People are living longer than at any time in history, which means more older adults require assistance with their needs over more of their lifespans. Most often the first line of support is an adult child, sometimes elderly themselves. And, with people having fewer children, the pool of caregivers is smaller. Added to that, greater geographic mobility means many older adults don't have children nearby.
Caring for an aging parent can be very challenging. It can tax your emotions, your physical ability, energy, other relationships, job performance, health and finances. It can also be rewarding and fulfilling, a chance to give back to a parent who raised you, a chance to transcend your own worries and do something for someone else. It is important to know that you are not alone - there are many sources of support in the community.
The best approach to planning for the time when your parents are no longer self-sufficient is to talk with them about it before a crisis occurs. This may not be easy, especially if you and your parent(s) have avoided frank discussion of sensitive topics in the past. It's often easiest to look for a "natural" time to talk about future "what ifs." For example, when someone your parent(s) know has just suffered a health crisis or moved into an assisted living facility, you might ask, "Mom, when you aren't able to live here any longer, what kind of place would you like to live in? Have you and Dad talked about this yet?" A natural time to start a discussion about end of life planning, such as a will, a living will or burial preferences is when a parent says, "When I die..." Then, listen attentively, encourage them to say more and don't shut off communication by saying, "Don't be morbid," or "You'll probably outlive all of us."
Often, the most common mistake adult children make in trying to help aging parents is to overestimate their parents' needs (i.e, to underestimate their ability to be independent). People resent forced dependency. Remember, unless they have been diagnosed by a professional as mentally incompetent to make major life decisions, the choice of when, whether and where to move, or accept any assistance, is your parents'.
It is best to involve the whole family from the start in the discussion of needs and resources, in order to get everyone's buy-in on any decisions made, and to maximize the sharing of the tasks of caregiving. The best way to do this is with a family meeting. Invite everyone, even those with "difficult personalities" or meager resources, and those who live at a distance - they can call via speaker phone. Then, conduct it like a business meeting: distribute an agenda in advance, take note about any decisions or next steps agreed upon, type and distribute notes afterwards. If you anticipate problems with a meeting, have a professional lead it. It may be wise to have your parents' lawyer attend.
If you, your parent and other family members are unsure about the best living arrangements, or about what other services might be needed, a geriatric assessment can help. This is a comprehensive assessment of their physical, mental and emotional strengths and weaknesses, and should lead to specific recommendations for the appropriate level of care. Resources for obtaining geriatric assessments include the older adult's primary care physician, local hospitals with geriatric programs, a neurologist, or a gero-psychiatrist. If applying for Medicaid, a team from the local Public Health and Social Services Departments will do a geriatric assessment.
When you believe your parent is no longer able to live independently, but he or she is reluctant to accept help, you need to take the time to listen and understand the reasons behind the resistance if you are going to have any success in resolving it. Ask questions, listen patiently, and try to learn the reason for their resistance. Are they concerned about the cost? Do they feel they don't have a problem or don't need help. Do they view agency assistance as welfare? Are they fearful about a stranger coming into their home?
Empathize with their feelings, "I know it must be hard for you to give up this place that has so many memories for you ..." Use "I messages" to express your concerns (e.g., "I'm worried that you will have another fall and no one will be available to help you") not "you messages" such as, "You must move Mom, this home just isn't safe." Be as objective and specific as you can in describing your observations.
Other strategies for gaining your parents' willingness to be more flexible include: get their physician or pastor to participate in the discussion; emphasize the positive, not what they can't do; avoid making irrevocable decisions as much as possible, but rather suggest a "trial period;" give a service as a gift (e.g., home-delivered meals); if they are reluctant to accept welfare, explain that their lifetime of paying taxes has paid for the service.
Most older adults would prefer to stay in their own homes. Fortunately, there are several ways to accomodate this preference. First, consider physical modifications to make the home safer. For example, install grab bars next to the toilet and bathtub; remove throw rugs and extension cords; adjust hot water settings to 120 degrees to prevent scalding; use non-skid mats in the bathtub; install adequate lighting at the top and bottom of the stairs, with switches both places, etc. Check with the local Area Agency on Aging (AAA) listed in the business white pages for resources to identify and help perform modifcations. A wide variety of community services exist to support older adults living at home. These include Meals on Wheels; a chore service to help with heavy chores such as moving furniture, shoveling snow or yard work; a homemaker to assist with housework and meal preparation; a home health aide to assist with bathing, dressing and medical needs; telephone reassurance or "friendly visitor" services where a volunteer makes a check-up call by phone or in person at predetermined times; transportation services for appointments and shopping; Personal Emergency Response Systems; and Senior Centers where a variety of services may be available, including recreation, socialization and hot meals. If appropriate and the older adult is actively involved in the screening process, home sharing may be an option. This would be a boarder, who is charged a reduced rent, or no rent, in exchange for their caretaking services.
If staying in their home is not an option, than alternative living arrangements (other than staying with relatives) becomes necessary. Following is a continuum of such living arrangements:
Retirement communities are housing complexes for active, independent elderly persons. Housing styles vary: single family homes, duplexes, townhouses, high-rise apartments and condominiums. They vary in what services they provide, which might include home maintenance and repair, grounds maintenance, housekeeping, group dining, social activities and transportation. Prices vary greatly, accordingly, and they usually require a substantial initial investment. What they usually do not provide is nursing care or assistance with activities of daily living such as eating, bathing and toiletry. Residents are expected to be independent in these areas, as well as mentally alert and able to get around on their own. The major advantages of retirement communities are living in your own home while having help available for certain tasks, and living in a community of people of similar age and interests.
Continuing Care Retirement Communities(CCRCs) offer, in a single setting, a complete range of housing and health care - from independent living to assisted living to nursing care. Residents pay an initial fee plus monthly maintenance fees in return for a guarantee of lifetime care. Residents move from one level of care to another as their needs change. CCRCs are particularly advantageous to couples, enabling them to stay in the same community even when one partner needs a greater level of assistance than the other. Also, support systems are not interrupted by moving as needs change.
Assisted Living (sometimes called board and care homes, adult care homes or personal care homes) offer 24 hour supervision and a variety of supportive services, including meals, moderate assistance with personal care, medication supervision, laundry, housekeeping and social activities. These facilities are designed to meet the needs of the frail, older person who does not need nursing home care, but can no longer live alone at home.
Hospital-based skilled nursing facilities provide the highest levels of medical and nursing care, including 24-hour monitoring and intensive rehabilitative therapies. They are intended to follow acute hospital care and are not meant for permanent residence. They are usually covered by Medicare or private insurance.
Non-hospital-based skilled nursing facilities(SNFs) provide a relatively high level of nursing and other medical care 24 hours a day, as well as personal care and assistance and assistance for people whose illnesses or impairments require close monitoring. SNFs can be for either short-term post-hospitalization recovery or long-term residence for people with serious, chronic impairments. Medicare and private insurance will pay only up to their coverage limits, and only if the care is prescribed by a physician.
Intermediate Care facilities(ICFs) provide less nursing and other medical care than SNFs, and are for long-term residents with chronic illnesses or impairments. Staff is geared as much toward personal care and assistance as toward medical care, although there is a nurse on duty. There is no coverage by Medicare, and private insurance coverage is rare. Medicaid, however, may cover much of the cost.
Custodial Care facilities(CCFs) , often called nursing homes, are for individuals who do not need skilled nursing care, but do need substantial help with personal care. Often this level of care is required by persons suffering from dementing illnesses, such as Alzheimer's disease. It is the least expensive and most common level of nursing facility.