Tips on Selecting a Long-term Care Facility with Your Aging Parent

What Is Long-Term Care?

Along with being a caregiver come the decisions about the kind of care, the site of care, and how much you want to manage the care, if you can, by yourself. That is a lot to consider.

There are many ways to structure care of a patient needing long-term care services. The options are daunting, and piecing them together takes time. Also, what you put together now may not be appropriate in six months, or six months after that.

Long-term care is complicated. There are many ways to put together care.

The National Institute on Aging, at the National Institutes for Health (NIH), defines long-term care this way:

Long-term care involves a variety of services designed to meet a person’s health or personal care needs during a short or long period of time. These services help people live as independently and safely as possible when they can no longer perform every- day activities on their own.

Long-term care is provided in different places by different caregivers, depending on a person’s needs. Most long-term care is provided at home by unpaid family members and friends. It can also be given in a facility such as a nursing home or in the community—for example, in an adult day care center.

The most common type of long-term care is personal care—help with everyday activities, also called “activities of daily living,” or ADLs. These activities include bathing, dressing, grooming, using the toilet, eating, and moving around—for example, getting out of bed and into a chair.

Long-term care also includes community services such as meals, adult day care, and transportation services. These services may be provided free or for a fee.

People often need long-term care when they have a serious, ongoing health condition or disability. The need for long-term care can arise suddenly, such as after a heart attack or stroke. Most often, however, it develops gradually, as people get older and frailer or as an illness or disability gets worse.

Home-based long-term care services are fairly common. Home-based long-term care includes health, personal, and support services to help people stay at home and live as independently as possible. Most long-term care is provided either in the home of the person receiving services or at a family member’s home. In-home services may be short term—for someone who is recovering from an operation, for example—or long term, for people who need ongoing help.

Most home-based services involve personal care, such as help with bathing, dressing, and taking medications, and supervision to make sure a person is safe. Unpaid family members, partners, friends, and neighbors provide most of this type of care.

Is It Time for a Move to a Long-Term Care Facility?

How do you know when it’s time to think of a care setting other than home? One of the hardest things to recognize when you are the family caregiver is that you cannot provide care at home anymore. When is the right time to move someone from being cared for at home to another setting?

That question can set off a cascade of questions that can feel intimidating. Sometimes we make promises to the patient that of course they can stay home forever. Then something happens: their healthcare condition worsens, the caregiver needs more and more support, etc. Even if you didn’t make a promise, most people do not want to leave their home. One of the saddest questions my mother used to ask me, even in the deep stages of her dementia, was, “When will you take me home?”

However, sometimes moving to independent living or assisted living—or, in further-advanced cases, a nursing home— is better, both for the patient, medically, and for the caregiver.

What are the signs that tell you to consider a move to assisted living or a nursing home?

1. The patient has become aggressive

2. Caregiver stress—a whole host of symptoms

3. Escalating care needs

4. The patient’s environment is no longer safe for the patient or for the caregiver

5. Sundowning

6. Wandering

Some questions to ask yourself, as the caregiver:

• Have you hurt your back or fallen while trying to lift or move your loved one?

• Has the patient’s dementia progressed to the point where they have tried to hurt you, or exhibited other challenging behaviors, including paranoia or anger?

• Has the patient wandered outside and become lost?

• Are you, the caregiver, unable to fulfill your other responsibilities?

• Are you starting to feel burned out? Have you lost your temper at tense times—for example, when your loved one was resisting getting dressed or was following you everywhere?

• Is your health beginning to show signs of stress—like higher blood pressure, anxiety, depression, headaches, or other physical symptoms?

It is hard for caregivers to start the conversation with others about moving someone to assisted living or a nursing home. It can seem selfish and expensive, and can look as though you’re giving up. However, I’m going to say something that may be hard to take in: as a caregiver, you have a life and you are entitled to it. Caregiving—even when the patient is in a setting other than home—is no picnic, so take the guilt that will attach itself to you and remind yourself that as a caregiver, your job is not done even if the patient is no longer at home.

While some may try to tell you that you’re doing a terrible thing by moving someone into a facility, my advice is to just ignore them. A situation where there is a nurse available— someone who is trained to look after the patient’s dietary needs and can handle complex health problems—may be better for the patient in the long run.

What Are Your Options for Long-Term Care?

As a family caregiver, you have a lot to be concerned about when making choices. Just getting information can seem overwhelming. Then the information you do receive can be overwhelming. What does the patient really need? What is manageable? What is affordable? Those decisions may change over time as the patient declines. Talk to your loved one’s doctor to see what they would recommend. Sometimes with doctors, however, you need to be specific. Also keep in mind that the initial decision may change over time.

How do you make decisions about what is an appropriate setting, usually in the midst of a crisis?

Independent Living

Independent living is not part of long-term care. Independent living is the prelude to other steps. In a CCRC, or Life Plan Community, being able to move into independent living is part of the planning process for the person’s decline, and is factored into the financial structure by which a person goes into such an arrangement. Independent living is very similar to living at home, except in terms of amenities that may be part of the package—or not.

Assisted Living

The National Center for Assisted Living (NCAL) defines assisted living as

part of a continuum of long-term care services that provides a combination of housing, personal care services and health care designed to respond to individuals who need assistance with normal daily activities in a way that promotes maximum independence.

Assisted living communities are designed to be operated, staffed, and maintained in a manner appropriate to the needs and desires of the residents served. Caring for residents with Alzheimer’s or other dementias and disabilities requires a community design and philosophy that ensure resident safety and autonomy.

Accommodations and options may vary greatly from one assisted living community to the next (private rooms, private baths, kitchenettes, etc.). Personal needs and preferences are important criteria for selecting a community and the amenities it offers.

Nursing Home

A nursing home, also called a skilled nursing facility (SNF), provides round-the-clock, expert nursing care and daily assistance to seniors who need more than assisted living. This assistance ranges from simple daily activities, like getting dressed in the morning, to more advanced medical services, like severe wound care. Therapy services, like physical therapy and occupational therapy, are available if ordered by a physician.

Continuing Care Retirement Community

At a CCRC (also known as a Life Plan Community), as the patient declines, all care settings (short of a hospital) are available. From independent living, a resident could go to assisted living, and from there to skilled nursing (and rehab if needed in order to return to independent living or assisted living).

CCRCs usually require an entrance fee and then a monthly fee that covers expenses, including food. Many include cable, Wi-Fi, and utilities. For most, the concept is that the monthly fee does not change as you decline (except for inflation) and move from independent living into more care-intensive settings.

There often are waiting lists to get into a CCRC. Choosing a CCRC can be a complicated financial decision.