Exhaustion,
both emotional and physical, can put a caregiver in the danger zone
AARP, Updated October 1, 2019
En español | Taking care of an aging or
ill family member can be enormously rewarding but also exhausting and
emotionally draining.
Two in 5 family caregivers rate their job as
emotionally stressful, and 1 in 5 reports a high level of physical strain,
according to the latest Caregiving in the U.S. report from AARP Public Policy Institute and
the National Alliance for Caregiving.
Plowing through might feel doable in the short
term, but too much time without a break can lead to caregiver burnout, depression and health
problems. Every caregiver needs a caregiver — someone who will tend to your
loved one for a few hours, days or weeks so you can take care of yourself.
Respite care helps you make it through the
long haul, and that’s good for both you and your loved one. Respite can come
from family and friends but also from volunteer groups; faith-based
organizations; local, state and federal agencies; or paid respite workers. It
can take place in the home or at an outside facility such as an adult day care
center.
Some long-term care insurance plans cover part
of the cost of respite care.
Design a family
respite care plan
The first step in developing a family plan is
thinking through your needs and who’s available to help fill them.
• What do you need? Three hours off, twice a week? Twenty-four
hours away from the house? A regular day (or night) out with your spouse or
friends? A combination of the above?
• What does your loved
one need? Meals? Laundry? Light
housekeeping? Personal care? Daily walks? Medical help? List every job, large
and small.
• Who can pinch-hit? Cast a wide net. List family near and far,
your friends and your loved one’s friends.
Call a family
meeting
Include out-of-town siblings, adult children
and extended family via video chat. Explain that you need regular and as-needed
time away from caring for the loved one you share.
A few elements are key to a successful family caregiving meeting.
• Be specific. Don’t expect your family to automatically
know your needs.
Tell them about what you and the care
recipient require. Will they need to make meals? Administer prescriptions?
Simply offer comfort and conversation?
• Be flexible. Offer options — that makes it easier for
family to pitch in.
If family members beg off because work and
kids eat up weekdays, ask if they can cover Friday nights or an early morning
run to adult day care.
A sibling who can’t contribute time may be
able to contribute money to cover a car service or a once-a-week professional
caregiver. Your out-of-town sister and her family can come to stay for a week
while you take a vacation.
• Answer questions. Many people expect caregiving to be
overwhelming, or they fear making a mistake. Ask about concerns and
address them as best you can.
For example, if anyone is uneasy about
bathing, dressing or helping a loved one go to the bathroom, consider arranging
to have a home health worker come during their respite shift.
If the person receiving the care has mobility
issues, demonstrate how to assist. Let your substitutes know you’ll leave
written instructions about meals and medicine, and phone numbers for backup
care providers and your loved one’s medical team.
• Consider using a free online scheduler such as Lotsa Helping Hands or CareCalendar
that lets you specify what you need and allows others to sign up to provide
services and get updates on how your loved one is doing. Email the link and
login to your family and friends and to your loved one’s friends and neighbors.
Longtime friends and neighbors often are glad
to spend a few hours a month helping someone with whom they share a history.
Finding outside
respite care
Numerous local and national organizations
offer information and contacts for paid and volunteer respite-care services. In
some cases, federal agencies such as the Department of Veterans Affairs and
Medicare offer help covering the cost.
A good place to start your search is the National
Association of Area Agencies on Aging. You’ll find contacts for
local agencies that can connect you with visiting companions, hourly in-home
respite care, adult day care and overnight respite providers.
The association also can tell you about no- or
low-cost respite programs in your area and whether financial assistance is
available from government programs or other sources.
Several government and nonprofit agencies
offer free respite help, among them:
- Faith-based caregiving
organizations, including local branches of Faith
in Action or Interfaith Caregivers.
Many have programs that will set up regular two- or three-hour social
visits with your loved one, giving you time to spend on yourself.
- Elder Helpers, a nonprofit online service that prescreens and posts
pictures and bios of local volunteers who want to visit older people and
help them by doing basic chores. The visits or services come at no charge.
- Senior Corps, a branch of the federal Corporation for National
& Community Service. Its Senior Companions program
matches volunteers older than 55 with seniors living independently to
provide companionship, help with daily tasks and a break for family
caregivers.
Another option is adult day care. There are
more than 4,000 such programs in the United States, offering supervised
activities, social interaction, meals and limited health services. Most centers
are open five days a week and some have evening and weekend activities.
Costs for adult day care can range from $25 to
more than $100 a day, according to the federal Administration for Community Living.
Rates and regulations vary depending on where you live, the type of services
offered and whether you’re eligible for government financial assistance (for
example, through Medicaid, the Veterans Health Administration or the Older Americans Act).
You’ll find more information in the Caregiver
Resource Center article on adult day care options.
A number of groups are trying to help combat
caregiver burnout through respite care:
• The Alzheimer’s Association offers information and advice on respite care
when you’re caring for a patient with progressive memory loss.
• The ARCH National Respite Network and Resource Center has a respite locator that links you to respite
providers and other resources in your state.
• The Department of Veterans Affairs
provides up to 30 days
of respite care a year for people caring for former service members. Click on
the tabs Am I Eligible? and What Services Can I Get? for details.
• The National Adult Day Services
Association has consumer
information on adult day care services and a tool to find centers in your area.
• Respite coalitions in many
states bring together public and private organizations to advocate for and
coordinate respite programs for family caregivers.
Editor's note: This article, originally
created in 2017, has been updated with 2019 information.
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