmatic. Whether they’re discussed or not, studies have shown that most families develop distinct care expectations, usually falling on one adult child, and most often a daughter. Those expectations are rooted in emotional connections and perceived shared values more than availability. “Mom’s not thinking of things like: ‘Is my daughter married? Does she have children? Does she have problems that might prevent her being a good caregiver? Does she have the resources to be a good caregiver?’” said Karl Pillemer, a gerontologist at Cornell University, explaining the results of one such study to The New York Times. “Being married or being a parent didn’t matter at all. Being employed only mattered a little.”
The Challenges of Caring for an Aging Parent
Emotional/Mental, Physical, and Financial Strains
It’s not easy to become a parent to a parent. Without the proper resources, this delicate role reversal can strain both ends of a relationship, especially when it’s combined with the stress, anxiety, and pain of an illness. Family caregivers commonly report that it’s most difficult to make time for themselves, manage emotional and physical stress, and balance work and family responsibilities. Many are at risk of becoming patients themselves, primarily due to these unmet needs. As care demands progressively increase, greater health effects are measured on caregivers. On average, family caregivers to persons age 50 or over report more than $5,500 in out-of-pocket spending annually. The cost in time is even greater. AARP conservatively values the unpaid hours of family caregivers at $375 billion annually.
More than $1,000 for every man, woman and child in the United States
And 37% of caregivers report that they had to reduce their work hours or quit their jobs completely to handle their care responsibilities.
“Time is the most expensive commodity I provide, but it has no price tag.” – Diary Excerpt, Evercare Study of Family Caregivers
The Importance of Obtaining Support in Caring for Aging Parents
Despite the growing commonality of caring for aging relatives, it all too often remains a solitary endeavor for family caregivers, many of whom provide most or all of their care alone. Family caregivers tend to focus on their loved one at the expense of their own well-being, and they are often reluctant to share duties or ask for help. Feelings of guilt and responsibility can make it very difficult to request assistance, or even to accept it when it’s offered.
Family caregivers endure increased risks of depression and illness, especially if they don’t receive enough support. It is important for caregivers to realize that being exhausted, stressed, or “burned out” will diminish the quality of care they can provide.
The old axiom rings especially true for the Sandwich Generation: in order to care for others, you have to care for yourself.
Warning Signs of Caregiver Stress:
Resources/tips for Caring for an Aging Family Member
One of the best support strategies for caregivers is to make sure they are aware of and understand the resources that are available to them. The thought of engaging outside respite services makes many family caregivers uncomfortable, but the benefits can be twofold:
Caregivers get the assistance they desperately need.
They also learn how to provide better care for their loved one.
Respite care provides short-term, temporary relief from caregiving responsibilities. Many times, a little bit of help goes a long way, whether it’s the freedom to run a few errands, pick the kids up from school, or simply take a much-needed break. Respite care gives family caregivers some time for themselves and for other personal and family matters, and it’s available for both recurring and on-demand needs.
Assistance from an RN/LPN/CNA
When care demands exceed the medical capabilities of a family caregiver, professional nursing assistance becomes a necessity, both for the patient’s wellbeing and for the family’s peace of mind.
- Certified Nursing Assistants (CNAs) provide personal care services and assist with daily living activities.
- Registered Nurses (RNs) and Licensed Practical Nurses (LPNs) supervise CNAs and are further qualified to administer medications and perform advanced medical procedures.
Bringing professional care into the home can allow patients to remain in their most comfortable and familiar surroundings without sacrificing safety or disrupting the care plans prescribed by doctors. Nurses are also wonderful sources of information for both caregivers and patients, helping both to better understand and care for their specific needs.
Pediatric, Newborn, and Disabled Care
Family care needs aren’t always age dependent. Something as common as a broken bone or the arrival of a new baby can complicate life in a hurry. If a child already has special needs, caring for an aging parent can be even more difficult to manage. Families now have a wide range of care options to respond to both expected and unexpected needs at any age, whether the condition is temporary or chronic.
Always remember: You are not alone! Countless families face the very same circumstances, and care options are expanding to meet these growing needs.
Read tips from BrightStar Care Chief Clinical Quality Officer Sharon Roth Maguire, MS, RN, GNP-BC for how to start a compassionate and productive home care conversation with your loved one.
Ten Tips for Family Caregivers from the National Family Caregivers Association
- Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
- Remember to be good to yourself. Love, honor, and value yourself. You’re doing a very hard job, and you deserve some quality time, just for you.
- Watch out for signs of depression, and don’t delay in getting professional help when you need it.
- When people offer to help, accept the offer and suggest specific things that they can do.
- Educate yourself about your loved one’s condition. Information is empowering.
- There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
- Trust your instincts. Most of the time they’ll lead you in the right direction.
- Grieve for your losses, and then allow yourself to dream new dreams.
- Stand up for your rights as a caregiver and a citizen.
- Seek support from other caregivers. There is great strength in knowing you are not alone.
Some Family Caregiving Resources
Family Caregiver Alliance
Founded in 1977, Family Caregiver Alliance (FCA) was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Long recognized as a pioneer in health services, FCA now offers programs at national, state and local levels to support and sustain caregivers.
The National Alliance for Caregiving
Established in 1996, The National Alliance for Caregiving (NAC) is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
The Caregiver Action Network (formerly the National Family Caregivers Association)
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
The National Council on Aging
The National Council on Aging (NCOA) is a nonprofit service and advocacy organization. It brings together nonprofit organizations, businesses, and government to develop creative solutions that improve the lives of all older adults.
AARP Caregiving Resource Center
The AARP Caregiving Resource Center offers expert advice, assisted living options, and resources for caregivers and senior care needs.