Recently, a friend of mine, who works in this field, asked, “how do I advise friends and clients who are in the uncomfortable position of having to choose a new home for mom or dad?”
First of all, I want to point out that there are several other choices besides Assisted Living Facilities (“ALF”) and Nursing Facilities (“NF”). I encourage EVERYONE to look at those options before setting their sights on an ALF or NF. See also, my earlier post, here.
This blog post will not discuss Independent Living, Continuing Care Retirement Communities, Home Care or any other alternatives. I will not spend much time talking about Nursing Facilities either but, I think it’s really important to distinguish between ALFs and NFs. Here’s the important differences:
- ALFs are NOT medical facilities. They are NOT required to have a medical director (doctor), or even nursing staff on duty. It is possible that a resident’s attending physician will make a “house call” to the ALF. But, there is no requirement for medical staffing – not even for a nurse, RN or LPN. Many ALFs do have a Licensed Practical Nurse (LPN) on duty, particularly during the day. But they are not required to do so. The majority of the staff are administrative, Certified Nursing Assistants (CNA), housekeeping and dietary workers, and Medication Technicians. There is NO requirement for a doctor to be present or see a residents at any time. If a medical situation arises, typically there is no qualified medical staff there who can assess the situation and call a doctor for direction. The result is that your family member will be sent out to their physician, or more likely, 911 will be called and residents may be transported by ambulance to the nearest hospital.
- NF’s ARE medical facilities. They MUST have a Medical Director (an M.D.) and there are requirements for Registered Nurses (RN or NPs) They also staff with many Licensed Practical Nurses (LPN). They employ many CNAs and MedTechs. They will likely have an RN on duty who can at least assess and report to an M.D. who can make a determination of the urgency of care or issue medical orders and prescriptions by phone or fax. They can decide whether it can be addressed by the attending physician (often the Medical Director) if a trip to the hospital is necessary.
- Because of the above distinction, the two types of facilities are regulated differently. ALFs are licensed and inspected by Social Services. NF are licensed and regulated by several other agencies including the State Office of Licensure and Certification as well as Department of Medical Assistance (DMAS) and Federally, they are regulated by CMS (Center for Medicare and Medicaid Services) under the Department of Health & Human Services.
- This difference used to mean that these facilities used to be priced differently. This is less and less often the case. The difference in cost is negligible if the level of assistance is about the same.
- One is initially placed in NF or ALF not because of what we “choose” – whether one goes to an ALF or NF will largely depend upon their level of care required. More on this below.
Since rarely does one have too much choice about NFs (it typically being a function of dollars & cents and available beds), the remainder of this discussion will center on ALFs.
Before I continue, I encourage readers, if considering an ALF, to first take the time to watch the outstanding production, Life & Death in Assisted Living, which aired on PBS “Frontline” in July of 2013. Please watch it. Note that it primarily addresses, “for profit” ALFs.
To be clear, a “non-profit” is not an institution that doesn’t make money. Non-profits differ from for-profit corporations only by how they distribute the money they make. For-profits have shareholders; profits are typically paid out in the form of “dividends” to the shareholders. For-profit corporations also have a Board of Directors, and officers (President, Secretary and Treasurer) as well as “operating officers” or executives – CEO, CFO etc. Often, these people command very high salaries at the corporate level. Non-profits, generally speaking, do not have shareholders. The money they earn is plowed back into the business in the form of capital improvements (buildings, equipment), more staff, higher salaries, better programs and training and the like. But they too have Boards of Directors, CEO’s CFOS and other “corporate” employees who command high salaries and money earned by the facility can, and often is, distributed at the end of the year to these folks in the form of salaries, bonuses and other forms of compensation or benefits. It can also be “poured” into a Trust for later use or distribution.
One should also distinguish between Charitable Non-profits. Some, but not all, Non-Profits are “Charitable” organizations. Just because a “Non-profit” is affiliated with a faith community (e.g. the Catholic Diocese, Mennonites, Jewish affiliated, Disciples of Christ, Presbyterian Church) does NOT mean it is a “charitable non-profit organization.” A religious non-profit designation typically has to do with their tax status and means they are likely exempt from taxes. A Charitable Non-profit MAY be tax exempt, but that is not necessarily so.
None of this “corporate, legal, mumbo jumbo” should really be a concern in choosing a home for mom or dad except that on the whole, “non-profits” seem to manage their human and capital, resources better, and, as a result, provide better care. Faith-affiliated communities (no matter which faith) seem to have a better structure in place for using their much larger, more dedicated, pool of volunteers to good purpose. In our area, we have many faith affiliated facilities including Catholics, Mennonites, Mormons and Presbyterians to name a few. That does not mean you must BE Catholic, Mennonite, Mormon or Presbyterian to live there. It means it is run by or affiliated with, those communities.
Whew! I digress.
Getting to the meat of the subject, most people end up in an ALFs because they need “memory care” or because one cannot otherwise be cared for home, even though they are not physically debilitated enough to justify NF care.
I have been in many ALFs (and NF) both here in Virginia, and in North Carolina where we looked at various facilities for my mother. One thing I find they all tend to have in common is a good marketing director.
The marketing director is talented at showing you around, by appointment. Marketing Director will point out the lovely “restaurant style” dining room, the linen tablecloths and china, the “chef prepared” meals; the nicely appointed “common room” with big screen TV(s), fireplace, game area etc. You might also be shown a charming garden area that is “secure” where “memory care” residents are free to wander in and out. You may be agog at the lovely furniture, wallpaper, thick, plush carpet and beautiful tile or polished wooden flooring and vaulted cathedral ceilings. You will also be shown a selected “suite” or “apartment” which might even belong to an agreeable resident. You will probably be shown several “floor plans.”
At the end of your tour, you will probably be given a sheet that shows the cost for private and semi-private accommodations called “suites” or “apartments.” Indeed, many ALFs no longer even use the “F” word: “Facility”.
Usually these “suites” are rooms; single (“private”) or shared (“semi-private”). They may have a kitchenette area with sink and microwave, and a tiny area with counter space and storage cabinets. Typically rooms have one on-suite bathroom which has a pull cord for emergencies.
Their information sheet may, or may not, disclose some additional charges for instance:
- Increased levels of care (“level II, level III etc.)
- Upcharges for “continence” care
- Upcharges for “memory care”
- Upcharges for “medication management” (in addition to “pharmacy charges”)
- Ancillary charges for all sorts of products: a box of Kleenex that is $1.49 at Walmart, will cost $5 at an ALF, the same for shampoos, soaps, hand lotion; often there are no controls on what the resident asks for no matter how demented they may be;
- Pharmacy charges.
- Charges for laundry and housekeeping service
- Internet, cable TV and telephone charges
- Charges for additional “private duty” nursing (!!)
- Cost of meals not on “meal plan”
- Charges for barber, beauty parlor, mani- or pedi- cure services
- Charges for transportation or activities fees
How do these things add up? Well, let’s look at the pharmacy example. Naturally, you expect your loved one to have medications administered through the facility’s pharmacy. But your Mom also takes aspirin as a blood thinner. Or Ducolax (a very common stool softener). In the past, you probably purchased Aspirin from a retail pharmacy like Walgreens in 300 count bottle for less than $5. Ducolax (especially if its a store brand) is similarly priced. Now these items can only be provided through the ALF pharmacy because it must be “bubble packed” for administration by a med tech. Now you will pay $1.39 for EACH aspirin through the ALF pharmacy; instead of $5 for nearly a year’s supply. A year’s supply will now cost you $507 for the year. Ten times what it used to cost you! (these are examples taken from actual ALF prices, the prices paid at a particular ALF may be different)
The biggest “add-on” is going to be additional “care levels.” Let’s say the “base rate” is $3,000 a month for your semi-private “suite”. It is not at all unusual – after one is admitted – for the staff to do an “assessment” or “care plan.” After that assessment is done, the care planners will decide that a resident requires more care than originally planned for, for example, they may now need “medication management” or “continence care” or simply, more CNA hours than anticipated so they become a “Level II” care resident. Suddenly your bill went from $3000 each month to $4000 a month. Or even $5000 a month.
The savings one thought they were going to get by doing away with the expense of staying at home with home health, going to a nursing home and other seemingly more expensive alternatives has simply evaporated into thin air. To make matters worse, once mom or dad’s money runs out (as it will, pretty quickly at this rate!) Medicaid is not going to be available to pay for care in an ALF (except in very rare instances). Remember, it is not a “medical” facility so Medicaid won’t pay for it.
So now, all of Mom or Dad’s money has been spent at the ALF; where do Mom or Dad go? To the very nursing home you were trying to avoid all along. But, since you can’t afford to pay privately anymore, you’re at the end of a very long list of people waiting for a Medicaid bed to become available.
So that’s the money issue.
There is a far more substantial consideration than cost: The quality of care. And by that, I mean, the people who provide the care.
First of all, how many are there? Are there enough people on duty so that they don’t seem pulled in 15 directions at once? It’s useful to visit in the morning – unannounced – when Aides are typically busy getting residents up, bathed, dressed, fed and medicated. Are there enough workers to do this without leaving tasks undone or to keep some residents waiting for unreasonably long times for assistance? See if you can position yourself near the spot where the call-bell alarms light up. How many go on, and stay on, for more than a few minutes?
Do the aides seem to know what they’re doing? I’ve seen CNA’s try to get people into wheelchairs who didn’t know how to transfer the resident or position them in a wheelchair or position the chair’s appliances, pads and support pieces to keep them safe, stable and comfortable. I’ve seen them try to do this with the brakes off, such that the wheelchair keeps shifting (dangerously!) for everyone. Are they gentle and reassuring? Or do they shout maybe shove people along, oblivious to the pain or discomfort they may cause? In the case of bathing, toileting or dressing, do they take the time to shut the door or pull the curtain to protect and be cognizant of the resident’s dignity?
Where are the staff? Are they on the floors and in the rooms with residents? Or do they clustered at a “care center” (a.k.a. a nurses’ station) talking to eachother or on the phone? If you can, go visit a resident in their room. While there, ring their call bell. How long does it take until someone responds? And not just putting their head in the door, turning off the bell and saying, “I’ll be right back!” How long does it take to actually respond to resident’s need?
How do staff interact with residents? Do they talk “at them” and walk past like they are pieces of furniture? Do they address them respectfully and by name? Do they squat down so they can look them right in the eye if they are bed- or wheelchair bound? Or do they stand over them or behind them such that they are hard to see or hear which may frighten or startle? (Alzheimers and dementia patients almost always have a severely restricted field of vision. Most other frail and elderly people have deficits in sight and hearing too). Are they overly patronizing or do they speak to them as if they were small children or in “baby-talk”? Or do they gently touch a resident’s hand or knee to let them know they are there and care? Do they know and address visiting family members by name?
I recommend finding a “high traffic” spot in the facility – near a central work station, the activity room, the dining room – where you can simply sit and observe things for at least an hour. Take your time, get an accurate picture. You might even do this at different times of day if you can.
Have a meal in the dining room with the residents. Don’t call ahead, just show up unannounced. They can easily set an extra place. If they can’t accommodate that request, well, ask yourself why? You might have to pay a couple of bucks. But you will get a much more accurate picture of the quality of the food than the one you will get if the Marketing Director arranges for you to dine with them. Assisted Livings are a community where people live. You don’t have to make an appointment with the Marketing Director to visit.
Above all, use the smell test. If the place smells of urine, turn around and walk out. There is NO excuse for a facility to smell of urine. Urine is mostly odorless when it leaves the body because it (under normal circumstances) is sterile at that point. If you smell urine it is because it has been exposed to air and bacteria for at least four hours. If it smells, that means someone(s) has been sitting in urine soaked diaper, bedding or it’s in the carpet for at least four hours. Aside from being embarrassing and uncomfortable for the resident, it can have very serious health consequences, not least of which is skin breakdown leading to “pressure ulcers” (bed sores). Feces is another matter. While I hope that’s not an odor you run into, it does smell strongly and immediately. As a result, it is usually addressed more quickly. But not always. Lingering fecal odors is of course unacceptable.
Lingering food odors – aside from not being very pleasant – can indicate that kitchen or dining room is not cleaned adequately or that air circulation is poor. If there’s a strong odor of Lysol or air freshener you can bet they are covering up other less pleasant smells.
Bottom line: ignore the “bricks & mortar” – it doesn’t matter how lovely the wallpaper, how smooth and classy the upholstery, how eye-catching paintings, how bright the linen tablecloths, nor how fancy the cherry furniture and granite countertops or any other décor; so long as it is clean, well furnished, and in good repair you’re probably going to be ok. Good lighting & fresh air are far more important than expensive trappings (who do you think will pay for that?). Study the prices with a cynical eye and ask many questions about “extras.”
Your “gut” will most likely be fooled by the very nice Marketing Director and the pretty building. Don’t listen to that. Your gut is looking at a Potempkin Village.
The single most important inquiry is “where is it?” followed by “where are you?” If you are not close enough to visit regularly, Mom or Dad is not going to get the care they need. The proverbial “squeaky wheel gets the grease” goes double in Assisted Living. You – as caregiver or adult child of a resident in an ALF – must be prepared to visit regularly, as often as possible. You may not be daily caregiver anymore. But you do have a responsibility to make sure care is provided. You won’t do it if you have to drive any significant distance to visit. You don’t have to spend hours and hours. Just a few minutes puts staff on notice that you are keeping an eye on things. Be observant and ask questions rather than make demands. Are mom’s clothes coming back from the laundry? Can you see her Medication List? What is each medication for? Are her teeth been brushed? Is her hair done? Do her clothes match? Has she been to activities, did she eat all her meals (best to eat one with her!)
VERY IMPORTANT: be sure to thank staff for their hard work taking care of your family member. Theirs is not a pleasant job. They work long hours, weekends, nights, holidays; through snowstorms, hurricanes and all the resultant emergencies like power outages. Their feet and backs hurt. Your mother or father may cuss at them, throws food (or worse) at them, call them names, bite them, kick them, refuse medication; they make many unreasonable demands upon them. ALF staff do all this for somewhere around $8 – $10 an hour; many are part-time employees lacking any benefits. Some have been doing this work for 20, 30 and even 35+ years. Yes, they could pick another low paying job: they could pump gas, be a cashier, could cut lawns. But they choose to do this job. For most, it’s a labor of love. Thank them. Not just the nurses or CNA’s. The dietary and kitchen staff; the housekeeping people, the laundry personnel, the volunteers, the activities people, the social workers, the administrative staff, even the facilities guy (fixes everything! Including mom’s tv). And ok, the Marketing Director. They ALL come into contact with your family member daily and make the place a home for them. Please thank them even when they are not perfect.
Are Assisted Living Facilities my preferred solution? They absolutely are not. But I recognize that it may be the only feasible solution for your particular situation – especially in some of the more difficult dementia diagnoses. If the facility you are considering claims to have “memory care” or a “dementia unit” – then they better have properly trained and qualified people to care for those residents. Ensure that they do: ask to see the certifications and credentials of the people they claim to have on working on the “Memory Care Unit”. Ask about specialized activities or other factors that make it a “memory care” unit. Simply locking a unit up such that wandering dementia patients can’t freely go in and out is not “care.” It’s a prison. Likewise, drugging a resident with “behaviors” due to Alzheimer’s or other dementia is actually the use of chemical restraints. The use of chemical restraints is dangerous and illegal.
If after all your exhaustive research, you find your loved one in a facility that does NOT meet the standards you expected or their care is just not up to par, call me. There are many ways to address it. I have likely been there before and will have some ideas how to go about fixing it. Often measures far short of have to move mom or dad again, or suing the facility – neither one an outcome I want to see happen.
Good luck on your journey. This is a difficult path you’ve been thrust upon as you become parent to your parent or other aging loved one. You are not alone, many of us are traveling it with you.