Most people, at some point in their lives, are caregivers.
Many help older, sick or disabled family members and friends every day.
Some caregivers are paid professionals, but most caregivers are unpaid helpers for relatives, friends and neighbors.
According to a 2011 report by the AARP Public Policy Institute , "Valuing the Invaluable," approximately 42.1 million Americans provided an average of 18 hours of unpaid care per week for adult family members and friends with chronic illnesses or conditions. This informal care includes helping others handle daily activities such as bathing, managing medications or preparing meals on their own. Family caregivers, particularly women, provide over 75% of caregiving support in the United States.
Small tasks add up
Family caregivers manage a wide range of responsibilities. These include:
- Buying groceries, cooking, cleaning house or doing laundry for someone who needs special help doing these things
- Helping a family member get dressed, take a shower or take medicine
- Transferring someone in and out of bed, helping with physical therapy, injections, feeding tubes or other medical procedures
- Making medical appointments and driving to the doctor and drugstore
- Talking with the doctors, care managers and others to understand what needs to be done
- Spending time at work handling a crisis or making plans to help a family member who is sick
- Serving as the designated "on-call" family member for problems
In small doses, these jobs are manageable. But juggling competing caregiving demands with the demands of one’s own life on an ongoing basis can be quite a challenge.
With the 65+ age group expected to double to 70 million people by 2030, family caregivers increasingly provide care for aging parents, siblings and friends, many with one or more chronic conditions who wish to remain in their own homes and communities as they age. Others belong to the "sandwich generation," caring for children and parents at the same time.
Caregiving roles and demands are impacted by a number of other factors, including:
- Type of illness. Caring for someone with Alzheimer’s disease, other dementias, or other brain-impairing disorders can be more stressful than caring for someone with a physical impairment. Caring for someone with a cognitive disorder can be a 24/7 job due to the unpredictability of the care recipient’s behavior.
- Long-distance caregiving. Long-distance caregiving is usually defined as care provided by a caregiver living more than an hour away from the care recipient. Caring from a distance is difficult both emotionally and logistically, and is most common in situations where adult children and their parents do not live in the same area. In these cases, the caregiver’s role is not as much "hands-on" as it is gathering information about available resources, coordinating services and putting together a "team" of family, friends and paid help that can meet the care recipient’s needs.
- Urban versus rural settings. Caregivers living in rural settings face unique challenges. These include fewer available formal services, fewer physicians and health education services, transportation difficulties, weather problems in winter, geographic distance and isolation.6
- Different cultural approaches to caregiving. The United States’ great diversity means that families bring their own histories, traditions and rituals to caregiving. In many cultures, there are family expectations about the caregiving roles of adult children; this is especially true in cultures where daughters or daughters-in-law are expected to assume the primary caregiver role for aging parents.
5 Tips for new caregivers
For some, caregiving occurs gradually over time. For others, it can happen overnight. It’s easy to become overwhelmed as a new caregiver. These five steps can help:
- Start with a diagnosis. Learning about a family member’s diagnosis helps caregivers understand the disease process and plan ahead realistically.
- Talk about finances and healthcare wishes. Having these conversations can be difficult, but completing Durable Powers of Attorney for finances and healthcare can help relieve anxiety and better prepare for the future.
- Consider inviting family and close friends to come together and discuss the care needed. If possible, it’s helpful to include the care recipient in this meeting. This meeting gives caregivers a chance to say what they need, plan for care and ask others for assistance.
- Take advantage of community resources such as Meals on Wheels and adult day programs. These resources help relieve the workload and offer a break. Look for caregiver educational programs that will increase knowledge and confidence.
- Find support. The most important thing is for caregivers to not become isolated as they take on more responsibility and as social life moves into the background. Online an in-person groups can be very helpful in connecting with others in the same circumstances.
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