Caregiving is hard work. Nobody wants to be a caregiver; they do it as an act of love. I never heard of a 7 year old who when asked what they wanted to do when they grew up said, “I want to be a caregiver for my parents!” And there are no schools, no adult education classes, nor college courses to teach us to be caregivers. Caregivers (read adult children) may have their lives abruptly and drastically interrupted by a catastrophic health care issue for which neither they nor their parents were prepared. Often caregivers face the inevitable twin emotions of guilt and depression which accompanies such an event. Let’s face it; Americans are in denial regarding aging, so we just don’t deal with it. 49% of 60 year olds in America still have at least one parent alive. The decisions that a child will have to make for the parent at a time when there is much stress, emotions, and unexpected problems, are critical to not only the parent’s life, but the caregiver-child’s too. Remember, it seldom is the person needing the care that suffers the most. They will get the care no matter what, but it is the caregiver who really suffers the most. The idea is to manage the care, not provide it.
The loved one’s physical or mental health decline can either come as a gradual, slow process, or sudden, urgent emergency that must handled immediately. Either way, the caregiver must have a plan for Caregiving. This requires foresight and thought. Make sure their affairs are in order: estate planning, insurance, finances & retirement, legal, take inventory, etc. Determine where they will live. Most people want to stay at home, age in place. Have the caregiver educate themselves on the Caregiving process and what will be needed in their particular case.
The sites below are some resources to help in this monumental planning process. They are specific to the San Jose and surrounding areas, but many are useful no matter where you live. Take advantage of them and support groups.
Locators for Facilities and Services
Senior Centers & Adult Care Centers
Sites that rate institutions and services
Family Caregiver Alliance
This is the oldest and
perhaps most respected organization that's helped serve the needs of
caregivers. They also have a dandy Web site (www.caregiver.org) that offers a
Family Care Navigator map which lists a broad range of caregiving services in
each state.
Council on Aging Silicon
Valley
211 information
Gives 24/7 community,
health, and disaster information, child care, senior services, counseling,
food, shelter, job services, and much more.
Administration on
Aging
The mission of the
Administration on Aging (AoA) is to help elderly individuals maintain their
dignity and independence in their homes and communities through comprehensive,
coordinated, and cost effective systems of long-term care, and livable
communities across the U.S.
California Department of
Aging
The California
Department of Aging (CDA) administers programs that serve older adults, adults
with disabilities, family caregivers, and residents in long-term care
facilities throughout the State. The Department administers funds allocated
under the federal Older Americans
Act, the Older
Californians Act, and through the Medi-Cal program.
Assist Guide Information
Services
This is a fabulous Web
resource for caregivers that you can get information on topics such as home
care, daily living aids, long-term care solutions, support services, legal and
financial help and more. It also lets you ask questions, links you to other
caregivers for support and information, and offers a variety of checklists that
suggest tips on what to do as a caregiver and how to do it.
Caring.com
Relatively new on the scene, www.caring.com is another wonderful site that
offers tons of practical information, articles, caregiving to-do lists, links
to local resources and much more.
The 40/70 Rule
How and when to have “the
talk” with your parents
Family Caregiving 101
Created by the National
Family Caregivers Association and the National Alliance for Caregiving www.familycaregiving101.org or www.nfcacares.org is a
great site for finding assistance, answers, new ideas and helpful advice for
you and the person you’re caring for.
Careminds with CareSite
An
innovative free feature that aids families and friends in managing the care and
support of an elder loved one.
Eldercare Financial Resource Locator Tool, Paying for Senior Care
Assisted Living Federation of America
Retirement Living Information Center
American Association of Homes and Services for the Aging
Caregiving From a Distance
Be sure to check out the links page of this site
AARP
At
www.aarp.org/family/caregiving you can find tips and worksheets and on a wide
range of issues including long-distance caregiving, as well as access to their
Caregiving Tool Kit.
Strength for Caring
Sponsored by Johnson &
Johnson, this site (www.strengthforcaring.com) provides tip sheets on fitness
and nutrition for caregivers, balancing work and family, respite care, reducing
stress, caring for specific conditions and home safety.
International Council on Active Aging
Medicare Help
To help with your
caregiving/Medicare questions the Centers for Medicare & Medicaid Services
recently created a new Web site called Ask Medicare. At
www.medicare.gov/caregivers you can find out what Medicare and Medicaid will
cover, search for and compare home care and long-term care options and much
more.
Alzheimer's Caregiving
Caring for a person with
Alzheimer's disease or some other form of dementia can present some unique and
difficult challenges. To help, a top resource is the Alzheimer's Association
(www.alz.org, or call 800-272-3900). It puts caregivers in touch with local
resources, support groups, medical professionals and provides caregiving tips
to handle every behavior and phase of the disease. Also see the Alzheimer's
Disease Education and Referral Center at www.nia.nih.gov/alzheimers.
Cancer Care
If you're caring for a cancer
patient, a top Web site is www.cancercare.org, which provides cancer support
services including counseling and education, as well as where to find financial
assistance and get practical help. You can also call 800-813-4673 and get help
over the phone.
Lotsa Helping Hands
If you're sharing caregiving
responsibilities with other family members, friends or a home care aid there
are Web resources that can help you coordinate together. Sites like
www.lotsahelpinghands.com and www.caregiverhelper.com let caregivers post
updates about medications being taken, doctor's appointments, meal plans and
anything else you want to communicate. These sites can help reduce the stress and
time it takes to inform all caregivers involved so something isn't missed or
overlapped.
Federal Interagency Forum on Aging
FINRA Investor Education
Foundation 55+
Internet web sites on care
resources and caregiving, for example, www.elderweb.com, www.healthinaging.org/public_education and www.caregiving.org
National Association of Professional Geriatric Care Managers
To report neglect, abuse:
Start with Adult Protective Services for those living in the community, or the ombudsman (advocates) for those in facilities, and follow with a police report. Other organizations that provide oversight and advocacy are:
- Assisted-living facilities: California Department of Social Services, www.dss.cahwnet.gov
- Skilled-nursing facilities: California Department of Public Health, www.cdph.ca.gov
- California Long-Term Care Ombudsman Program hot line: 800-231-4024
- Alameda County Long-Term Care Ombudsman Program: 510-638-6878
- Attorney general's Bureau of Medi-Cal Fraud and Elder Abuse: 800-722-0432
- Your local police department or sheriff's office
Other resources:
- Legal Assistance for Seniors: www.lashicap.org, 510-832-3040
- California Advocates for Nursing Home Reform: www.canhr.org, 415-974-5171
- Foundation Aiding the Elderly: www.4fate.org, 877-481-8558
Age Wave
Age Wave is the nation’s
foremost thought leader on population aging and its profound business, social,
healthcare, financial, workforce and cultural implications.
National Private Duty Association
Older Adults Care Management (A division of IOA)
Bright Horizons
Provide backup Caregiving if
a regular caregiver cancels for a day.
Locators for Facilities and Services
AARP
Locator by state, county,
city to 17,000 SNFs
The Senior Roundtable
In the San Francisco Bay
Area, a monthly meeting of people in the Senior Market that is excellent for
networking.
Living Well, Assisted Living at Home
Beacon Hill Village
For community-based services,
check with local Area Agency for Aging.
National Association of Area Agencies on Aging
National Aging in Place Council
Center for Aging Services Technologies
National Association of Home Builders, Certified Aging-In-Place Specialist
Person Care
Products and resources for seniors
Senior Centers & Adult Care Centers
U.S. Administration on
Aging’s Eldercare Locator
www.eldercare.gov or 800-677-1116
Sites that rate institutions and services
California Health Care Foundation
National Citizen’s Coalition for Nursing Home Reform
California Advocates for Nursing Home Reform