When you commit to one of the most difficult — but possibly among the most important and rewarding — responsibilities of your adult life, it can be overwhelming. Many parents in the middle generation have taken on the added role of caregiver for their own parents.
How will you fit that new dynamic into your already-busy schedule? How much care will be needed? Where do you go? How will you afford it?
There’s a name for middle-age folks who have children under the age of 18 and who have one or more parent still living: AARP calls them the Sandwich Generation.
Nearly half (47%) of adults in their 40s and 50s have a parent age 65 or older and are either raising a young child or financially supporting a grown child (age 18 or older), according to Pew Research Center. And about one in seven middle-aged adults (15%) is providing financial support to both an aging parent and a child.
Many caregivers have either a full-time or part-time job while caring for both groups — 34% and 25%, respectively, says the Shield My Senior website.
Providing financial and emotional support to two generations at the same time can create stress and tension at home when the middle group is being pulled in many different directions.
WHEN IS A CAREGIVER NEEDED?
Caregivers face many challenges: physical, emotional and financial stress, understanding legal options, assessing the service systems while balancing demands and family dynamics.
Seventeen percent of Americans are currently caregivers, and of those, 83% are related to their care recipients, according to Jennifer Campbell, owner of Age Advantage Senior Care Services in Winter Garden.
Before deciding on the level of care needed for your loved ones, their situations must be assessed, she said.
• Is more of your time and energy focused on your loved one?
• Has there been a change in their health?
• Are they unable to do the things they used to do?
• Are they relying on you more?
• Is their present living situation unsuitable?
• Are you worried about them more?
BEFORE A CRISIS
It's a good idea to gather as much health information as you can on your loved one before there is a crisis.
• Health data — medical history, prescription and over-the-counter medications and immediate medical problems
• Financial and legal information — health and life insurance coverage, power of attorney, advance directive for medical care, living trust or will and bank accounts and investments
• Resources that can help support parents safely at home — community services and local care-giving services
• Government programs that can help defray expenses — Social Security, Medicare/Medicaid, Veteran's Administration and local government programs
TYPES OF ELDER CARE
• Adult day programs — An option for elders who do not require round-the-clock care but also are not safe remaining at home all day alone. Programs emphasize social interaction and programs exist to fulfill medical needs. Most are community-based and generally available only during regular weekday business hours.
• Independent-living facilities — Elders can rent or purchase an apartment or condominium within a complex or campus offering recreational and social activities and, sometimes, transportation services. Residents live independently while being part of a community of others in similar circumstances. Generally, no special health care services or assistance with activities of daily living are offered.
• Assisted-living facilities — They offer residents comprehensive help with activities of daily living but also feature an essentially independent living arrangement. Elders generally will occupy their own unit or apartment within the facility from which they can come and go as necessary. They will have access to personal-care workers as necessary to assist with their care needs. Skilled nursing services are not available on-site, typically, but basic health services may be offered. Recreational and social activities are also available.
• Nursing home care — Nursing homes provide care for elders requiring constant, around-the-clock care. Care is provided by licensed health professionals, including registered nurses, licensed practical nurses and nurses’ aides. Elder nursing home residents will reside in a room within the facility. Housekeeping and linen services, meals and care from the medical staff and a social worker are included. Elders may also be offered on-site social and recreational activities.
• Family-provided and in-home care — This type can occur in one of two ways. Either elders remain in their own home with family members providing them with assistance, or elders move into the home of a family member. In either situation, in-home professional caregivers might still be needed to provide care during work hours or other times when family cannot be present.
It’s equally important to understand the differences between home-care agencies and caregiver registries.
• The key difference between agencies and registries is the caregiver’s employer.
• Registries or referral services do not employ their caregivers.
• Agencies take full responsibility for employing their caregivers.
Look for these indicators that a caregiver is well-qualified and likely to provide compassionate care:
• The caregiver is carefully screened before coming to your home for an interview.
• The caregiver is bonded, insured and covered by Worker’s Compensation insurance.
• The caregiver is experienced in specialized cared that your loved one might require, such as Alzheimer’s disease, dementia, arthritis, hospice care or mental/physical challenges.
• Match your loved one’s needs and personality to an experienced caregiver with the skills that will provide the best care and companionship.
• Be sure there is professional oversight of the caregiver to ensure services will be provided safely.
• Ensure there is supervision in place that delivers ongoing assessments of care and recommendations as your loved one’s needs change.
HIRING A HOME CARE AGENCY
Home care is a great first option for seniors who require very little change. It's flexible, allows couples to stay together longer and provides the benefit of one-on-one care at home where people are most comfortable.
Benefits of hiring an agency include back-up caregivers, caregiver replacement, bonding, insurance and licensing, supervision of staff, background checks, Worker’s Compensation and experienced caregivers who are available 24 hours a day year-round.
Campbell provided important questions to ask a home-care agency:
• Are your caregivers employees?
• What are your hiring requirements?
• Are your caregivers supervised? How often?
• How do you know if your caregiver has reported to work?
• How long does it take you to replace a caregiver who has not shown up to work?
• Can you be reached outside of business hours? How quickly?
• Do you develop a comprehensive care plan with the patient prior to services? Is this information shared with the caregiver?
• What benefits do you offer your caregivers? (caregivers with benefits are long-term caregivers)
• Do you require the client’s to sign a service agreement? Do you require a deposit?
WAYS TO PAY FOR ELDER-CARE SERVICES
• Privately paying for long-term care means paying for care out of your own income, investments, savings and assets.
• Long-term care insurance will pay for in-home care, assisted living and nursing home care. This is the most appropriate and needed form of insurance protection available today. Long-term care insurance could be called “lifestyle” insurance.
• Reverse mortgages (home equity conversion mortgages) have become one of the most popular and accepted way of paying for many different expenses, including the cost of long-term care. Such mortgages are designed to keep seniors at home longer. A reverse mortgage can pay for in-home care, home repair, home modification and other needs.
• Government assistance should be a last resort when considering how to pay for long-term care. This type of assistance refers to relying on the Medicaid system. Medicaid will pay for long-term care for seniors who cannot afford to pay for care themselves; however, Medicaid resources are limited. This means that in many areas Medicaid beds in nursing homes are difficult to find. Families may end up driving long distances to visit loved ones.
• VA Aid and Attendance Pension Benefit: The Veterans Administration has established a pension program in which your purchase of personal care and attendant home services may be paid for through your acquired pension. If you are a veteran or the surviving spouse of a veteran and meet guidelines, you might be eligible for VA's non-service connected disability pension.
• Medicare and Other Health Insurances: Medicare is a federal health insurance program for people 65 and older, certain people with disabilities and End-Stage Renal Disease. It pays for much of one's health care, but not all of it.
• There are other kinds of health insurance that may help pay the costs that Medicare does not. Medicare supplements (Medi-gap policies) and long-term care insurance will pick up some of the costs that Medicare will not pay for.
RESOURCES FOR CAREGIVERS
You have taken on the huge and important role of caregiver for one or both of your parents. What’s your next step?
Orange County Government and the Orange County Office on Aging, (407) 836-6563, provide a guide for senior services, and the list includes resources for caregivers, a seminar series and a free newsletter.
• Senior Resource Alliance serves as the Central Florida Area Agency on Aging and manages a number of programs, such as Community Care for the Elderly, Home Care for the Elderly and Respite for Elders Living in Everyday Families — SRAFlorida.org, (407) 514-1800
• Orlando’s Senior Help Desk provides information and referral assistance. Service offered by Jewish Pavilion — orlandoseniorhelpdesk.org, (407) 678-9363
• 50+FYI Resource Directory lists services and programs for elders — 50plusfyi.org, (407) 265-0534.
AARP provides a list or agencies and organizations that offer resources to caregivers:
• AARP Online Community discusses issues with other caregivers in the online community — community.aarp.org
• Alzheimer's Association offers information and support for people with Alzheimer’s disease and their caregivers — alz.org, (800) 272-3900
• Alzheimers.gov is the government’s free information resource about Alzheimer’s disease and related dementias — alzheimers.gov
• ARCH National Respite Network and Resource Center finds programs and services to give caregivers a break from care — archrespite.org
• Caregiver Action Network provides information and education for family caregivers, including a volunteer support network in more than 40 states. caregiveraction.org
• Eldercare Locator connects caregivers to local services and resources for older adults and adults with disabilities — eldercare.gov, (800) 677-1116
• Family Caregiver Alliance offers information, education and services for family caregivers, including the Family Care Navigator, a state-by-state list of services and assistance — caregiver.org, (800) 445-8106
• Hospice Foundation of America provides information on issues related to hospice and end-of-life care — hospicefoundation.org, (800) 854-3402
• Medicare provides information about the parts of Medicare, what's new and how to find Medicare plans, facilities or providers. Medicare.gov, (800) MEDICARE
• National Alliance for Caregiving is a coalition of national organizations focused on family caregiving issues — caregiving.org
• National Institute on Aging Information Center is a research leader on aging issues and gives information on common age-related health problems — nia.nih.gov, (800) 222-2225
• The National Clearinghouse for Long-term Care Information provides information and tools to plan for future long-term care needs — longtermcare.gov
• Social Security Administration offers information on retirement and disability benefits — socialsecurity.gov, (800) 772-1213
• State Health Insurance Assistance Program offers one-on-one insurance counseling and assistance to people with Medicare and their families — shiptacenter.org
• Veterans Administration offers support and services for families caring for veterans and maintains a VA caregiver support line — caregiver.va.gov, (855) 260-3274
• Well Spouse Association provides support for spousal caregivers — wellspouse.org, (800) 838-0879