THE CONTINUUM OF CAREGIVING:

THE VARIOUS LEVELS OF ASSISTANCE

For most adults, Independence Day is every day. We are able to take care of ourselves in our own homes without requiring help from anyone. We can get out of bed, shower, use the bathroom, get dressed, prepare and eat meals, and take care of family, professional, household, social and personal obligations.

Sometimes, however, we all need a little help. Perhaps it is a case of the flu, a broken limb, recovery from surgery or an accident, or getting through dark days due to loss of a loved one, a job loss, or other personal struggles. In most of these cases, we manage. We get a little help from our families, spouses, friends and/or neighbors, and we move on. We return to our lives as we knew them, and life does indeed go on.

Sometimes, though, it doesn’t. It is not possible to return to one’s life as it was. Life at home without assistance is no longer the norm. Sometimes, it becomes painfully clear that long-term help is necessary, and Independence Day every day is no longer a reality. Perhaps it is due to a stroke, a fall with a broken hip, dementia that has progressed to a point that it is no longer safe to live alone or other progressive diseases. At this point, decisions must be made.

In most situations, the person needing care is an elderly person, but there are times that young adults need care too. Accidents, injuries, illness and chronic disease are a few of the issues that can befall a person of any age, thus requiring care. As a person’s age increases, however, the chance that they will need help typically increases.

Knowing just how much help is necessary is the first major decision. For the vast majority of people, there’s no place like home. Remaining at home is the most comforting, comfortable, familiar and inexpensive option. Sometimes, this is possible—with help.

PLAN ONE: IN-HOME CARE

Family members are often the first line of defense with such a plan. If there is a spouse, perhaps he or she will be required to be at home more to meet the needs of the affected person, and to ensure their safety. Often, when there is physical or cognitive impairment—or both, falls increase due to poor judgment, weakness, unrealistic expectations of one’s abilities and/or poor balance. Ensuring safety in the kitchen is also an important consideration, as burns from cooking can result, or the risk of the stove or oven being left on increases with cognitive deficits. Similarly, some adults cannot determine if it is indeed safe and appropriate to give out personal and/or financial information over the phone, and this compromise can lead to them being taken advantage of.

Sometimes, other family members are enlisted to help. Adult children or siblings can provide care and support. In some cases, there are close family friends who volunteer to help as well.

If no family or friends are available, or if their time is limited, there is caregiving to be received through a paid caregiver, or to an agency who places caregivers. These caregivers can provide full-time, 24/7 care, or limited care depending upon the need involved. Some people only need help for grooming or meal preparation, others need more extensive care. Some agencies employ registered nurses or licensed practical nurses, as well as certified nurse aides for those who need less intensive care. Companion care is an option when there are no medical needs necessary; some people simply need to have someone else available in the event of an emergency, and to ensure safety with in the home, as well as providing companionship. Sometimes this is simply respite for the family member who is the primary caregiver when he/she has an appointment or needs to have an evening out.

Which brings up a very important issue: care for the caregiver. Often, the primary caregiver can become weary, depressed or simply in need of some personal time. Many caregivers, due to their loving nature, are not comfortable in asking for time for themselves, feeling guilty for asking for what seems to be something selfish when their loved one obviously needs so much care, and they do not appear to have needs. The needs of the caregiver should be kept in mind too, as their physical and mental health is necessary for effective and appropriate caregiving.

Often, other family members who are not providing care do not fully realize that the primary caregiver—their mother, father, sister, etc.—are shouldering a tremendous weight that may become too heavy at times. Since the others are not typically present to see the day-to-day struggles—as well as the joys—they fail to realize the toll it is taking on the caregiving family member. Also, the caregiver typically feels guilty if they ask for help, feeling that this may appear to be a complaint or a sign of weakness. In fact, it is often a sign of personal strength when a person—no matter what the situation is—can ask for help.

The job of caregiving may appear to be “easy” to the non-caregiving family member, as if it is simply keeping them company, instead of having to meet so many of their needs. This failure to realize the extent of the work involved can create frustration and even animosity at times, when the caregiver feels they are expected to provide all or most of the care, when other family members could indeed be providing some of the help—when they likely don’t realize the extent of the need, or the time, effort and dedication that is necessary to provide such care.

Open, honest communication can be difficult, but it is vital at times like this. An atmosphere of understanding and calmness helps for both parties to understand the perspectives of the other person.

PLAN TWO: ASSISTED LIVING

There are times when remaining in the home is not the best level of care. Sometimes, there are no family members available to care for the person in need. Perhaps they are a widow/widower, and the grown children live far away, or there were no children. Also, the task of caring for one’s home may become overwhelming when health declines. When most of the person’s and/or caregiver’s time and energy are focused on meeting the needs of the person, the home can suffer. Large houses with large yards need care, and these become too burdensome at times like this. Giving up one’s home can be an emotional ordeal, but some people feel it is very liberating to no longer have to worry about the upkeep.

Assisted living is a viable option when a person’s needs are not so great that they cannot meet some of them on their own, but they simply need someone there to help some of the time, or with specific needs such as medication administration. Most assisted living facilities offer cooked meals in a group dining room, with small kitchenettes in the apartments for the residents to prepare and/or cook light meals. Most facilities have 24/7 nursing care available, but some people may not need regular care. Instead, they may just need to have the availability, just in case. Some facilities schedule their rates according to how much care is necessary, depending upon number of meals to be served, and whether or not they need medication administration.

The social aspect of assisted living is invaluable. Many seniors become isolated in their homes when their spouse and friends have passed away, or if their children and/or grandchildren do not live close, and meeting people and/or attending social events becomes a difficult endeavor. The nature of assisted living facilities offers instant social opportunities, with many other residents present who have a lot in common with each other.

For the family, knowing their loved one is in a place where there is around-the-clock care available, and knowing that if they don’t show up for lunch, their friends and the nursing staff will come to check to see if all is well. This peace of mind is typically invaluable for the family. For those people who are hesitant to give up their homes for assisted care, most are pleasantly surprised to find that they enjoy the facility, the food and the friendship that is readily available.

Some facilities also offer independent living apartments, which do not offer the assistance, but they do offer the close proximity of neighbors who often become close to each other, and serve to look out for one another. Also, there are entire developments that house only adults over a certain age, thus creating a retirement community that offers the companionship and mutual likenesses among the residents. Many older adults who are ready to give up their large homes and yards and choose to move to such an apartment find it to be a positive experience, and feel less stress that home ownership and caring for the home can create. Also, after having made this move, it may become easier in the future to make another move to a higher level of care when it becomes necessary. Moving into such an independent living situation is typically easier than going into assisted living from their homes, as they transition into partial care is more gradual.

The vast majority of such facilities are set up on a private pay basis, with no Medicare or other insurance assistance available.

Within both the personal home and assisted living environments, there also exists the Home Health option for care. If a person is deemed by their doctor to be in need of nursing and/or physical, occupational or speech therapy care, AND cannot easily leave their home to receive such nursing or therapy care, they then can be covered by Medicare to receive home health services. Nurses and therapists visit the patient in their home, providing the necessary care and therapy in order to strengthen them to return them to their prior level of functioning, or as close as possible. This is typically covered by Medicare at 100% for the duration of care, which can range from weeks to months. These visits are typically for several hours a week, not full-time. If a person has chronic medical needs such as wound care or medication assistance, and can otherwise stay in their home or assisted facility, then home health is a viable option, allowing the patient to remain in a less restricted living environment.

PLAN THREE: NURSING HOME CARE

When the need for physical care and assistance exceeds what can be offered in assisted living, the long-term care facility may be the best option. This option is also the most appropriate when a person is recovering from a stroke or hip surgery, to name a few diagnoses, and needs intensive nursing care and likely physical, occupational and/or speech therapy. When a person has been living in their own home, and suffers an acute event such as a stroke or severe fracture and cannot immediately return to their home, then the long-term care facility is most appropriate. This care, when it is received immediately after release from an acute care hospital setting, is called skilled care, and is typically covered by Medicare A at 100% for the first 20 days, then at 80% by Medicare A for up to 100 days, but only if consistent and functional progress is shown by the patient with continued therapy and nursing care. After the patient no longer shows improvement at any point within that 100 day period, then Medicare A benefits can no longer be drawn upon, and the patient either is deemed strong enough to return home, or may continue to stay at the long-term care facility by privately paying, using their long-term care insurance benefits, or by applying for and receiving Medicaid benefits, if they are not already receiving them. The vast majority of long-term nursing home residents in the United States have their stay covered by Medicaid, which may require a lengthy application process, with a person’s assets taken into account in that process.

Understandably, many people don’t want to consider going to a nursing home after their hospital stay. It may feel as if they won’t be able to go home in the end, but many patients do stay only for brief periods. In the past decade, there have been many Medicare changes that made it nearly impossible for hospitals to keep these patients long-term when they are in need of intensive therapy in order to return home. The better option for Medicare reimbursement is for the patient to receive short-term therapy and nursing benefits within a skilled facility in order to complete their recovery to a point where they can return home. Some, however, do continue to need the continued nursing care that a facility offers, and do stay longer.

It is important to note that these levels of care are not always fixed; a person’s needs can change, and the care level necessary can change as well. Therefore, a person may spend several weeks or months in a skilled care facility with intensive therapy provided. They may then be strong enough to return home and resume their independent lifestyle. A person may need several months of home health nursing and physical therapy care within their own home after hospitalization for a stroke, but may also require family to spend more time helping and checking on them. When they become stronger after the nursing and therapy care, they are better able to take care of themselves, and may no longer require family care.

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Care for the caregiver is more than just a notion, more than a catchy phrase. Caregiving is hard work, and the caregiver needs to have their needs met as well. No caregiver should ever feel guilty or selfish for looking out for themselves, or for asking for more help.

Remember, it is a sign of strength to ask for help, both for the person who needs care, and for the caregiver too.