Are you becoming a family caregiver?
Family members are the primary providers of elder care in this country. About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months, according to a recent study by AARP and the National Alliance for Caregiving. Unpaid caregivers provide 85% of long-term care.
The transition of spouse or child to family caregiver can happen all of a sudden or gradually, and it can be short- or long-term. You might notice behaviors from time to time that signify an older family member may need longer-term assistance, such as:
• Forgetfulness and confusion.
• Unexplained weight loss.
• Changes in housekeeping habits.
• Loss of interest in favorite activities and increased isolation.
• Poor personal hygiene.
• Dramatic mood swings.
• Problems with balance and mobility.
• Damaged belongings, such as dented car fenders and broken eyeglasses.
Or you can find yourself suddenly providing care. Your normally active and healthy spouse suffers a heart attack or breaks a hip. A neighbor calls to let you know that Mom is wandering the neighborhood looking confused.
And, just like that, you become a family caregiver.
Though it can start with a few activities, such as driving elders to doctor appointments or helping with grocery shopping, it can quickly become overwhelming. Many caregivers work and also provide care, juggling competing responsibilities.
Research indicates caregiving takes a significant emotional, physical and financial toll. For example, home health aides are not covered by Medicare or private insurance (unless it's a good long-term care policy), so that's an out-of-pocket expense.
To bring awareness to these issues, the nonprofit Caregiver Action Network (CAN) has set November as National Family Caregivers Month. CAN's website (www.caregiveraction.org) offers extensive information, advice and resources for those with caregiving responsibilities. Research has shown that caregivers who use support networks, whether online or in the community, are less likely to experience burnout.
The transition to family caregiving doesn't have to be haphazard. If you were to hire a private patient advocate or elder care manager, they would:
• Gather and coordinate information from health care providers.
• Assess your care recipient and the home environment.
• Research available public and/or private services and resources.
• Communicate among all parties so everyone is on the same page.
You can learn to think like a patient advocate or care manager by taking a clear-eyed look at the circumstances you and your care recipient are dealing with.
Begin by assessing the elder's ability to function independently, from both a practical and cognitive point of view. What is the status of their health, and how complex is their care? Can they continue to live in their home as it is? If it needs modifications for accessibility, how much will that cost?
Start establishing a network of other sources of care. Are there additional family members who can pitch in, or willing neighbors? Are there community resources, such as adult day services? Begin researching the quality, cost and availability of home health care agencies in your area for those times you need backup.
Ascertain whether the care recipient has important legal documents, such as an advanced medical care directive and durable powers of attorney for health care and finances. If you're going to be the primary care provider, you will want to be sure you are able to make decisions on their behalf if they can no longer do it.
Finally, assess your own capabilities and resources. How is your health? How demanding are your job and other family responsibilities? Do you have the financial wherewithal to provide what the recipient needs? A 2021 AARP study found that 78% of family caregivers regularly incur out-of-pocket costs caring for a loved one, with the average annual expenditure topping $7,200.
When you have answered all of those questions, you can formulate a plan that will tackle the most important concerns first and help you provide care and reassurance for an aging loved one.
My last bit of advice is to not wait until there's a crisis. Home Instead (www.homeinstead.com) recommends the 40/70 rule. The idea is this: If you're a child about 40 years of age and your parent is 70, it's time to start having early conversations about possible future needs, desires and outcomes. Their website provides a helpful tool kit for jump starting these sometimes-difficult discussions.
Being a family caregiver isn't easy. Ask for help, and acquaint yourself with all the resources that are out there.
• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). She is offering a free, 30-minute phone consultation by calling (312) 788-2640 to make an appointment.