When facing a choice of living situations in old age, the number of options may appear confusing. Over the next three posts, we’ll review each option available to you or your loved one in the marketplace and summarize the options Cedar Sinai Park offers as part of our developing continuum of care. The review is excerpted from our Guide to Care for an Aging Parent.
People choose retirement living initially for comfort, convenience, and companionship rather than for the actual assistance provided. Such facilities range from high-rises with housecleaning, linens, and meals served in a communal setting to huge colonies of homes restricted to persons over 55 and featuring golf, tennis, and country-club amenities. Facilities limited to retirement options do not offer the continuum of care that can allow an older person to “age in place” and have services added as needed.
Assisted living provides a true continuum of care and specializes in meeting individual needs. Most assisted living facilities have residents who can move in with no needs other than those provided by retirement facilities. As they become frail and need more care, services are added to their plan up until care is required in a nursing facility. The limits of care available differ by facility with states overseeing facilities according to their respective regulations.
Residential care may simply be another name for assisted living. However, in some states, there are different regulations and licensing requirements for each. A residential care setting may have fewer lower levels of assistance than assisted living. More care options may be available and a resident may be admitted at a higher care level than is permitted in assisted living.
This option usually follows a hospital stay and is ordered by the physician as part of the discharge plan. Terminology has changed over the years but this is the setting formerly known as nursing home, convalescent home, rest home, or home for the aged. Current terms also include rehabilitation center or facility. Throughout the nation, such facilities are licensed by the state and regulated by state and federal policies. Most provide both skilled and intermediate care.
Skilled care is limited to that requiring the daily implementation, provision, management, observation, and evaluation of care by licensed professional staff, such as registered nurses and physical therapists. All other care is intermediate or custodial, such as assisting residents with getting in and out of bed, using the toilet, dressing, and eating. The line between skilled and intermediate care is rarely clear to the consumer and is even at times a matter of disagreement among insurance providers, physicians, and nursing facility staff (demarcation is so important because Medicare and other health insurance schemes pay for most skilled care and not for most custodial care). Some facilities provide only intermediate care and some hospitals have skilled-care facilities on their campus. However, if a patient converts to intermediate care and wishes to remain in the facility with appropriate payment, the facility must oblige.
As we shared last week, in a recent NPR interview Jane Gross, author of “A Bittersweet Season: Caring for Our Aging Parents and Ourselves” talked about her experience with caring for her aging mother. Today we bring you highlights from the rest of the interview, where Gross shares details about her journey as a daughter of an aging parent.*
The hardest thing was feeling so stupid about really basic things, like what Medicare is, what our residential choices were, and how stupefyingly expensive everything was.
Even if you know all the basics, there’s a whole category of things that are going to depend completely on the trajectory of the aging. You can’t know in advance how long it’s going to last. You can’t know in advance how much it’s going to cost.
Statistically, if you ask people, old people, where they want to end their lives, the answer is home. Not all of us are able to do that. My mother spent the last two years of her life in a fabulous nursing home where she got remarkable, wonderful care. But I had spent the two years leading up to that doing everything I could possibly do not to “put my mother away.” The guilt of that is excruciating. The number of situations that I sort of jerry-rigged in order to avoid that made it much harder for me and much harder for my mother.
I wish I had known that Medicare, which most of us believe is universal health care for old people, covers procedures and drugs and operations and doctors, but it not custodial care. So if your mom is home and you need a home health aide or you need somebody to drive her around or you need somebody to help her unpack the groceries, Medicare covers none of that. It’s hugely expensive and you pay for it out of pocket until you’re impoverished. And then Medicaid, as a poverty program, picks it up. I wish I’d known that.
Medicare was designed in 1965, and it was a perfectly wonderful health insurance system for old people in 1965, when they didn’t live these astounding ages. If you were going to design Medicare knowing what we know now, I don’t think we would design it in that way that bifurcates acute and chronic because very old people as a rule don’t need heart transplants, they need health aides. That would be number one on my wish list. I don’t see it happening.
Number two on my wish list would be a central repository of information. All of the different elements of what you as the adult child have to understand—the entitlements piece, the medical piece, the residential piece, the legal piece, the financial piece—all kind of exist in their own separate silos. You have to untangle each one of these and crawl inside each one of them separately to see how they work.
* We slightly edited the transcript for length and clarity. The remainder of the interview is at NPR.org.
In a recent NPR interview, Jane Gross, author of “A Bittersweet Season: Caring for Our Aging Parents and Ourselves” shared her experience with caring for her aging mother. The part she highlighted that gets relatively less attention in writing about long-term care is self-care. With so much attention and assistance that caregivers provide to their loved one or loved ones, caring for themselves may not be on top of their to-do list and may even escape their attention altogether.
I think [caring for yourself is] something that almost nobody succeeds at. I didn’t, frankly, do a very good job of it. It never would have crossed my mind to go on a four-day week had my mother’s physical therapist not suggested it. It was then my mother’s nurse, who said, don’t tell your mother because she will feel so guilty that this is so hard for you and that it’s going to cost you money, pension, benefits, all of that stuff. [P]rotect her from feeling guilty. In retrospect I think [that’s more important] than the managing your time or making sure you’re exercising or eating or going to a yoga class or getting your nails done or whatever it is that relaxes you.
[I]t’s very hard to give yourself permission to do it. I actually think—and again, these generalizations are onerous—but I think men are better at compartmentalizing. My brother was really great at doing what needed to be done and also really great at not worrying and obsessing in the in-between time. He sort of shut that part of his brain on and off and was just as effective as I was at the doing and much more effective than I was at taking care of himself.
We’ll share more of the interview in future blog posts. You can listen to the interview or read the transcript at NPR.org.
It should not be necessary to wait to be incapacitated. We can look for beauty and embrace our ultimate fragility any time we choose. Doing so would tell us what kind of life to lead. Once we begin living in terms of the questions, Who would take care of me if I got sick?, the whole life transforms. The question mandates a shift in the order of things, making a life rich with generosity and kindness more desirable than any other kind of fortune.
In her article “Thoughts on the Meaning of Frailty” [pdf] Wendy Lustbader makes a powerful case for transforming the lives of vulnerable people, such as elders, and finding meaning in frailty.
We hope you enjoy the piece as this week’s entry in the Elder’s Family Learning Initiative series.
In our work at the Robison Jewish Health Center nursing home, we have found that most residents and their family members are ill-prepared for the cost of living in long-term care. Yet being financially prepared can alleviate the pressure that comes with entering and navigating the long-term care system.
There are several reasons for insufficient financial preparedness. The first is the sheer cost of care. Depending on the facility, level of needed care, location, and room setup (private vs. shared), a stay at a nursing home can cost anywhere between $7,000 and $10,000 per month. This is difficult for many people to think about when faced with a loved one who’s aging and beginning to need more and more care.
Thanks to evolution in life-styles and medicine, people live longer today. Life expectancy in the U.S. has been steadily increasing: it went from 69.77 in 1960 to 78.09 in 2009. More and more people outlive their savings as they age, and often run out while already in elder-care.
Another reason may be the lack of knowledge and understanding of options to finance long-term care. All too frequent is the false perception that Medicare pays for long-term nursing-home care. However, Medicare covers only skilled care, which is by definition short-term, and even then only for a portion of it. It is Medicaid that can help people who have no resources for long-term care, and it, too, is only partial. That the available public assistance programs and other, private options appear daunting to navigate creates another barrier to financial preparedness.
For example, the process of applying for Medicaid isn’t complicated but it can be scary for anyone who has never gone through it. To learn more about Medicaid, call the Multnomah County Medicaid office at 503.988.5460; if you live outside Multnomah County, the office will direct you to the appropriate service location. The official website for Medicaid is Medicaid.gov.
An increasing number of people are exploring long-term care insurance, which covers portions of care not covered by health insurance, Medicare, or Medicaid. The key with long-term care insurance is to look into it early enough to make premiums affordable and coverage extensive.
A final factor we’d like to mention is very personal for people. It can be humbling to run out of money and having to seek outside support. If you’ve never had to ask for help and now face having to seek government assistance, it may affect your pride and be difficult to reconcile with your experience and value system.
With the looming influx of our aging population about to enter the long-term care system, it’s important to understand the financial responsibilities associated with long-term care and options that are available for financing long-term care.
Assisted living and nursing home facilities must follow a number of state regulations related to safety. For instance, residents must have food, shelter, clothing, activity choices, access to medical care and community. Residents need to enjoy a physically and emotionally safe environment.
The new generation of retirees and residents are from the Baby Boomer generation, which is different from the generations we’ve been caring for over the past few years. The Baby Boomers’ ideas, values, and beliefs stem from their experiences: they’re more independent as a cohort; they come from double-income households; they have enjoyed the science and practices of keeping themselves younger and healthier longer.
The Baby Boomers’ outlook and expectations raises a plethora of questions as they enter long-term care. Ingrained in the elder-care field is the notion that safety always comes first. In fact, service providers, elders, and family members all have their rules, values, and ideas about safety. More than ever, we now have to ask potential and current residents about their choices and preferences, and discuss honoring those choices even if this sometimes overrides other safety concerns.
For example, imagine a resident of an assisted living facility or nursing home who has diabetes. The resident’s physician, family, and care staff all recommend no sugar in her diet. But the resident wants to have a slice of chocolate cake.
In this situation, we need to ask ourselves: what is our role as caregivers? Is it doing what we think is right for the resident? Can we keep the resident safe and honor her choices? How do we creatively achieve this? Should we honor the resident’s choice even if we disagree with it or know it may lead to a negative outcome? Do we have the right to make choices for residents who are capable of making their own?
Now imagine the elder with diabetes is living at home. If she wants chocolate cake, she’ll probably find a way to obtain it. If she wants to eat it every day, she most likely will.
As health care providers, we may want to think about educating the resident who has diabetes and the resident’s loved ones about the risks of eating chocolate cake in this situation. If the resident still wants a slice, should we provide it?
This may seem uncomfortable to discuss, but it’s a discussion we find ourselves increasingly having. Person-centered care entails listening to and honoring people’s choices. Along the way, we will make sure those choices are informed and backed with an appropriate level of education.
You may ask, what if the resident with diabetes has dementia or is cognitively impaired in other ways? Some would say she can’t make the choice because of the impairment. But some would say the choice exists in the reality the resident is experiencing. Unless the resident’s individual rights are taken away by court order, we should discuss honoring those choices.
This topic is not an area with a definitive answer. Rather, this is an attempt to have a meaningful conversation about safety versus autonomy. We ask these questions with an open mind. We hope you will join us.