CHS Continuing Care Now Operational in Farmingdale

The Continuing Care Division of Catholic Health Services of Long Island has consolidated its administrative, finance, home care and hospice offices into a single 49,000 square foot location on Bi-County Blvd. in Farmingdale.  "This consolidation allows us to save approximately $1.3 Million per year in duplicative overhead and programmatic redundancies," points out Joseph Tomaino, Executive Vice President and CEO of the division.  Clinical programs operating  from the new site include Catholic Home Care, Good Shepherd Hospice, Good Samaritan Long Term Home Health Care program, and Our Lady of Consolation Long Term Home Health Care program, all under the direction of Mary Ellen Polit, Chief Administrative Officer. The new facilities make optimal use of technology, with a SmartHome display in the lobby to show patients and staff how advances can help maintain chronically ill at home, special tele-monitoring workstations,  as well as state of the art conference and training facilities.  One of the conference rooms has been set up to function as an Emergency Command Center in the event of a natural or human disaster.  The design of the offices by CHS' Jim Proce and his team focused heavily on providing a positive and healthy work environment for staff, and several exam rooms were included in the human resources area so a nurse practitioner could upgrade the level of services provided by employee health.  From this Continuing Care Center, care is coordinated and managed for over 2000 home care patients, nearly 400 hospice patients, about 790 nursing home residents, and over 1000 individuals with developmental or mental health disabilities each day.

Caring for Elderly Parents - Recommendations and Resources for Sharing Care

Spiritual Life in Nursing Home (Part 1) By Peg Nixdorf

In the preamble to the constitution of the World Health Organization, health is defined as …………” a state of complete physical, mental, and social well-being and not merely the absence of disease and infirmity.” The definition emphasizes that a person is more than just an individual free from sickness. It identifies 3 aspects of wellness – body, mind and spirit – which can be changed by behavior or style of living. Every individual consciously or unconsciously demonstrates behavior which affects their sense of well being.

Nurses and other members of the healthcare team are well able to competently take care of patients’ physiological and psychosocial needs. However, spiritual healing has been often ignored or only partially undertaken, especially in the area of geriatric patient care. To provide total or holistic health care to residents & their families, we must think about the 3 major areas of body, mind and spirit.

Spiritual care is a very important part of the nursing process for the elderly. What is “spiritual care”? It involves meeting those needs of the resident or patient that transcend but at the same time intervene for their physiological and psychosocial needs. The spiritual aspect of the person involves finding deeper meaning in everything, including life, sickness, and even death. Such understanding is essential for the overall well – being of the patient or resident.

I am the Director of Pastoral Care at a Nursing and Rehab Center. I will be there 13 years this January. One of the myths about Nursing Homes is that you go there to die. Not so as our 450 seniors, average ages from 80 to 105 are fully alive and actively participating in various spiritual programs. Good liturgy and worship is very important to them.

When they first are admitted our chaplains do a first visit to assess the spiritual needs of that person and follow up with many pastoral care visits thereafter to provide them with support and encouragement. There are daily spiritual activities such as Mass and Protestant services. There is a Chapel on the premises that persons of all faiths can visit whenever they desire to. Services in the Chapel consist of praying the Divine Mercy on Mondays, the Novena to the Immaculate Conception on Tuesdays, the Rosary on Wednesdays, Protestant Service and Fellowship on Thursday and also there is Choir Practice on Thursday. We have an active choir called the “Heavenly Voices” that sings at Mass on Sunday. There are 5 active Prayer Groups, one of them on our Alzheimer’s community. The first group began in 2003 with 4 residents and has grown today to five groups with 15 to 25 members in each group. They were named by our residents and are called the “Healing Circles”. They meet weekly on Tuesdays, Wednesdays and Saturdays to pray and reflect on the Scriptures. The scriptures are proclaimed by the resident lectors. The majority of them are proclaiming the Word from their wheelchairs. The “Healing Circles” can be led by a Chaplain, Pastoral Care Staff, Recreation Therapists or a trained Volunteer or Resident and call upon God’s support giving praise and thanksgiving for the blessings and challenges of the week. They pray for one another, their families and for the world but more importantly form lasting friendships because they have bonded together sharing their worries and concerns. These small Christian communities believe that they are participating in the larger church’s call to mission and it’s also helping them to extend their spiritual journey to God. The Prayer Groups help our seniors to realize they are a vital part of the Church, as their prayers go out for the whole world in response to the gospel proclaimed and shared in the community. What is important, above all, is that the community regularly engages the question of how its life together concretely issues into building up the Body of Christ in the world.

Music is Key Tool to Reaching Inner Being

Walk through any senior center, nursing home, or assisted living facility and it will not be difficult to find someone sitting with their head down, emotionally if not physically isolated, with no meaningful verbal communication and seemingly "not there". This is what all of us fear most about aging-- becoming irrelevant and unreachable. Music offers an alternative to this scenario. The attached video offers a powerful demonstration of the impact appropriately selected music can have on the ability to communicate with those who seemingly are unable to be communicated with. Anyone responsible for care of the elderly should review this video and consider how the concept can be incorporated into their practice.

CHS Cross Continuum Pediatric Ventilator Program Under Development

Each year, hundreds of children on Long Island suffer an illness or injury that requires them to be placed on mechanical ventilation to help them breathe. Many of these children are successfully weaned from these devices while in the hospital. A number of them cannot be weaned, and require continued ventilator care after their acute hospitalization. What makes this even more tragic is the fact that before now, there is no coordinated program to provide services to these children on Long Island. For this reason, these children must often be placed in programs off Long Island, or even out of state. This places a significant burden on the parents and siblings, as well as the patient because of separation. Parents are often forced to quit their jobs due to the burdens of travel to and from the facilities providing care, and a financial burden is added to their plight as well the physical and emotional challenges.

Last year, Catholic Health Services of Long Island (CHS) received a $3.2 Million HEAL grant from the New York State Department of Health to develop a Cross-Continuum Program to provide care for these ventilator dependent children. The goal of this program is to support the child and their family in the best setting for their current situation, rather than focus on meeting their needs in one particular program. CHS is uniquely qualified to provide this cross-continuum support because of the various specialty programs it provides. St. Charles Hospital provides acute rehabilitation services to help the child transition from the acute care hospital, and prepares them and their families with the support and skills they need for extended ventilator care. The goal of care at St. Charles Hospital is to strengthen the child and prepare for discharge to home after several months of care. Catholic Home Care moves in with support in the home with their specialized pediatric services. If the child cannot be safely maintained at home, then they will be cared for in a special unit being developed at Our Lady of Consolation Nursing and Rehabilitative Care Center. This unit will also be available to provide respite care for a couple of days to a couple of weeks when families need a break from providing care in the home.

Once these programs are developed and fully implemented, there will be for the first time a coordinated program for the on-going care of ventilator dependent children on Long Island. The necessary approvals for construction and ongoing funding of the units at St. Charles Hospital and Our Lady of Consolation Nursing and Rehabilitative Care Center are in progress. Watch for updates and more information in coming months.

Making the Decision for Hospice Care

This episode of Passages deals with End of Life Issues.  It highlights the impact hospice care has had on a patient and includes a discussion of a panel of experts on how to help families make difficult choices regarding care for persons with advanced illness.

Chapter 5: Living life fully- hospice care

The heading of this chapter may at first seem strange. “Living life fully” is not a phrase that the average person calls to mind when thinking about hospice care. Typically, hospice is thought of as a place to die. In reality, this couldn’t be further from the truth. In fact, it is inaccurate on two fronts.

First, hospice is not a place. It is a philosophy and program of care. The majority of hospice care is provided in the person’s home. That home may be in a traditional house or apartment, or it may be in a residence such as an assisted living facility or nursing home. Hospice patients may also be treated in an in-patient setting when they have severe symptoms that need aggressive medical and nursing management, or if they caregivers need a respite, or break, for a few days. That in-patient setting may be freestanding, or part of a hospital or nursing home.

Second, the focus of hospice is not on helping someone die. It is about helping a person live to their fullest, even when they are in the end stage of an advanced illness. This means very aggressive approaches to controlling their symptoms so that they can enjoy the company of family and friends and have meaningful conversations and activities with them. There is lots of support of a variety of professionals, para-professionals, and volunteers. The team addresses the physical, emotional, and spiritual needs of both the patient and their caregivers. These interventions may include life review, facilitating conversations with family members, helping the patient engage in a long desired activity or unfinished business, etc. The goal of care is to reduce symptoms of pain or discomfort, while at the same time helping the patient to remain engaged and interactive to the greatest degree possible.

The support of the caregivers often makes the difference between a patient being able to remain in the comfort or familiarity of their home or not. I never ceased to be amazed at the demonstrations of love and care that I see family members and friends show to the hospice patient. The hospice team supplies these caregivers with the knowledge and support that makes this possible. And that support continues long after the patient dies, as hospice continues to meet with caregivers and family for bereavement support. A period of individual counseling is provided after the death of a patient to family and friends, and support groups and memorial services are provided by hospice throughout the year. For children who are dying, or for children of patients who are dying, hospice care-givers help them through play therapy and other age appropriate ways to process their thoughts and feelings.

The decision for hospice care is often a difficult one for families, caregivers, and even doctors. It is often less difficult for the patient themselves. Why is this? People are often afraid to suggest hospice as an option because they think that they are telling the patient that there is no longer any hope and that they are going to die. Physicians are often afraid to discuss the topic because they may feel that it represents a failure on their part, or that it means that they must end their relationship with the patient. From my experience, these fears are often more real to those caring for the patient then they are for the patient themselves. Most patients in the end stage of an advanced illness know the reality of their situation. In having the conversation about hospice, we are not calling their attention to their hopelessness or dying. We are acknowledging that we understand it too, and that we want to support them, be with them, and give them what they need to enjoy what time is left.

Even when a patient is beyond alertness or ability to comprehend these critical conversations about hospice, caregivers and family benefit from coming together with a mutual understanding of the situation and how they can best come together to meet not only the patient’s needs, but each other’s needs as well.

When is a patient appropriate for hospice care? The reimbursement criteria for hospice are that the patient have a serious, life threatening illness with a life expectancy of six months or less, and for which additional aggressive treatment is futile. It is important to understand that this does not mean that the patient must die within six months. It just means that it seems likely to be the case. If a hospice patient lives longer than the six months, they can be re-certified for another period, or a determination may be made that they have improved and are no longer hospice eligible.

There are four different levels of hospice care. The routine level covers services at home, including medical and nursing visits, physical therapy if needed, social work and pastoral care too. Medications related to the primary illness and symptom control are provided, as are medical equipment and supplies. A home health aide is provided to supplement the care given by family and friends. If caregivers need a break from their daily duties to re-charge themselves or to meet the needs of another family member, the second level, respite care is provided. The patient is moved to an in-patient setting for these days and receives care from the hospice team. When the caregivers are ready to resume their duties, the patient is returned home. Sometimes the care needs intensify during an acute episode, or in the very final stages of decline. During this time, the hospice team is able to provide aide and nursing care for extended hours in the home. This is called continuous care. Finally, there may be needs for symptom control and clinical management that exceed what can be reasonably provided in the home. In this case the patient is provided in-patient level of care by hospice professionals around the clock in a freestanding hospice unit, or in a hospital unit or scattered bed.

In each of these levels of care, the patient’s primary physician can remain the attending physician. He or she is supported by the medical staff of the hospice, who are trained and experienced in controlling pain, nausea, anxiety, and other symptoms that the patient may be experiencing. In some cases, the primary physician elects to turn the management of the patient completely over to the hospice medical team, but this is not required.

Hospice offers a wonderful program to provide comfort, support, and purposeful living in the final stages of illness. The biggest frustration of hospice workers is that often the referral to their program is made too late and they have such little time to accomplish so much with the patient. If hospice care is considered earlier so that patients are on the program for weeks or months, rather than days, both the patient and their loved ones have much to gain. In fact, for some illnesses research has shown that patients live longer on hospice care--and more comfortably-- than they do when receiving aggressive curative treatment that is futile. If you are not sure if hospice is right for you or a loved one, don’t hesitate to call a hospice provider and discuss your situation. They won’t push you to make a decision, and will give you the information you need to decide when the time may be right.

Chapter 4: Care after a Hospitalization

Arranging care for a parent or loved one after a hospitalization can be a maze of options. You may be pressed by the hospital’s care management department to make arrangements quickly, as the day of discharge approaches. At the same time, you feel pressed to find the optimal care setting and to do so with the available financial resources.

Under Medicare or commercial insurance, a patient coming out of the hospital will only get intermittent home care for a few months.  That means a nurse will make home visits a couple of times a week to check and monitor symptoms, medications and progress. These visits may be more frequent if some sort of skilled service such as injection or dressing change is needed. Various rehabilitation therapists may set up an exercise program and also visit several times a week to work toward improved ambulation, transfers, and endurance.  For the months that the nurse or therapists come, the insurance will provide home health aide services about two hours at a time several days a week-- to support the plan with activities, exercise, and bathing. This coverage may not be enough for the patient to be maintained at home without additional private resources.

If the hospitalization was for an advanced illness and the patient meets hospice eligibility criteria, there is more generous aide coverage.  Depending on the patient’s needs, hospice generally will cover daily aide service for up to four hours a day.  What families usually do is arrange for this aide service for hospice and have them do the daily bath and health related care, and then privately hire another aide, or just a sitter (depending on what he needs) for the rest of the day.  Hospice also has volunteers who will come in and visit , but not regularly where you can count on it for coverage.  

If the patient is eligible for Medicaid, then he or she might be able to get additional aide service coverage, but this is getting more and more difficult to get approved.  State requirements for Medicaid vary, and it is best to consult with a hospital or home care social worker or an elder attorney to explore this option.  Medicaid would also give you the option of getting care in a nursing home covered if the patient deteriorates and requires that level of care.

If the patient has Medicare there is another option right after hospitalization. This option is to seek admission into a nursing home for skilled services under Medicare coverage.  That might only last a few weeks up to three months depending on needs and the requirement of skilled services, but it would gain you some time to pursue a more permanent option at home.  It also gives the social workers at the nursing home time to work with you on a Medicaid application for continued care in the nursing home after Medicare runs out, or for extra services at home when the patient leaves the nursing home.  If you want to try this option and the patient has an advanced illness, don’t go on hospice care yet as they wont pay for nursing home care in most cases (Medicare will only allow a patient to be on one Medicare program at a time-- skilled Medicare nursing home placement, or hospice, but not both).  

Making post discharge arrangements is a challenge. The options discussed here may vary depending upon specific insurance coverage, state programs, and availability of services in your community. Most home care programs need to be supplemented by the time of family and friends, and perhaps even privately paid for care. Typically, there is not a one-stop option. You will need to build a quilt of programs, people, and resources to meet your loved ones needs. The care manager or social worker in the hospital can be an important resource. They are experienced with what programs are available in your community that meet the patient’s needs, and they also typically know the coverage limitations of the various insurance plans and government programs.

Passages - Home Care

About ContinuingCareInSite-- a blog about transitions in later life for those who care about them

As an adult there is probably no greater challenge than being stuck in the middle. On the one hand, as parents we are dealing with our children as they themselves are advancing into adulthood. They are beginning their careers, and soon their own families. On the other hand, we are dealing with our own parents as they advance in years with a natural decline in physical health, and perhaps even their cognition. In some cases, that natural, gradual decline from aging may be accelerated by an illness or injury. The mechanics of dealing with these issues is complicated by our evolving roles, and all of the emotions involved.

I will leave a discussion on the challenge of helping our children advance into adulthood to those more qualified! On my blog, I hope to provide you with some information and insights from both my professional experience as a nurse and health care executive, and my personal experience with family and friends. Of course, no two people or families are alike. This information is general and needs to be individualized to your own situation. I cannot stress enough that the family member who is the focus of this planning needs to be respected and included in the decision making process to the degree they are competent and able.

If you have questions or reflections on what I write, please feel free to send them to me. Based on feedback I receive, I often make additions or changes to my posts to benefit others who may have the same questions. I hope this information is helpful to you as you navigate these challenging waters.

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.