The shocking way that kind words hurt old people
These numbers make my joints hurt.
Warning: this might not be a very amusing article. This week, my 80+ uncle (who has no kids and no spouse and no living siblings and has always been joyfully independent of other people: living alone, playing piano whenever he wishes, and occasionally accompanying auditions, operas, or playing onstage in ensembles) had a medical mishap that landed him in a hospital needing special care. My brothers and I took up the responsibility to help him make some huge life decisions, and I can’t tell you what a crazy ride it has been.
Do not worry, this isn’t about his ills. I’m going to define all the crazy new euphemistic terms that medical insurance uses for the various in-patient facilities that took my family completely by surprise me as we looked into my uncle’s next stage of healing.
Normally, people discover these words are not interchangeable approximately as soon as someone has a medical emergency. So think of this as preventative care.
So, first off, the price tag.
Normal families hear “find him a home with skilled nursing care” and they think “Oh. A retirement home.” Then they Google it.
A swanky retirement home (like you see in the movies with the daily yoga and casino night and nice meals and a reasonably big room of your own (~900 sf) decorated so it looks like an apartment that other silver-haired foxy-people and very young relatives might like to visit) costs $7,500 per month, all inclusive, for food, activities, housekeeping, utilities, and rent. Per month.
They do not offer medical care. Got that? That price tag is WITHOUT medical care.
Remember that most times when you’re taken by financial surprise, it is because of a medical incident. In these swanky places, all visits from doctors are extra: if you need 3x day visit from a nurse, your monthly bill is now around $12,000. Monthly.
Also? It’s probably not covered by your insurance. It’s just a safe place to live.
Old vs. New Vocabulary:
Next up, the completely baffling and unintuitive language that is standard to everyone in the profession of caring for the elderly….and no one else.
First: Medicare vs. Medicaid. If you don’t know they are completely different things click here for a chart.
This upscale retirement home is now called, drumroll please: “Assisted Living” — this phrase has a real meaning, it isn’t just a marketing term. It signifies is an endless summer camp for the elderly, a village full of potential friends who also have no uneven floors in their single-level apartments with sleek golden hold-bars in their spotless bathrooms, a resort lifestyle for the golden years…until your medical needs exceed the capabilities of the onsite health center. The high monthly fee is ONLY for the luxury housing, daily upkeep, maid service and meals. Not nurses. Not doctors. They won’t let you in if your medical needs exceed their medical staff. Literally a resort: offering rooms or apartments, menus or chef-inspired creations & activities that run the gamut from pool yoga to celebrity concerts. They have a better first aid room than your local cruise line, and their activities are geared to an older age group’s ability set and interests, but otherwise? It’s pretty much a resort.
“Assisted Living” is never covered by Medicaid and rarely by any insurance, because the home is generally run by a big company that is for-profit. Not Carnival Cruise Lines, but the land-lubbing equivalent, for social blue-hairs who are still super active and have the means to ensure that they get to keep being social and super active if they feel like it. These places don’t have rooms, they have apartments.
If you happen not to have $150K per year zipped into in your mattress, and need to use Medicaid or Veterans’ Benefits to pay for your upkeep, there is a slightly less chandelier-driven housing option called “Supportive Living” — this looks more like what we used to call a “retirement home” but instead of casino night it’s Bingo night, instead of a pool there’s a simple gym or a Tai Chi class on the lawn. Same thing though: the person has to be fairly healthy to qualify to live in the supportive living apartments. Like the super fancy places, these places also “give you access” to highly trained medical staff… in other words, doctors are like the minibar at a hotel: available, but the cost of those things are up to the individual. In Supportive Living the medical can be a little easier to afford. Supportive Living facilities are sometimes quaint, caring places run by individuals, sometimes quaint, caring places run by companies, and more and more frequently, are gigantic conglomerates of smaller, caring places run by large corporations that have acquired multiple small facilities and franchised and branded their quaintness.
Social workers are quick to point out that there are extremely satisfied and comfortable clients in both sorts of retirement homes and that there are ALSO dissatisfied, miserable clients in both kinds as well — as well as real horror stories, but let’s steer clear of those, shall we? (please!!)
Even if you happen to know there are now two levels of retirement village, it is super-hard to find Supportive Living when you first look for a new home (for whoever) because all the fancy for-profit places have very nice stuff and eye-catching internet ads and lots of ad-dollars to back those up. They buy Google Adwords so that if you type in Supportive Living you get listings that suggest Assisted Living and stun you with the glamorous, resort amenities. Hope you’ve been saving.
In addition, the buying and selling, merging and corporatizing of the smaller and less flashy Supportive Living facilities is such a common occurrence right now that it is hard for social workers to be able to recommend them, since their names change so frequently! (Not to mention the fact that States usually make it illegal for social workers to recommend anything — at best they can offer you a selection and you have to make your own choices. I also found out that case workers are usually too busy dealing with incoming patients to even be able to take the time to tour the close-by Supportive Living places to even know what they are like!)
But in any event, both Assisted and Supportive facilities are for healthy older adults — the ones that are looking for community and activities among other older healthy adults.
What if you’re not that lucky? What if it is a medical incident that makes you suddenly unable to be in your home without nursing care?
Now the vocabulary changes get really tricky. We used to have long-term care facilities called “nursing homes” — it meant you were there for a long time and whenever you needed a nurse, they were pretty much right there. Now it is a far more complex situation and this is because nursing homes now make their money from REHAB, not from staying there. So “nursing homes” are now places with lots of doctors and nurses on staff, where you go for a short stay and are expected to get better. People in the business now call this a “SNIF” (Skilled Nursing Inpatient Facility) and if are told the patient (or you) requires skilled nursing, that’s not just a sweet way to tell you to see someone clever with needles, it’s a phrase you should Google.
Despite being called a nursing home, a SNIF is kind of a longer-term rehab hospital (and like a hospital, most rooms are doubles with a curtain between the roommates). They rehab until the patient plateaus. Then it’s time to go. Average stay at a SNIF is 28 days; Medicare can sometimes pay for up to 100 days but at the end of this time, you have to leave.
(Note that even the SNIF has an alternative: the “Acute Inpatient Rehab Hospital.” Here is a side-by-side comparison chart of what you get at each. Note that this is chart is from a website that is using this comparison to make their own place sound like the obvious place to go. It is a marketing tool and therefore NOT neutral. That said, my uncle was at one of these and it was amazing the care they took of him.)
Okay, so let’s say we have used up our allotted time at a SNIF. At this point, you are going to one of three places. Either you’ve gotten mentally worse and have to go to a memory center— the new-and-improved “Memory Centers” are a newish concept and have trained help specifically geared to aid people who no longer have their faculties for one reason or another …
…Or you are physically worse for some reason and have to cycle back to an actual hospital… OR you did your PT and managed to improve, and you’re relatively heathy again and NOW you get to go to that retirement home— assisted or supportive living — with your new bionic parts and/or your fabulous biotech devices. AND if you can’t afford a resort or you can’t get your head around moving from your house into a single permanent room with a roommate, after 100 days of rehab you’re sent home with some recommended/required level of visiting in-home nursing care (who, by the way, are now called CNA’s and the code phrase for needing a nurse is “skilled level of care”) — point is, though the vocabulary is the same, the new purpose of a nursing home is to send you home after nursing you, whether or not your home is safe for you anymore.
One thing that I thought was positively crazy about all this (besides the fact that no one knows any of this language, it changes all the time, and it is beyond common to miscommunicate and waste a ton of everyone’s time by not knowing it) was that insurance makes NO allowance for people who have reasonably healed but are unable to go home because, for example, their home is a 3rd floor walk-up and they can not do that many stairs at once anymore. No allowance at all. Not money to stay longer in rehab, not housing help. Nada.
Frequently the stress of decisions/options/nightmares as regards cost and value, on top of the baffling vocabulary, the confusing options, the insurance legalese, and the sales teams waving ever-more-expensive options end up resulting in escalations in everyone’s medical needs — in other words, intense stress can and frequently does lead to less sleep, weird eating habits, depression and anxiety, which can and often does result in: paranoia, falls at home, nutrition problems, etc…all of which can then turn into strokes and heart failure. Meaning that a relatively healthy person of significant age who might have just needed daily in-home visits from a nurse, in stressing over next-steps might sleep poorly, fall and now has a bad concussion and can no longer make decisions or be trusted on their own judgement— landing them in the final kind of retirement housing: “Memory Care,” the newest addition to the plethora of choices, reserved for those who have dementia or Alzheimer’s.
Memory Care Unit is a different “home” than any of these other places, though SOME of the above places also have memory care units/specialists. (They’ll cost extra.) Confusing? Yep.
Picture it this way: a SNIF might have three wings with a central atrium where everyone can mingle. Two wings are full of shared hospital rooms for their short term rehab patients (up to 100 days and/or whenever you plateau). One wing is long-term care (Medicaid Patients who for some reason are not able to return to their homes and can’t afford to be transferred out to other living situations) and memory care (dementia-sufferers). Then, near this building, there is a little colony of cottages where people-of-a-certain-age live independently and hope never to need the SNIF.
But if you don’t know this, your acute rehab center might be telling you to find skilled nursing care and you’re thinking “nursing home” never knowing this SNIF level exists. Every decision is partly based on your medical needs but after that is entirely based on how much money you have vs. what your insurance will cover. And while we are talking about impossible-to-navigate things that could be fixed by the availability of universal health care, did you know that many of these retirement communities do not provide Hospice, at all? Hospice is end of life services using counseling, music or religion if you want it, mood-altering meds, and other therapies to try to help you be okay and at peace with leaving this whole clambake behind. How can any place that caters to the elderly not offer that? I mean…???
Well, that has probably been the least diverting and most depressing article you have read all week. Sorry! But I hope that you learned something of use, even if it just helps you to be more compassionate to the next adult who complains that is is hard to help their loved one find a retirement home.
What is it about humanity? The things that make us mentally squirm the most are the very things that every single one of us experiences.