Caught in the Middle

Balancing caregiving between generations

Chances are you know someone who consistently provides care for a family member. Perhaps that’s you? Either way, you are not alone.

If you’re a caregiver, it’s also very possible you are a member of the sandwich generation — people who balance their time between caring for a spouse or child as well as for a parent.

Statistics tell the tale. The United States Census Bureau projects that the number of adults aged 65 and older will surpass the population of children by 2034 — less than a decade from now. In its 12th Annual Workplace Benefits Study in 2023, Guardian Mutual Insurance Company reports that 53 million U.S. adults care for a spouse, parent or relative, or a child with a disability. That’s up from 43.5 million in 2015.

As people live longer and the population ages, the number of adults in the sandwich generation has also risen significantly. A Pew Research Center study in late 2021 found that adults in their 40s and 50s are most likely to have a child younger than 18 still living at home, as well as a parent aged 65 or older.

“Being a caregiver may present challenges in adapting or finding resources,” said Greg Link, director of supportive and caregiver services with the U.S. Administration on Aging. “When you are both caring for an older adult family member with medical or health issues and a child, the dynamic shifts, and often the caregiving responsibility falls to one family member, often women.”

Every situation is different just as every family is different, but having open and candid discussions, particularly long before they are necessary, will help manage expectations, help define responsibilities within the family, and give maximum consideration to the person who needs the care.

A family-focused approach can be effective when having internal conversations and with medical team members. Link said this might not always be possible, but the earlier such conversations begin, it is likely the outcomes can be better for all people involved.

The biggest challenge is lack of preparedness when a family seems to be caught unaware, most often when one family member may notice a decline in the parent but is hesitant to bring it into the open.

Link said that it’s important for each family member to realize that the process will take compromise and negotiation to have a truly workable situation. Those solutions will vary, particularly with the need to care for a parent or older family member.

“For instance, a possible division of shared responsibilities in caring for a parent would be for one sibling to take the lead in the health care and medical considerations and another to be the main contact for financial issues,” he said. “Of course, just because one or two family members agree to step up, the rest of the family can certainly stay involved.”

The primary caregiver may need a designated backup who can occasionally take the loved one to an appointment or help with housekeeping if the loved one is receiving care at home. Relieving the caregiver for several hours or an overnight stay can allow them personal time with their own family and a chance to attend to their own health and energy.

Regular check-ins with the caregiver — and of course with the loved one — through visits and phone calls can help relieve a caregiver’s feelings of isolation or loneliness, as well as the handling of the day-to-day challenges of ongoing care.

WHO CARES FOR THE CAREGIVER?

According to the Centers for Disease Control and Prevention, on average, family caregivers spend more than 57 hours each week caring for someone who is disabled or living with limitations. That’s more than eight hours a day, all on top of work and other responsibilities; it’s easy to see why many caregivers can feel overwhelmed.

“Caregivers often forget about themselves and their own needs, especially if they don’t have a supportive and engaged network — including family — who check in with the caregiver regularly and can be available to help,” Link said. “More often than not, when the caregiver is doing a good job, people don’t volunteer to help.”

“In reality, it’s usually up to the caregiver to ask for help and support to be able to maintain their own balance between caregiving duties, work, and life demands. And this can be difficult,” Link continued. “Just by the nature of a caregiver personality, sometimes it’s just easier to stay steadfast and handle everything, but this can lead to burnout, exhaustion, or worse.”

Link encourages family members to help each other. He said to be specific and start with a simple task, such as preparing a meal. Ask other family members to help with meal preparation once a week. It gives the caregiver a break from the kitchen and it provides an opportunity for other family members to visit with their loved one and the caregiver while being involved in helping. It will also encourage conversation and quality time.

“The important thing for caregivers is knowing when to ask for help, and to be specific. As the caregiver, identify a need for yourself,” Link said. “As the caregiver, do you need some regular time each week to attend to personal matters? Or perhaps having a weekend away to refresh and recharge? It’s much easier to enlist help when the need is specific.”

FINDING REPRIEVE

Caregiver respite is a temporary break from caring for a family member, friend, or loved one, and it takes on many forms. It could be taking a break for a few hours, a few days, or several weeks, bringing in a professional or trained aid to assist with care, asking a family member to do a load of laundry while the caregiver goes outside for a walk; the options for how to spend this time are diverse.

The National Respite Network (archrespite.org) can connect caregivers to organizations in every state that provide access to respite services. This may include temporarily hiring and paying for a professional caregiver or finding home-care options. It offers specific steps to identifying the type of respite that is best for the primary caregiver.

A number of local, regional, and national organizations offer information and support for caregivers as well as provide help for the person being cared for. Area Agencies on Aging, local departments of human or social services, area Easterseals organizations, and the Centers for Disease Control and Prevention are ideal places to start.

SOURCES FOR SUPPORT AND ASSISTANCE

The Eldercare Locator (eldercare.acl.gov) is one of the best websites to visit to learn about resources for older adults and their family caregivers. A public service of the Administration for Community Living, it connects people by ZIP code search to aging and disability resource centers, state units on aging, and local Area Agencies on Aging.

“The Eldercare Locator is comprehensive, and it provides broad-based resources to assist caregivers, family members, and care receivers,” Link said. Funded by the U.S. Administration on Aging, part of the Administration for Community Living, it maintains a current database of eldercare facilities and resources across the country that provides information for older adults and caregivers. Website links assist with information about long-term care planning, options for long-term care, and contact information for home- and community-based services available through the Older Americans Act.

Information is available to help older adults and their caregivers evaluate mobility needs, identify transportation options in their area, and create a customized plan for the care receiver. Resources are also available for long-distance caregivers, making transitions from hospitals back to home, housing options for older adults, and home modifications that can allow older adults to continue to live safely in their own homes.

“The information goes into a number of issues, from how to prevent falls at home to ways to avoid financial scams,” Link said.

The website offers an educational guide to benefits for older adults, updated in 2022, to connect eligible people with public and private programs that can assist in paying for health care, prescriptions, food, and utilities.

“Don’t overlook groups like the Alzheimer’s Association, the Parkinson’s Foundation, various organizations that provide information about cancer, the American Heart Association, the American Lung Association, and similar groups that provide resources and support for patients and caregivers,” Link said.

“The reality is that caregiving will touch many of us in some way, and it is best to be prepared, do some initial research about the availability of resources, and talk — at least in general terms — about how your family can be ready to provide the utmost care and support for your loved ones.”

Pamela A. Keene writes lifestyle, gardening, travel, health care, and consumer articles. She is an avid gardener, has visited seven continents, and is an award-winning photographer.

SIGNS OF CAREGIVER BURNOUT

1. Fatigue, loss of energy
2. Difficulty with sleep, either sleeping too much or not enough
3. Excessive worry
4. Feeling sad or isolated
5. Losing interest in formerly enjoyable activities
6. Missing personal medical appointments
7. Gaining or losing weight
8. Skipping meals or neglecting personal self care
9. Being quick to anger
10. Having frequent headaches, other pain, or health problems

MANAGING CAREGIVER STRESS

Mayo Clinic offers tips for managing caregiver stress:

1. Ask for and accept help
2. Set goals and divide them into manageable tasks
3. Move more, eat healthy, and drink plenty of water
4. Join a support group
5. Stay connected to family and friends
6. Connect with community resources for meal delivery or house cleaning
7. Focus on the positives and remember that you’re doing the best you can

Cleveland Clinic summarizes common signs of caregiver stress and burnout on its website: my.clevelandclinic.org/health/diseases/9225-caregiver-burnout

LEGAL CHECKLIST FOR CAREGIVERS

According to the American Bar Association, attorneys are often asked for advice about adults who are becoming helpers or caregivers for a family member. The Commission on Law and Aging of the American Bar Association has developed a checklist as preliminary advice for caregivers and their loved ones as they begin this often complex legal and personal relationship.

1. Understand the person’s capability for making decisions related to their care. Seek help to evaluate and support people with compromised capacity.
2. Know what legal authority you have, which can be through powers of attorney for financial and/or health care; by default through surrogate laws for health decisions, which vary from state to state; and guardianship or conservatorship proceedings through local courts.
3. Appoint a health care agent — someone to make health care decisions when you are unable to make them for yourself. This can also include guidelines about how decisions should be made, and a talk with trusted loved ones or advisors about what your life priorities are and your goals for the care you want.
4. Complete a financial power of attorney. Do not rely on joint bank accounts to protect all parties. Consult with an attorney to create documents applicable to your specific situation.
5. Manage Social Security/veterans benefits. Managing someone else’s Social Security benefits requires being appointed as a representative payee; powers of attorney are not recognized by the SSA. The Department of Veterans Affairs has a similar procedure.
6. Know your rights of access to health information. Health care providers cannot disclose a patient’s personal health information without consent except in limited circumstances. While the patient still has capacity, they can give you rights to access such information. This can be done by naming you or the caregiver as their health care power of attorney. Otherwise, health care providers have broad discretion under the law to determine what is in the patient’s best interest.
7. Be aware of the signs of abuse, neglect, and exploitation. As a caregiver, you’re the front line of protection against abuse and neglect as well as financial exploitation. Know what action to take when you see red flags.
8. Know your rights if you face family responsibilities discrimination. Working while also caregiving creates enormous demands on caregivers. Being criticized, downgraded, or fired because of the need to take periodic or unplanned time off to care for a loved one may constitute family responsibilities discrimination. While most states do not prohibit family responsibilities discrimination, legal protections based on other laws may.
9. Understand your rights under the Family and Medical Leave Act, which entitles someone up to 12 weeks of unpaid job-protected leave per year to care for a parent, spouse, or child. However, it only applies to employers with more than 50 employees. Some employers voluntarily provide paid family and medical leave; for specifics, check your employee benefits.
10. Consider personal care agreements. Caregiving may require a financial sacrifice, particularly if a caregiver must cut back or give up work because of caregiving responsibilities. A loved one who receives care from a family member may wish to provide compensation to that caregiver. However, it can create problems with health benefits such as Medicaid, can bring up tax questions, and may create family conflict. Use a formal personal care agreement to spell out terms and expectations.

This article was prepared by the American Bar Association, Commission on Law and Aging, americanbar.org/law_aging. It is intended solely to highlight issues that may arise and is not intended to be and should not be considered as legal advice. For your individual situation, you should consult with a qualified attorney.