Americans provide 37 billion hours* of informal (unpaid) care each year for spouses, parents, siblings, and even sometimes friends with chronic health conditions that prevent them from performing the usual activities of daily living (ADLs) without assistance, endangering their independence. Family caregivers step in to help their loved ones continue to age in place in the comfort of their own homes and communities.
What does caregiving look like?
Caregiving is a role that can develop via small steps over time or occur in an instant, and can last from less than a year to several decades. Specific caregiving tasks are influenced by a wide variety of factors such as:
- The care receiver’s physical and medical needs
- Their emotional, psychological, and spiritual needs
- Their cognitive impairment or limitations
- The caregiver’s health and limitations
Caregiving tasks can range from transportation to and from appointments, grocery shopping, food preparation, and light housework to bathing, changing briefs or other incontinence products, dressing, feeding, and administering medications. Caring for someone with Alzheimer’s or a related dementia can be even more involved.
Who are caregivers?
Most of us will be caregivers at some point in our lives, but the average caregiver is between 35 and 64 years old, with outliers on both ends. Of those aged 50-64, about 60% are still working full- or part-time. Most caregivers for people aged 65 and over are older adults themselves.
More often than not, family caregivers enter this new role with little to no preparation, and doing so can quickly result in overwhelm. Fortunately, there is an abundance of available resources that include:
- State, federal, and nonprofit agencies
- Free online videos and caregiver forums
- Books, courses, and workshops
- Online and in-person peer support groups
- Community-based services such as adult day programs and respite volunteers
- In-home direct care workers (depending on your location)
- Geriatric care managers who, though far from free, can lighten the caregiving burden
Attempting to go it alone and “wing it” usually ends up causing more stress and strain, leading to many a caregiver’s decision to place a loved one in a long-term care facility.
Ironically, increasing life spans and shorter hospital stays, as well as advancing technology and new medications, have placed heavier burdens on family caregivers for longer periods of time. The physical and emotional demands of long-term caregiving can result in major health impacts, and older adults spend more hours per week providing care than younger ones.
Caregivers, particularly female ones, appear to experience more emotional stress, and are at higher risk for anger, anxiety, depression, exhaustion, reduced immune response, neglect of their own self-care, and higher mortality rates than non-caregivers. Older caregivers are especially vulnerable to both social isolation and task-related physical injuries.
Long-term caregiving also has financial consequences for caregivers. They face lost income if they reduce their work hours or have to leave their jobs, loss of employer-based medical benefits, shrinkage of savings to pay caregiving costs, and a threat to retirement income due to fewer contributions to pensions and other retirement plans.
Fortunately, more employers are recognizing the need to accommodate and provide resources for caregiving employees, and new legislation for caregiver benefits and support, including the Credit for Caring Act and the Essential Caregivers Act of 2021, is moving forward.
It’s important to prepare for the inevitable legal fallout should you or your loved one become physically or cognitively unable to carry out tasks that have legal implications, such as:
- Monitoring and accessing accounts
- Paying household bills
- Signing and filing documents
- Making healthcare, long-term care, and end-of-life decisions
A local attorney, or even an online service such as legalzoom.com or rocketlawyer.com, can help you with legal tools like durable (financial) power of attorney (DPA) and durable power of attorney for healthcare (DPAHC), so that you and your loved one can empower someone you trust to make decisions should it become necessary.
Planning, and the Importance of Self-Care
Whether it’s you or a loved one who requires care, the best thing you can do is to plan ahead. Here are some tips:
- Learn all you can about your or your loved one’s diagnosis and prognosis.
- Discuss and make decisions about finances and healthcare wishes.
- Take advantage of government and community resources.
- Build a strong, sustainable support system that goes beyond friends and family.
*Source: “Caregiving”. Family Caregiver Alliance. Margalo Eden owns Eden Aging Care Consulting in St. Augustine, Florida. By Margalo Eden