We now know that older people are most susceptible to COVID-19 disease. We are also hearing about large numbers of deaths from COVID-19 in "nursing homes." That is because the infection and mortality rate in such facilities is disproportionally high.
My wife and I were discussing this, how tragic and sad that so many have died in nursing homes apart from family and friends because of the pandemic.
I have several friends who are coordinating long-term care for elderly parents. One of them shared that his parents are in two different facilities, and one of them is moving his mother to a nursing home in another town to make room in her current one for COVID-19 patients.
He is very concerned. He loves his parents and wants to honor and serve them by following biblical commands (Ex. 20:12; 1 Tim 5:8). His family's situation is very challenging.
My wife raised some interesting questions: "Can they just do that? Can they move someone without the permission of a family member? Does the family member have any say in where they go?"
Many people don't fully understand the world of long-term care. It is diverse and complex. There are different kinds of care, a variety of programs, and federal, state, and local governments are involved. It can be hard to differentiate one type of care from another, which programs someone qualifies for, and who pays for what.
Making decisions about long-term care and figuring out how to fund it can also be difficult.
In this 4-part series, I will tackle this subject. The series may be helpful to those who will need to decide about aging parents, as well as those of us who are older and need to know our options and their financial implications.
In this, the first article, I will discuss long-term care in general. In the second, we'll get into the costs of care and potential funding sources. And in the third, I will tackle the thorny issue of whether you need long-term care insurance (LTCI).
What Is Long-Term Care?
Long-term care (LTC) refers to many services that provide personal care needs during a short or long period. Some help people live semi-independent, others assist with all everyday activities, and in the most extreme cases, provide 24-hour monitoring and nursing care.
LTC can be provided in different ways—by different people, in different places, depending on the person's needs. Most LTC is provided at home by family and friends. It can also be supplied in LTC facilities such as an assisted living center or long-term-care facility (nursing home).
Most LTC is focused on help with personal needs—everyday activities such as bathing, grooming, using the toilet, eating, and getting around. Those with a severe or chronic health condition or disability are most likely to require LTC. Others need it because of the effects of aging and the progressive weakness and frailty that it brings.
Types of Long Term Care
When people hear "long term care," they may think "nursing home." But there are several types of care that can be provided depending on the person's situation.
Home-based long-term care is as it sounds. These services help people stay at home (or the home of another) and live as independently as possible for as long as possible.
Most home-care services involve help with everyday activities and rarely include medical support (nursing) services. Paid caregivers of various kinds: nurses, aides, therapists, and friendly visitor/companions can provide them.
These services include help with meal preparation and household chores. Personal care includes help with bathing and dressing. Other home-care services involve the delivery of home-based, part-time medical services for a specific health condition. A physician typically orders them.
The most common is nursing care to help someone recover from surgery, an accident, or illness. Private insurance or Medicare (for those over age 65) pays for those services. But they can also be purchased without a physician's order. Agencies do not have to be approved by Medicare to provide these kinds of services.
Assisted living care
Assisted living care is like home-based care, but provides services in a managed residential facility. It provides an additional level of care while enabling the person to live semi-independently in a safe environment.
Many older people want to stay home and "age in place." But sometimes that is not the optimal solution. Their residence may not be suitable for "aging in place." (For example, a house with lots of stairs can be problematic.)
Assisted living facilities are more like residential communities than nursing homes. They are managed to feel more "homey" while providing the essential support services that older persons need. They offer very little in the form of medical support services; the focus is more on help with necessary day-to-day activities.
Nursing home care
Someone who can no longer remain at home because of the need for around-the-clock nursing care, and needs more intensive medical care beyond what is provided by an assisted-living care facilities, may need to be admitted to a nursing home (also known as a long-term care center or extended care facility).
Nursing homes provide services in a more institutional, hospital-like environment. They are staffed with health care professionals such as nurses, nurses' aides, dietitians, etc.
Those that don't provide the specialized medical services found in hospitals, the government does not require them to have a physician or registered nurse (RN) on-site 24-hours per day. (But they are usually available on an on-call or emergency basis.)
Some nursing homes provide both long-term care and skilled nursing, which enables them to admit patients who need a higher level of care (and the higher payments that Medicare offers under Part A.)
Facilities that provide skilled nursing services are staffed with a registered nurse 24 hours a day. They can care for more medically challenging and complex situations such as special feeding and IV arrangements.
Not all nursing homes (or assisted living facilities) accept Medicaid payments. Some are private-pay-only facilities. Others have both private and Medicaid-funded residents. In general, private-pay residents pay 20% to 30% more than Medicaid residents.
Facilities that accept Medicaid have to be licensed by the state and are subject to regular inspections to ensure that they meet federal standards.
Long-Term Care Planning
From a biblical perspective, I would say that long-term-care planning is part of the "stewardship of life," whether it is our life or the life of a loved one.
Whether we are planning for ourselves, a spouse, or a parent, following biblical principles will be of significant benefit. "Commit your work to the Lord, and your plans will be established" (Prov. 16:3).
Like so much of later-life planning, there is much uncertainty about the factors that will drive our LTC decisions. Some will never need it. Some will, but for a short time. Others may require it for a long time.
An unexpected accident, illness, or injury can change your situation suddenly and dramatically. Therefore, the best time to think about long-term care for yourself or your loved one is before it becomes an urgent need.
The most important questions that we have to answer are: "How would I get the care that I (or a loved one) may need if a debilitating illness, disability, or natural aging necessitated long-term care?" The second question is, "How will I pay for it?"
The answer to the first question depends on the extent of the need, available solutions, and their cost. This article is focused on the first two factors—the extent of the need and their solutions—the second and third in the series will go into the cost considerations and funding options.
The extent of the need
For those who are relatively self-sufficient, and who need to keep costs low, aging-in-place for as long as possible may be the best solution. Many people want to stay in their own homes for as long as possible, but a determination has to be made about whether or not their current residence is suitable for that.
After my mother passed away, my father lived alone in the family home for several years. He could have stayed longer but for his failing eyesight. For the last few years of his life, he lived with my family in a room that we set up especially for him. My father-in-law was in a similar situation but was struggling to keep up with a house and yard. His first transition was into an independent living community.
Some who need to move consider independent living communities. These may be apartments or patio-style homes, with living rooms, bathrooms, and kitchens that allow them to continue to lead active and independent lifestyles without all the hassles of homeownership. Some such communities provide lawn maintenance, housekeeping laundry, and meal preparation in addition to organized community activities.
Those who desire and can stay at home, who need additional assistance with simple tasks and homemaking, the home-care services described above can be used to help support them if they can no longer adequately care for themselves without having to move.
A move to an assisted living environment is necessitated when the person can no longer live on their own, for physical for cognitive reasons, or both. If they go to an assisted living facility, there are private apartments, but semi-private rooms or private studios are more affordable.
The need for an assisted living environment may be indicated when the person is unable to perform some or most daily living activities. The most common are problems with food preparation and eating, medication, mobility, driving, personal hygiene, and housekeeping. There may also be a chronic health problem or general weakness or showing signs of memory loss.
Many assisted living communities also have memory care units. These are for residents with advanced memory problems, such as Alzheimer's or dementia, which require extensive supervision and care.
The transition from assisted living to a skilled nursing facility may be needed when the person needs health-related monitoring and services beyond what is provided with assisted living. Some people need nursing home care for a limited time, perhaps to recover from an accident or surgery. Others must live there indefinitely.
The decision to move
The decision to leave home and move to an assisted living or long-term care facility a difficult one. Sometimes, a sudden illness or injury necessitates it. But most of the time, the person and their family have time to carefully plan for such a transition.
Hopefully, some planning has been done before it is clear that a person needs to move from their primary residence to some kind of alternative care arrangement.
Instead of moving to an assisted-living facility, one option is for the person to move in with a family member or friend who can provide more care than was available using traditional home care services.
Moving in with a friend or family member very good solution in some cases, but it means that whoever is caring for them must have the time and resources to do so, and also a residence suitable for aging in place. Some families make modifications, such as a wheelchair ramp or a staircase elevator, to accommodate an aging parent.
Whether the decision is to move an aging parent into a family home or an assisted living facility, there can be guilt pangs associated with the decision. We all feel love and a strong sense of responsibility for our parents and want the best for them.
Loving them may mean bringing them to live with us, but it can also mean working with them to find the optimal alternative living and care arrangement.
Some will want to maintain a semi-independent and private living arrangement for as long as possible. They will balk at moving into any kind of elder-care facility. Others will prefer living with a family member or an assisted living facility.
Regardless of why you have to make such a decision, or which decision you make, you will not come to a decision lightly. This is a huge life change for someone to go through and they will require time to adjust and adapt.
The decision process
As important as it is, very few families plan for long-term care. But the more planning and discussion happens early on, the easier the decisions are to make when the time comes.
Here are some basic principles that families can follow to make the process as painless as possible:
- Give elderly parents every opportunity to continue to make their own decisions. Older people may or may not be able to actively participate in the decision process. There may be a natural resistance to change, but the goal is for them to acknowledge that change is needed and to understand and agree on a strategy.
- Recognize that significant changes may not be necessary, at least not at first. Sometimes smaller modifications like changes to their current residence, a visiting home-care aide, or a change in how medication is administered, may be all that is needed for the time being.
- If a family member believes a change in the level of care is necessary, involve other family members, including the parent(s). The family should consider all factors and perspectives and work together to come up with an agreed-upon solution. Individual family dynamics will play out, often driven by the geographical proximity of family members and their situations.
- Get professional advice if you need it. Solicit input from doctors and professional caregivers who are already involved. The goal is to make sure all facts and opinions are presented and thoroughly discussed.
- Research the various types of care available. If assisted living is indicated, find out what kinds of facilities are in the area—ditto for nursing homes. If there are none in your area, you may have to look at a different city.
- Be aware of the person(s)' feeling. Feelings of a loss of independence can be overwhelming. Be sensitive to what they are feeling, especially the reversal of roles for parent and child.
- You must consider the cost. Long term care is expensive. Therefore, the cost can be a hindrance to being able to purchase specific solutions. As part of the decision process, you will need to research prices and decide on a funding strategy.
It's not easy
As you can see, there are lots of options. A thorough and thoughtful decision process is needed to come up with the best solution, including how to fund it. Neither of these will be easy, especially since cost is such a major factor. The next two articles will focus on this all-important cost component of the decision.