Our first column on Care Options focused on moving a parent or other relative who was still fairly independent into a new living situation as he or she needed a little more help with everyday tasks.
In this column, we’ll focus on more advanced care needs. You may be dealing with chronic or progressive conditions such as Alzheimer’s or Parkinson’s disease, diabetes or congestive heart failure, or a sudden crisis like a stroke. Care may be needed 24/7, and it might not be feasible for you to provide all the required care at home.
Speak with as many residents as you can. If the community under consideration is required to be licensed, ask to view the facility’s history of compliance with minimum standards and the number and types of complaints that may have been filed against the facility.
Costs: It’s important to understand that Medicare doesn’t generally cover the costs of long-term care, particularly when it’s provided at home or in an assisted living facility. Private long-term care insurance policies can help, but may have limitations and loopholes, and are quite expensive. They must be purchased before care is needed.
Options for Residential Care:
- Residential Care Facility (RCF): These facilities are small group homes (sometimes called board and care homes, residential care homes or adult foster homes) that provide supervision, meals and care for people who cannot be left alone but do not require skilled nursing care. Residential care facilities provide assistance with bathing, grooming, eating, using the toilet, and walking, and they also provide socialization, some recreational activities, and a more home-like atmosphere. Rooms may be private or shared.
- Assisted Living Facility (ALF): Individuals who are somewhat independent but require daily oversight and assistance with housekeeping, medication management and personal care will want to consider an assisted living facility. Assisted living facilities offer rooms or apartment-style accommodations and, often, social activities. Meals are provided in a shared dining room. Staff is available to assist with care needs such as transportation, bathing, medication management, grooming, eating or using the toilet, and care is arranged as needed by the individual. Nursing staff may be on-site or on-call. The monthly charge for assisted living is determined by rent plus the amount of care a person requires and varies widely throughout the U.S.
Some assisted living facilities are dedicated to — or include a separate wing for — those with Alzheimer’s disease or other memory impairments. These dementia care or memory care units offer a special security-protected environment, and social and other activities designed for the abilities of the residents.
There are several online guides to assisted living facilities to help find a unit in your geographic area, but the guides are not necessarily comprehensive. A little investigative work, along with personal recommendations, can help to find a facility that fits your family’s needs.
There are also companies that will consult with you as you seek assisted living or an RCF, but keep in mind that although this service is generally offered at no cost to you, consultants are paid commissions by the facilities for referrals. Nonetheless, some of the consultants are very knowledgeable about resources in your community, and that’s another avenue to explore.
- Skilled Nursing Facility (SNF): Commonly called nursing homes, these facilities provide nursing services 24 hours a day and are designed to provide high levels of personal and medical care, such as administering injections, monitoring blood pressure and managing ventilators and intravenous feedings. People living in skilled nursing facilities usually require help with the majority of their self-care needs; it would be very difficult to provide this level of care in a home environment.
Medicare may pay for a time-limited stay in a nursing home after hospital discharge, on a doctor’s orders. Medicaid may help cover the costs if residents meet specific financial and medical requirements. Some families qualify for Medicaid assistance after they have “spent down” their assets to a minimal amount. An elder law attorney can help you sort through the complex rules.
One source of information on facility quality is Medicare’s online Nursing Home Compare, which provides ratings of nursing homes. However, please keep in mind that the data is self-reported. Use that as one tool, but combine the information with visits to the facility, recommendations from friends and/or professionals in the field, and your own intuitive reaction during your visit.
- The Eden (or Greenhouse) Alternative is a program in certain nursing facilities around the country to make the environment more elder-centered and less institutional. These are set up to encourage as much independence and interaction as possible for the residents, and to be more home-like. Contact with plants, animals and children is encouraged. For a listing of currently-certified Eden/Greenhouse facilities, visit www.edenalt.org.
- The Program for All Inclusive Care (PACE) is designed for people 55 years or older certified by the state where they reside to be nursing-home-eligible, but who can remain at home with a wide-ranging complement of health and supportive services. Sometimes referred to as a “nursing home without walls,” this growing care option is available in many, but not all, parts of the country. Most participants are Medicaid-eligible.
- Continuing Care Retirement Communities (CCRCs) (sometimes called “Life Care”) offer independent, assisted and skilled nursing facilities all in one location. If a person’s health deteriorates, a disruptive move to a new community is not necessary. These communities often can be quite large and generally require a substantial entrance fee, in exchange for a guaranteed spot when higher levels of care are needed. Costs may increase as care levels increase.
- Special note for Vets: Veterans’ Communities may be available in your state, and offer multiple levels of care. From independent living with supportive health and social services, to skilled nursing facilities, these communities permit a veteran (or their spouse) to live in the same community. If eligibility requirements are met, rates for certain facilities are highly subsidized or free.
- Why more seniors are going back to college — to retire
- Coping with Alzheimer’s: A mother and daughter portrait of long-term care
- Taking cues from ‘Golden Girls,’ more single baby boomers are building a future together
- There’s no place like home: seniors hold on to urban independence into old age
- Foster families find and share support with elders at Oregon housing community
- Increasing demand moves long-term care centers to cater to Latino elders
- Caregiving With Your Siblings
- Community Care Options
- Downsizing Your Home: A Checklist
- Hiring In-Home Help
- Holding a Family Meeting
- Legal Planning for Incapacity
- Home Away from Home
Again, regardless of the type of facility you choose, be sure to visit each one. (A fancy lobby doesn’t necessarily mean that care is high-quality!) Don’t be shy about asking a lot of questions. Ask about fees, of course. Ask about ratios of staff to residents, and what the rate of staff turnover is. A preliminary visit should reveal a facility that is clean, smells pleasant, and has staff that is actively, gently and respectfully interacting with residents.
As a caregiver, you’ll still have a fundamental role if your parent moves into residential care. While you’ll no longer be responsible for the hands-on tasks, you’ll serve as frequent visitor, liaison, and, especially, advocate. You’ll likely be involved with paying bills, arranging medical appointments, talking to health care practitioners, and ensuring appropriate follow-up care. You’ll get to know the staff, check that proper diet and medications are provided, that your parent is participating in social activities as much as possible, and that he or she gets attention when needed. And, because your parent may not be able to, you’ll be his or her voice to express gratitude or request changes in care. It’s an important — even indispensable — role to play.
More Information & Resources
1900 So. Clinton Ave.
Rochester, NY 14618
National Center for Assisted Living
1201 L St., N.W.
Washington, D.C. 20005
Choosing an Assisted Living Residence: A Consumer’s Guide
US Department of Veterans Affairs
Long-Term Care Options Explored on PBS NewsHour:
About Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.
Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.
Residential Care Search: listings by geographic area.
Helpful Publications from Family Caregiver Alliance:
Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the U.S. created to address the needs of caregivers. FCA and its National Center on Caregiving are nationally and internationally recognized for pioneering programs—information, education, research and advocacy—that support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. Visit www.caregiver.org or call (800) 445-8106 for more information.