"Mom's memory is getting worse; isn't it dangerous for her to live alone?"
"With Dad's broken hip, he can't get around very well. How is he going to take care of himself?"
"The doctor says that I should put my brother in a nursing home because of his paralysis. But he is only 32 and he doesn't want to be with strangers. Can I manage taking care of him at home?"
These are increasingly familiar questions. Ordinary people with families, jobs, credit bills, busy lives are faced with questions like these every day. They wonder how they can protect their loved ones and give them the assistance they need while managing their own schedules, homes and finances.
There is no one answer that fits every situation. Families are wise to deliberate carefully when deciding how to help their loved ones. For adults who must assume the authority to make decisions for elderly parents, the role reversal can be particularly uncomfortable and difficult for both parties. While everyone's situation is unique, there are common and practical approaches that others have used successfully to ensure that their loved ones receive the care they need. The ten most common choices are examined here for their potentially positive and negative impacts on families.
1. Skilled Nursing or Full-Care Facility / Nursing Home / Convalescent Home
These full-care facilities, regardless of what they choose to call themselves, provide 24-hour care to their residents. They typically have at least one registered nurse on staff and a handful of certified nursing assistants and unskilled labor. These facilities oversee the administration of doctor-prescribed medications and provide assistance with the necessities of daily living that include meals, bathing, dressing, and some additional needs. They act as contact points for physicians, family members, insurance companies and others.
Pros: Facilities must operate under federal guidelines to qualify for Medicare and Medicaid billing, so certain standards of care must be maintained to stay in operation. There is always someone on duty since they are 24-hour, full-care facilities and they normally have both a physician and registered nurse on staff and available during normal working hours. Some facilities have well-planned activities on a regular basis for residents to enjoy.
Cons: Even if the facility is fully staffed, there is little time for one-on-one interaction between the residents and their caregivers. For people with special needs (such as dementia, mobility issues or difficulties communicating), the limited access to staff members may be frustrating and detrimental, if not dangerous. Residents of these full-care facilities often suffer from loneliness, lack of stimulation, and depression.
2. Assisted Living Facility
These facilities offer apartment-style living to those who do not require assistance with the routine activities of daily life, but with amenities that may include: secured access, daily means in a common area, activity programs, management staff on premises, transportation, and personal services in or nearby the facility.
Pros: Seniors enjoy the conveniences and camaraderie that is often present in these facilities. They often build fulfilling relationships with fellow residents and enjoy the social aspect of assisted living. They maintain their independence and privacy, but have access to people who are close enough to help when needed, or to just keep an eye on them.
Cons: Medical supervision and services are not provided, so this is not a practical solution for those with certain challenges or special needs. It can also be expensive for those living on a restricted budget. The social nature of the facilities may be lost on people who are introverted and would prefer more quiet and less activity.
3. Professional Caregiver Assistance at Home
Many people would rather have the security and intimacy of remaining in their own home, even if they are unable to physically or mentally manage all that entails. Some caregivers are self-employed; but most professional caregivers work for agencies that qualify their staff and are able to directly bill insurance companies for a portion of their fees. There are also caregiving/sitter agencies that operate on a cash basis, which means they do not bill insurers so people pay out-of-pocket for their care (the hourly rates are usually less expensive than the agencies that bill insurers). Both kinds of agencies employ Certified Nursing Assistants (CNAs); but agencies who are qualified to bill insurers must be licensed through an MD or RN and submit proof of the legitimacy of their operating procedures and service standards. The caregivers that provide at-home services usually assist with mobility (getting in and out of beds, wheelchairs, autos, etc.), bathing, light housekeeping, meal preparation, medication tracking and access, and sometimes shopping and transportation.
Pros: This is often an advantageous solution for the emotional well being of loved ones. People are more comfortable at home and they retain a greater sense of control and independence. People also have a choice of who provides care to them and when, rejecting caregivers who are unsuitable and trying alternate caregivers until they find those who meet their needs and expectations. Family members also benefit from the chance to build good relationships with the caregivers who, in turn, keep them well informed about the day-to-day condition of their loved ones.
Cons: There is an out-of-pocket expense to be considered, even with agencies that bill Medicare and other insurers for a portion of their fees. In addition, direct supervision of the caregivers should not be delegated to the people requiring care, so more time and effort is required of family or friends. Family members must be attentive enough to witness the interaction with caregivers and ensure the quality of their care. It also can be a difficult adjustment for people in the beginning, allowing strangers full access to their homes and receiving assistance that is normally experienced in hospitals.
4. Full-Time Care in Your Home
There are certain benefits to bringing a loved one who needs supervision and assistance home to live with you. Though it often creates a disruption to the household initially, with the right kind of planning, information and effort, this solution can bring very positive results. It will demand changes and alterations in one's lifestyle. These changes and other potential changes over time should be carefully considered before making the commitment to providing dedicated care in your own home. For those of you who do rise to the challenge and decide to provide full-time care, allow me to advise you to gather as much support as possible from other family members and friends. Caregivers need respite; it is vital to their own health. Caregivers are usually compassionate people who are naturally generous and compromising; but these qualities will sometimes put them in a position to be undervalued and neglected. Some people jeopardize their own health, goals, and peace of mind by taking on themselves all of the demands of caregiving. Ask for help...receive help...insist on help; caregiving will be a much better experience if you do.
Pros: People who need assistance can find great comfort in being welcomed to their loved one's home. They benefit from receiving care from an intimate source. Changing one's lifestyle and sharing one's home with someone communicates love and commitment; this can help to preserve a loved one's dignity and sense of self-worth. Also, caring for a loved one at home allows for greater control over the quality of care he/she receives, and avoids the worry and sadness associated with surrendering a loved one to strangers in a facility. Finally, providing loving care to someone strengthens emotional bonds, motivates personal growth and character-building, and invites one to treasure the time spent with a loved one while they are alive and available. It seems that the efforts one makes for a loved one are mostly external; but the benefits are mostly internal.
Cons: It requires immense dedication to be a full-time caregiver to someone, even if the person does not need constant attention. There are many challenges to providing full-time care in one's own home; these may be physical, emotional, financial, spatial or scheduling difficulties. In regards to loved ones with specific conditions that require medical services, such as tracheotomy care or injections, most people initially lack the medical knowledge and expertise required. However, most people find that, if they apply themselves, they can learn to do everything necessary to care for their loved ones at home. Sometimes, others in the household will reject or resent the additional pressures of caring for loved ones and this can cause painful conflicts among family members. For those receiving care, avoid the feeling of being a burden to one's family and giving up some control over one's own life are often the greatest hurdles. For those providing care, the constraint on one's own life pursuits and respite time as well as managing additional financial concerns are usually the biggest obstacles to overcome.
5. Part-Time Care
Some people opt to be caregivers for their loved ones, rather than pay for agency assistance. There are many options for proving part-time care. People may travel to their loved one's home to tend to his or her needs during the day and then leave them unattended at night. They may reverse that schedule, be absent during the day and stay in their loved one's home at night. They may combine their own efforts with a paid caregiver so all 24 hours in a day are covered. They may bring their loved ones home with them for 12 hours and then return them to their own homes for the remaining hours. There are many ways to approach part-time care. The essence of this is that, regardless of the schedule and the nature of the caregiving, someone is taking responsibility and is actively involved in their loved one's care. This can be an excellent solution for people who require little assistance, but need regular interaction with loved ones to remain happy and fully functional.
Pros: This type of care combines the benefits of remaining independently at home with that of receiving caregiving from family members in their homes. People who need assistance are encouraged by the commitment that a loved one demonstrates in providing that assistance. Yet, they retain a comforting sense of privacy and autonomy in being able to remain in their own home. There are usually compromises that must be made by both the caregivers and the loved ones needing assistance. If these compromises are made and everyone works together with the same goals in mind, this can be a life-affirming and rewarding solution.
Cons: When events occur that affect the caregiving routines, this can be quite disruptive to the people requiring care as well as the caregiver. Caregiving for a loved one, whether part-time or full-time, requires dedication and compromise. The demands - scheduling, financial, physical, emotion - can be overwhelming at times. There is also the possibility that other family members, friends or even business associates will not understand the nature of that commitment. They also may be unwilling to share the caregiver's time, attention and resources, causing the caregiver to feel divided and unappreciated. Part-time caregivers will need to enact the same requests for help and consideration that full-time caregivers must, in order to preserve their own health and happiness.
6. Combination: Senior Centers During the Day and Caregiver at Night
One possible solution for people who are highly functional and require minimal care but desire to have assistance and companionship on hand, is to combine the presence of a caregiver (whether professional or a family member who stays home with them at night) with the services of a Senior Center during the day. Some centers provide transportation to and from home and some do not. There are also Adult Day and Rehabilitation Centers that will care for disabled adults who are not seniors during daylight hours
Pros: This is beneficial to highly functional people that do not require medical treatments throughout the day and who desire regular companionship. This combines the security and privacy of remaining at home with the assurance of someone on hand with the social aspect of being in a facility during the day with others who have similar interests and backgrounds and situations. The Day Centers often have entertaining activities and programs for people to enjoy and also offer at least one communal meal. Family members can be assured that their loved ones are not alone and that allows them to maintain their own routines with less cause for concern.
Cons: There is an out-of-pocket expense for the Day Centers, though it is usually quite modest considering that it is all-day care. If a professional caregiver is employed for an evening shift, there is usually an added expense for that even if Medicare or another insurer partially pays the fee. Depending on the facility and the person's proximity to it, transportation to and from every day may be an issue. There is a possibility that someone is in need of greater assistance than is provided through the Day Centers, so being left in their care could be detrimental. There may also be a risk that a loved one feels that family members are avoiding inconvenience by assigning their care to facilities and paid caregivers.
7. Hospice
Hospices are designed to care for terminally ill patients who need medical supervision as well as a compassionate respect for the process that they are enduring. Hospices typically have a more personal and intimate environment than other full-care medical facilities. They are focused on palliative care, which means they do whatever they can to alleviate suffering and reduce the severity of disease symptoms.
Pros: Hospices are usually very sensitive to the special needs of terminally ill patients. They endeavor to provide a warmer and more endearing environment to its residents than is offered by other nursing facilities. They are also accommodating to family members who are struggling with the pain of witnessing their loved ones' suffering. Care is full-time and is often paid through Medicare and other insurers, particularly for those who have long-term care insurance. But the most significant benefit is the focus on alleviating the suffering of terminally ill patients; this is often the most difficult element of all to handle.
Cons: Dying is an extremely intimate process, especially when there is a long period of deterioration. Being in a facility can feel like an invasion of privacy and further deprive someone of their feeling of control and independence. It can be difficult also to be surrounded by others who are terminal which makes for a grief stricken environment.
8. Siblings Take Turns
Some families may decide to collaborate and devise a structured way to share responsibilities without overburdening any one individual. This works especially well in close-knit families with at least two siblings. There are many ways to manage this shared caregiving. Siblings may decide to take turns living with the loved one, or bringing the loved one home to live with them, and assuming full-time caregiving responsibilities while the other siblings have minimal involvement in day-to-day activities. If there are four siblings, they could divide the year into quarters and each take the loved one for a quarter. Another family may divide the schedule on a weekly basis or have a routine mapped out that involves all of them in caregiving on a daily basis.
Pros: This offers all the advantages of being cared for by loving family members in a home environment along with protecting those in the caregiving role from being overburdened and alone. There is less potential for difficult gaps in caregiving with more than one person dedicated to the effort. If respect and compassionate collaboration is present in this arrangement, the result may be even stronger bonds among family members, particularly with the loved one requiring care. When the demands of caregiving are shared, they are a lighter load to bear.
Cons: There is the potential for discord among family members who disagree about scheduling, financial or other considerations. Also, there may be push back from some family members who feel that they are either shouldering too much of the responsibility, or not being given enough. Nonetheless, it is likely that the pros of this arrangement far outweigh the cons.
9. On Again/Off Again
This implies situational caregiving that is based on necessity. Family members may volunteer to step in and assist their loved ones only when invited or when their loved ones are obviously struggling to maintain the quality of their lives. Similarly, outside professional assistance may be acquired only as the situation demands.
Pros: If loved ones are in relatively good health and require minimal assistance and supervision, this may be the choice that ensures the most independence and requires the least amount of lifestyle changes. Loved ones are reassured that, when they need help, it is available at their discretion. Family members are not burdened by excessive demands and are able to focus on their routine lives between intervals of caregiving.
Cons: Providing care on a non-routine basis may not be enough for loved ones, even though they may resist expressing that to their family. Sometimes their needs are not met with this method, but it may not be revealed until a pressing situation arises. In addition, when loved ones are no longer able to direct their care but they are not aware of this development, there may be conflict and resentment when family members try to convince their loved ones that the "on again/off again" method is no longer viable.
10. Do Nothing
This last solution just might be a non-solution. Doing nothing may be a wise course of action temporarily; but, most likely, it is not a long-term answer. It may be motivated by a reluctance to face the reality of a changing situation; it may be motivated by confusion about how to create a forward-thinking and functional care plan; it may be motivated by a lack of concern or commitment. Whatever the motivating factor, choosing to take no action concerning the care of a loved one in need is like abandonment. It is not a sensible choice.
Pros: The only positive impact of taking no action, or even crafting a plan of action, is that it preserves the way of life for family members who are not committed to their loved one's care. There is no apparent positive impact on loved ones in need, unless it motivates them to take action themselves that ensures their well being.
Cons: There are many obvious negative impacts to "doing nothing" about the needs of a loved one. First, this may cause a detrimental condition to escalate and the loved one may experience damage that would have been prevented had action been taken. Then, the message that is communicated to loved ones by family members who take no action is that the family also takes no interest in the welfare of these individuals. Whether or not this is true, choosing to do nothing to help a loved one in need cannot be classified as anything but neglect. This is potentially very painful for the loved one in need. In addition, taking no action solves nothing; it simply delays the inevitable. At some point, family members who are involved in their loved ones lives will be required to make some decisions regarding their care. Sometimes the delay will be the determining factor of whether or not a loved one survives. For anyone who values a relationship with a loved one, the choice to do nothing to address that person's care is a foolish and naive approach.
Lorrie Tabar is a freelance writer and managing member of a marketing company for small healthcare businesses, Fire and Focus, L.L.C. Lorrie is also an experienced caregiver who, with her husband, provided care to a bedridden family member for eight years in their home. Lorrie lives in Powder Springs, Georgia and supports a variety of organizations that support the needs of seniors and the rights of persons with disabilities.
