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.

Care Resource: Alzheimer's Disease Resource Center

Today I visited with Robin Lombardo, VP of programs and services and learned about great support group and training programs offered for persons with Alzheimer's on Long Island. It was exciting to see the adult day care program they are developing at their facility in Bay Shore. Robin is shown here in front of their fabulous wander garden. Check them out at http://www.adrcinc.org

Chapter 2: Getting Help at Home

As time progresses, and mom or dad’s physical functioning or cognition deteriorate to the point where they can’t remain living independently without help, there is a wide continuum of services that you can access to support them at home. Considering the older adult’s need for autonomy, the rule of thumb when planning for which service to access is to pick the one that provides the appropriate level of assistance needed to allow them to function as independently as possible. For example, a person who just is forgetful about his or her medications probably does not need to be placed in a nursing home setting prepared to provide total care. Conversely, a bed-bound person with pressure ulcers and a feeding tube and minimal resources would probably not be well served to be placed on home care. The first level of this support is home care, provided in the individual’s own home, or the home of a loved one or significant other with whom they are staying. Home care is generally an option when the individual requiring care has enough independence to be left alone for periods of time, is able to summon help if needed, and can ambulate or transfer from bed to chair either independently, or with minimal assistance. There are several types of home care: skilled and chronic.

Skilled home care is generally limited to a period of several weeks to several months. The focus of this type of home care is to provided skilled intermittent services to help the patient recover from an acute illness or injury. A Registered Nurse makes a home visit to make an initial assessment of needs and establishes a plan of care. Services planned may include additional nursing visits for ongoing symptom management, medication reconciliation and supervision, and skilled care such as dressing changes, catheter care, injections, etc. If needed, rehabilitative services in the home may be scheduled for several times a week by a physical, occupational, or speech therapist. Several hours of home health aide service several days a week may be scheduled to support the nursing or rehabilitation plan of care with bathing, exercises, ambulation, simple meal preparation, and other personal care. These services are provided until the restorative goals are met, usually within two to six months. Social workers are available to help with longer term planning.

Chronic or long term home care is focused on providing services over a longer period of time, or even permanently, to help an individual remain at home. The services again begin with a nursing assessment visit. In this case, the home supervision visits by a nurse occur only every several weeks or even monthly. Home health aide services for bathing, personal care, meal preparation, and light housekeeping can be provided up to daily for as few as two and as many as twelve hours and may be covered in whole or in part by long term care insurance or Medicaid. Twenty-four hour and live-in services may be provided, but typically are not covered by third parties such as insurance or Medicaid.

Complex care can be provided in home to enable a person to return to home sooner than might otherwise be the case. An insurance company, for example, may be willing to provide financial coverage for a home care agency to provide home intravenous infusion or medication therapy as it may be less expensive for that person to be cared for at home rather than in a hospital. Even dialysis and pulmonary ventilator care can be provided in the home setting. Coverage varies from policy to policy, and the given situation.

Safe home care of any level depends upon the availability and engagement of committed family and friends. The home care agency cannot provide staff around the clock at all times. Reputable agencies will not admit patients who do not have a safe home environment and support system available. The degree to which home care can help someone remain independently at home depends not only the availability of the resources of nurses, therapists, aides, etc., but also the financial resources the individual has to access these resources. These financial resources may be in the form of personal assets, or coverage by insurance or Medicaid. Home care agencies will make home evaluation visits without charge. The purpose of these home evaluations is to assess the needs and resources of the individual, and to determine if home care is appropriate. If so, the nurse will contact the primary care provider of the individual for medical orders and certification of the need for home care, and will plan and initiate services.

Chapter 1: Autonomy vs. Safety

As a person ages, physical and cognitive changes can occur that challenge their independence and ability to live alone or with a partner who is equally debilitated. The desire for independence is a built in human need that begins to emerge in infancy and continues through life. This independence is necessary for us to successfully emerge from the protection of our parents. It is this same independence that creates a challenge for grown children who seek to help their parents negotiate their emerging limitations. Just as a child stubbornly strikes out for his or her own autonomy, so too does that same person as an aging parent stubbornly fight to maintain it. In both the case of child and aging adult, this sought and fought for autonomy may run in the face of what may be safe and reasonable. Just as a parent needs to let a child take risks and develop this autonomy so they can develop into their own person, so must an adult child let his or her parents take risks to maintain their autonomy so they maintain that personhood.

The challenge in both the case of the child and the aging adult is to allow enough risk for the person to develop and exist, while at the same time providing guidance, boundaries, and if necessary intervention to maintain their safety. This challenge exists along a continuum of risk, from very low to very high. Unfortunately, the lower the risk the less autonomy the individual frequently enjoys. If you, as a grown child of an adult parent do not fully grasp this concept, you will be frustrated and probably be headed for major battles with few desired outcomes. In fact, grasping this concept may require you to redefine the desired outcome. For example, an expectation on your part that mom or dad will never fall at home may require continuous supervision and limited activity. If they don’t move much, there is less chance they will fall. When they do move, if someone is with them, they will be caught before they can fall. How enjoyable an existence will it be for them if their activities are limited? And if activities are limited, don’t they become subject to side effects of immobility such as pneumonia, pressure ulcers, and decreased ability to ambulate due to muscle wasting? Not to mention the invasion of their privacy and autonomy if their every motion has to be monitored and supervised by another person.

If the expected outcome is changed, the frustrations may be lessened. This may increase the risk, but also may increase the chance of success. Consider what happens if we change the expected outcome from “mom or dad will never fall at home” to “mom and dad will have a reduced chance of falling, and if or when they fall, they will be less likely to get hurt and will be able to summon help quickly.” In this later example, we still implement measures to reduce the chance of mom or dad falling. These measures may include things like taking up throw rugs and other tripping hazards, installing night lights around the house or apartment, and providing a walking support such as a walker or cane. The lack of constant supervision, however, increases the risk of a fall. By redefining the goal to expect that they will be less likely to get hurt and can summon aide quickly, we implement other interventions. These may include providing supplemental calcium to strengthen bones (with medical provider’s guidance), removing sharp objects and pointed-end furniture from the environment, dressing mom or dad with hip pads that help to cushion a fall, etc. The ability to summon assistance quickly can be achieved actively through providing mom or dad with a subscription to a personal emergency response system (like the one seen in the famous “I’ve fallen and I can’t get up” commercial), or a passive system like a home monitoring device that picks up motion in the home and calls or texts a neighbor or relative if no activity takes place over a certain amount of time.

For an older person experiencing dementia and wandering, there is a natural inclination to keep them safe by seat belting them into a chair to keep them immobile and safe. Wrong answer! Seat belts, or other restraint devices that keep a person immobilized are extremely dangerous. At the very least, they contribute to muscle wasting from the activity limitations. At worst, they can cause death when an individual struggles to wiggle free of them and may actually slide beneath and become entrapped and strangled. A more appropriate approach is to create an environment where the person can safely wander by removing any trip hazards, or other things in the environment that may be hazardous if run into, touched, or eaten. Put two knobs on the door that must be turned together to open an outside door (not an easy task for even a person not cognitively impaired, and place an alarm on the door in case it is breached either by the person with dementia or a visitor. Be aware of fire safety and never dead bolt doors shut with people inside with no way of escape in case of fire.

The father of a friend of mine recently passed away at his home after returning there from a holiday party. He went inside the house and told his wife he wasn’t feeling well. She went over to him and held his hand, he kissed her, and he died. This wonderful man never suffered the indignity of loosing his independence and leaving his home to live in a nursing home. Death does not happen as suddenly and peacefully for all. Over time, individuals frequently decline to the point that as much as we strive to help them maintain their autonomy, it becomes too unsafe or impractical for them to remain at home. The point at which this occurs differs for each individual. There are several key markers from my experience that tend to help families establish when the time is right. Some of these markers include, but are by no means limited to:

• inability to transfer from a bed to chair
• inability to ambulate with an assistive device to the bathroom or a commode chair
• inability to control significant and frequent bladder incontinence (leaking and occasional accidents can be handled with a brief or diaper)
• aggressive behavior to loved ones or caregivers
• inability to eat without significant assistance

When one or more of these markers becomes present, it is time to have conversations about the reality that home based care may be exceeding what is reasonably safe or practical. In fact, the quality of life experienced when an individual with these limitations may be significantly improved if they move to a setting where appropriate support and care is available. Families often report having improved relationships with mom or dad when they are placed in an appropriate setting because they can focus on enjoying their company rather than battling over care routines. The difficulty of making this decision cannot be minimized. Remember to be respectful of the person’s autonomy if their cognition remains intact enough to understand what is happening to them. Be careful to acknowledge their loss, and provide support and reassurance through this difficult reality.