Chapter 3: Options When Home Care Isn't Enough

Home care offers the support option that best enables an individual to maintain their autonomy and remain in their home. While these resources are available and are highly effective in helping individuals maintain their independence, they are not available to all. Many of the options for home care require financial resources which may exceed the capacity of the person or their family. Many are surprised to learn that Medicare only covers limited skilled care provided intermittently, and not longer term custodial care that is continuous. Joan Millet, a healthcare consultant in the Boston area, explains, “Unless loved ones are incompetent, they should be the ones making the decision.” She adds, “patients have concerns regarding the cost of care and that all alternatives to the patients care should be discussed and comparison costs presented.”  Often, patients and families may elect to pay privately for care needed that exceeds what Medicare or other coverage provides in order to remain at home. This option should be explored, as it may in fact be less expensive than a nursing home or assisted living facility.

There may come a time when home care no longer may no longer be enough to help the older or infirm person maintain themselves independently at home, and a residential, congregate care setting is needed. There is a continuum of these residential settings. As we discussed earlier, every effort should be made to respect the autonomy of the person. This means helping them into the least restrictive care setting that will safely meet their needs. For example, if a person only needs assistance with medications daily and help showering several times a week, the assisted living option may be best. If they are placed in a more restricted nursing home setting, they are put in a position of loosing more independence than they may need to. Barb Przybylowicz, an owner of an Ohio company specializing in equipment that prevents seniors from sliding out of chairs offers, “Often times nurses and families are confronted with weighing potential benefits against potential harm. These are difficult decisions that have to be dealt with and one shoe doesn’t fit all. Each circumstance may be similar, but all aspects need to be met and approached individually.”

Let’s explore the different levels of congregate, residential care. The first level is supportive housing. In this model, the individual lives in an apartment but has the ability to purchase housekeeping services and participate in community meals and activities. Health services are minimal and are typically provided by an outside home health agency. The person needs to be mobile and fairly independent in this model. Typically, the advantage here is that the person is relieved of the burden of having to maintain a house or apartment. That maintenance and support is provided by the housing management. Their quality of life may also be improved by easy access to activities and socialization with others, where they may have been previously isolated living alone in a home.

The next level is assisted living. In this option, the individual has his or her own apartment and receives support with housekeeping, home health aide, nursing, and other services which are provided in a fashion similar to how they are delivered in home care-- except they are delivered in a congregate setting where staff is available around-the-clock. Assistance can be summoned by a call light or personal emergency response pendant. For this level of care, the person needs to still be pretty mobile, able to ambulate and transfer, but may need assistance with most meal preparation, personal care, and supervision of medications. Some of these centers specialize in memory loss and provide a controlled environment to prevent wandering off. Again, as with the case of home care, assisted living is considered custodial care and is not covered by Medicare and can be very expensive.

For the person who needs continual access to skilled nursing or aide service for mobility and care, the nursing home setting is the option. In this setting, the person resides in a single or semi-private room, not an apartment. Nurses provide treatments and medication administration and monitor the health status of the residents. Aides assist with bathing, toileting, ambulation, etc. Therapists are available to provide physical, occupational, or speech therapy. An organized activities program is planned for based on individual needs. Physicians are typically available on-site most days. This setting offers the most intensive services around the clock, but is also the least autonomous environment for the individual. Medicare may cover the first 100 days of a nursing home stay if it occurs right after an acute illness or injury requiring hospitalization for at least three days and there are skilled needs. After those needs are addressed, or 100 days (whichever comes first), the care is considered custodial and is no longer covered by Medicare. Custodial care may be covered by long term care insurance, Medicaid, or self-pay.

There is a model known as continuing care retirement communities (CCRCs) which span the whole range of options discussed above. Seniors can sell their homes and purchase an apartment in a setting which offers the appropriate setting depending upon their needs at any given point in time. The models for the investment and coverage by CCRCs vary, and need to be carefully explored. This option can provide a wonderful opportunity for self-funded care as the individual becomes less and less independent.

For all residential models, there have been tremendous strides in recent years to make care more person centered. Efforts are underway to make the care settings and processes less institutional and more home like. Residents are offered more options and their likes and dislikes are taken into consideration. For example, rather than meals being served on trays delivered to their table with food that was plated in a distant kitchen, staff now plate food right in the dining room from hot tables. This allows residents more flexibility in getting hot food during a span of several hours without having to be in the dining room at a rigid time. It also gives them more options to make a last minute change about what they want to eat or the size of their portion.

Choosing a residential option is a difficult and emotional decision. If it is the right time for moving to congregate care from home care, there will usually be a relief and improvement in the quality of life for both the individual and their family. The transition from home to placement in such a setting is a rocky one representing lost autonomy and independence. This rockiness can be minimized by preparation and planning. Bringing items or even furniture from the individual’s home to the new setting may help them establish this new place to live as safe and comfortable. If it is a possibility, visits to the new setting ahead of the actual admission or transfer can also lessen anxiety. Eventually, these emotions are often replaced by settling in and enjoying the company of others and the support of caring staff. Obviously, choosing the right facility is important. Fortunately, information on nursing home quality is readily available on the state department of health and CMS Nursing Home Compare web-sites. Look for quality ratings, staffing levels, and performance on annual inspection surveys. Don’t base your assessment of a facility on the lobby-- they are always putting the best face of the organization forward. Instead, get a tour of the facility and notice whether or not staff are engaged in meaningful activity with residents, how they are being treated and talked to, and the overall sense you get if the residents are happy. Choosing a facility is a serious responsibility. When executed well, the benefits can be substantial.